Psychosocial Health Podcasts

Research Notes: Qualitative Research: Benefits for Bereaved and Research Ethics Boards

2011-06-13T19:18:00.000-07:00

Interviewee

Dr Jennifer Buckle, Department of Psychology, Sir Wilfred Grenfell College, Memorial University of Newfoundland, Canada

Article

Buckle, J.L. , Dwyer, S.C. and Jackson, M. (2010) 'Qualitative bereavement research: incongruity between the perspectives of participants and research ethics boards', International Journal of Social Research Methodology, 13:2, 111-125

Summary

Jennifer Buckle talks about the strategies her bereavement research participants have suggested for harm minimisation in bereavement research, including the use of indirect recruitment methods, such as advertisements and letters of invitation through third parties, which allow people to decide for themselves whether or not they are ready to participate in research. She stresses that for ethical reasons, consent in research which uses open-ended or discovery interviewing techniques, should be an ongoing process of continual checking and re-evaluation, and explains how process consent should continue after interviews are over, with participants being informed that they can withdraw at any point, and can remove any data they have contributed. Dr Buckle also gives advice for researchers new to qualitative research who do not have a counselling background, recommending that they develop empathetic listening skills, including skills in reflecting, building rapport and trust, assuming a non-judgemental stance, and attentive listening, and that they hone their ability to contend with powerful emotions.

Transcript

Hamish Holewa: Hi, I’m Hamish Holewa, and this is Research Notes. Research Notes is a complementary podcast which explores the issues, practicalities and methodology of conducting psycho-social health research. For podcast one-hundred and nineteen, I spoke to Dr Jennifer Buckle regarding her article titled 'Qualitative bereavement research: incongruity between the perspectives of participants and research ethics boards'. Jennifer, your article notes that the relationship between the participant and interviewer can be close to a therapeutic counselling session. What is your advice for first time qualitative researchers or those inexperienced in qualitative methodologies to interviewing techniques?

Jennifer Buckle: Right off the top, the training and preparation of interviewers is an essential component of ethical research, in qualitative research. That's the key premise that I'm working from, is that an interviewer maybe a first time interviewer or inexperienced, but that interviewer should have a lot of skills training and education in the interview method and qualitative methodology. Although the qualitative interview is not a therapy interview, there are some similarities. I'm a clinical psychologist, so the skills and education I acquired in that domain I feel have strengthened my ability to conduct the qualitative interview. So there is a skills transfer for those with a clinical or counselling background. for those without that background, my advice is, to really develop and hone the interviewing skills: empathetic listening, reflecting, building repour and trust, assuming a non-judgmental stance, attentive listening, and honing your ability to contend with powerful emotions. Also developing your own self awareness, you know, being honest and clear and self reflective about what you as a person are bringing to the process. So documenting your own subjectivity, your own bias, you know, really owning your own perspective. This self-awareness doesn't come easily, doesn't come quickly often, and can be difficult to identify. I'm not suggesting that if you identify the presence of subjective factors, it negates them. it certainly doesn't, they're still there but at least you are aware of them now, and can be aware of their influence. it heightens personal awareness, which is an important component going into a qualitative interview. If I could summarise a categorisation of the main skills, they would come under two main categories. They would be your interview skills, and then the relationship skills. So your relationship with the participant in the interview, because it is an interpersonal interaction, and also your relationship with yourself, recognising your own subjectivity, recognising your own perspective, and your own reactions in the process, and learning how to work with those reactions in a way which doesn't impede or overly influence the interview process.

Hamish Holewa: Yes, absolutely. You also note that in qualitative research, consent should be an ongoing process of continual checking and re-evaluation. Why is that so?

Jennifer Buckle: This is addressing one of the ethical concerns with the discovery oriented interview, or the open-ended interview method. This interview method, one of the main ethical concerns is that it complicates the informed consent process. The argument is that participants cannot provide true informed consent at the beginning, because they don't know exactly how the interview will unfold. And it's true that a qualitative interviewer employing the discovery oriented or open-ended approach, can't predict with a 100% certainty, how the interview will unfold, because we're in a stance of regarding the research participant as an expert of their own experience, so the researcher is in the role of learner, and is not presuming to know, before they do the interview, what's essential to that individual's experience in terms of laying it out in a form of structured questions. The open ended approach, you don't know exactly how it will all unfold, because you're not following a list of structured questions, but you have a fairly extensive idea of how that will happen.

Hamish Holewa: Yes.

Jennifer Buckle: You know, at the beginning of the interview process, you describe in as much detail as possible, how the interview will unfold and what the participant can expect, and that would be similar to your typical one-time informed consent. But the notion of ongoing consent or process consent, stays with the whole research endeavour. So during the interview, the researcher again, is in an interpersonal interaction with the participant and is witnessing the impact of the interview process. In that interaction then, the interviewer is able to address concerns that may arise, or respond to situations that may arise, where you may want to check again to see: Do you want to continue the interview? Are you consenting to continue the interview, or would you like to stop the interview? These sorts of things. So that's the notion of process consent. Ongoing or process consent continues after the interview is over, so that the participant is informed they can withdraw at any time, just as they are informed at the beginning, and they can remove any data they've contributed. So consent doesn't end at that one time signing of a consent form. It happens at that beginning, it's also an ongoing process during, and continues until after the interview is over. The participant really shapes the focus and the rate of the interview, and at a level that they feel most comfortable to discuss it, and so therefore consent is ongoing and mutually negotiated throughout the complete process.

Hamish Holewa: On another note though, you note that some participants can actually feel a sense of betrayal and feelings of loss following the publication of the story that they told, in print, whether it be in a peer reviewed journal or some other means, Do you just want to elaborate on that as well?

Jennifer Buckle: It hasn't been a personal experience of mine, but I think as qualitative researchers we need to be aware of the possibility, when you're talking about something that's intensely personal and painful in many ways. Sometimes their story is retold by the researcher in a way that they feel a sense of loss of ownership. So, their story is frequently divided into fragments or sections or themes, and potentially interpreted by the researcher, and the participant may disagree with that dividing of the story or the interpretation. Now a lot of times in qualitative research there's a process built in for that participant’s feedback on the interpretation of the researcher, but some may disagree with how the researcher has presented the test or the themes that were identified, and that may lead to a loss of ownership. And so it's something I think you need to bear in mind when you’re setting up your research design, and when you're working with participants.

Hamish Holewa: Absolutely. You note the researchers need to be aware of concepts and issues that may have caused discomfort or harm during the enrolment, particularly of sensitive populations, such as dates or how a person is actually approached for participation. Do you just want to elaborate on those issues for our listeners?

Jennifer Buckle: This is another really good example of how we learn from our research participants in so many ways. We learn about the actual phenomenon that we're asking them about, but we also learn about the process, what works best for them, what doesn't. These sorts of things. And that's valuable knowledge to carry forward in terms of future research designs. So, bereaved participants have offered ways of minimising the potential for harm, especially in the recruitment process. There's been a lot of positive response about the interview process, and so they've offered some suggestions about the recruitment process as well. And one of their key issues is the idea of indirect recruitment, so that, if you're wanting to recruit bereaved participants, you do it through advertisements, you do it through letters of invitation that are distributed by a third party, so that it's not a direct interaction in terms of recruitment. Also a sensitivity to avoid special dates, so maybe a date of birth or a date of death, that, if that knowledge is there to avoid sending a mail out, or advertising when an individual may be seeing that around a special date. So, having a sensitivity to avoid special dates for potential bereaved participants. This sensitive indirect process, allows people to decide for themselves, if they feel ready to participate in the research. And that's what participants, bereaved participants, are really saying time and again, is that, let me decide when I want to participate, as opposed to the researcher setting an arbitrary time frame. Instead, put it to the participant in an indirect, sensitive manner, and then they can make the decision if they feel ready or not. Some people may feel ready shortly after a death, others it may be a number of years before they ever feel ready to participate, and others may never want to participate.

Hamish Holewa: Thank you for speaking with us today on Research Notes about needing an open and transparent process of qualitative research and to also be reflective and very much flexible to the needs of the participants. It's been a pleasure.

Podcast

qualitative research, bereavement

'Bearing Witness': Helping Research Ethics Boards to Understand the Value of Bereavement Research

2011-06-13T19:16:00.000-07:00

Interviewee

Dr Jennifer Buckle, Department of Psychology, Sir Wilfred Grenfell College, Memorial University of Newfoundland, Canada

Article

Summary

It is a widely held belief that people who are grieving for the loss of a loved one are vulnerable and need protection, and that asking them questions about how they are feeling risks causing them additional pain. This puts members of research ethics boards in a difficult position when deciding whether or not to approve bereavement research proposals. Many committee members also have concerns about whether people experiencing bereavement are in a psychologically competent state to give informed consent to research participation. This week, Hamish Holewa, talks with Dr Jennifer Buckle, who has found that if people experiencing bereavement are not asked about their feelings, they feel isolated and experience yet another level of loss because no one is talking to them about their loved one. She says research participants are grateful to have researchers listen to their pain, without silencing them, and they often gain insights through the process and feel an 'emotional release'. Dr Buckle says participants have suggested strategies for minimising potential harm in bereavement research, and she recommends that these be incorporated into research design. She also urges members of ethics boards to consider the full range of benefits for participants which are increasingly being documented in the literature.

Transcript

Hamish Holewa: Hi and welcome to IPP-SHR podcasts. I'm Hamish Holewa and for today's podcast, I'm talking to Dr Jennifer Buckle, in the Department of Psychology, Sir Wilfred Grenfell College, Memorial University of Newfoundland, Canada. I am speaking today with Jennifer about her article and study titled: Qualitative bereavement research: incongruity between the perspectives of participants and research ethics boards, published in the International Journal of Social Research Methodology, and co-authored with others listed on our website.

Hi Jennifer, thank you for speaking with us today.

Jennifer Buckle: Hello, thank you.

Hamish Holewa: Your article explores the differing perspectives of research ethics boards and participants in regards to bereavement research. You note that ethics boards reflect the societal norms of people going through a significant bereavement experience. Do you just want to describe these norms and how do they actually influence the decision making of ethics committees?

Jennifer Buckle: One of the key norms, is conceptualising bereaved individuals as vulnerable and in need of protection. So the core issue for R.E.B.'s becomes, you know, are the bereft in a position to give informed consent, the assumption being that the pain of grief makes them vulnerable, and this vulnerability gives them diminished competency to give consent to participate in research. And yet there are other norms in society that don't support this notion of the bereaved as having diminished competence. For example, there's an expectation that bereaved individuals return to their roles and responsibilities within days sometimes, after the death of a loved one. An example of that would be around paid bereavement leave - in many employment settings, it's two to three days of bereavement leave, regardless of the type of loss and regardless of the relationship. So that sends a clear message that after a short period of time, employers at least feel that bereaved workers are competent to resume their employment duties.

Another norm that doesn't support the notion that they have diminished competence is, bereaved individuals are presumed competent to make significant financial decisions in the form of funeral arrangements, often immediately after the death of a loved one. Also, we want to make sure to avoid assuming that bereaved individuals are homogenous. There's many different types of loss, many different reactions to loss, many different levels and depths of relationships. Another aspect around the societal norm issue is that, asking a bereaved person about their loss will cause or induce pain, and I would argue that when we ask a bereaved research participant about their experience of the death of a loved one, we're really bearing witness to pain that is already there. It's not that we are setting up an experimental situation that's going to cause or induce pain. We are asking questions and listening to the pain that already exists. So the societal norm that it is best not to ask about topics like loss that can then elicit a strong emotional response such as sadness, that norm can influence members of R.E.B.'s, and it has the impact of leaving bereaved individuals feeling isolated in their experience, and many bereaved individuals talk about this as in fact another level of loss in that no one talks about their deceased loved one anymore. No one wants to upset them, so they don't bring up the person, but this feels like another level of loss to the bereaved individual.

Hamish Holewa: And your research indicates that people involved in qualitative research within the bereavement perspective, view the process positively. Do you just want to elaborate further on that topic?

Jennifer Buckle: We've received a lot of positive feedback from our participants, and the feedback follows along from some general themes. The first is that, participants have expressed how grateful they feel to have had the opportunity to sit down and engage with an interested other listen to their story, hear about their loved one, and listen to their pain without silencing them when their tears come. And often times research participants will say, 'I'm ok, I want to keep going, I want to keep going', you know, sort of reassuring the researcher in many respects. And recognition that they are experts in their own experience, so as qualitative researchers, we are coming to learn from them. And also, bereaved participants are going into the process with their eyes open. they know that they are going to be discussing their loss but they have repeatedly told us that they're not deterred by that. So the emotional release that they feel, the telling of their story, sharing the story of their deceased love one, is really important to them, and as a side effect of sharing their story, sometimes they gain personal insights,. Not all the time, but sometimes, you know, a participant may put something together or think about something in a way they hadn't before and they feel that that was a benefit as well of being in the interview.

Hamish Holewa: Yes, absolutely. And I suppose the benefits of that come with clear expectations of the research and what the outcomes are?

Jennifer Buckle: The participants would be very clear in terms of what the purpose of the interview is, and what the purpose of the collection and the analysing of the data is.

Hamish Holewa: And your participants also noted other benefits?

Jennifer Buckle: You know there's this whole notion of the personal or individual benefits the participants talk about, but then there's this other level that they feel they're offering their story, their experience, to somebody else. And that help may come in terms of giving hope to others who are bereaved. So letting them know that, you know, things can improve, that you can survive this loss. Also, contributing to the better understanding of grief. Sometimes bereaved participants feel there's a gap between what's out there in the research literature, and what is their lived experience. And also, promoting a more open discussion about death and grief, and reducing the isolation that a lot of bereaved individuals can feel sometimes. Feeling that people don't want to talk about it, that it's upsetting, that it makes people think about their own potential for loss, their own mortality and therefore bereaved individuals can feel isolated or alienated.

Hamish Holewa: And just finally Jennifer, what are the practical implications of your research?

Jennifer Buckle: The practical implication really centres on the research ethics board process. So I understand completely the tendency on R.E.B.'s to focus on and maybe potentially overestimate the risks when assessing research proposals, on any topic including bereavement, because it's the R.E.B. who has the responsibility of approving proposals and standing by their decisions. Should a problem arise in a research project that an R.E.B. has approved, the project can come under scrutiny and the board that approved the project can come under scrutiny. So when you have this level of responsibility, it can certainly shift the focus more on the potential risks than the benefits. Even in this role however, an approach that assesses the full range of participants' experiences must be considered, so that we don't just overly focus on the risks. So there's increasing documentation in the research literature, about the benefits that participants note from their participation. Finally, and one of the things that we note in our research and other's have noted as well, is that bereaved participants have offered suggestions to minimise the potential for harm or risk. So it's important to consider their suggestions both in research design and in proposal review.

Hamish Holewa: Yes, absolutely, and some very powerful messages there. Well Jennifer, thank you for speaking with us today on IPP-SHR Podcasts.

Jennifer Buckle: Thank you.

Podcast Keywords

bereavement, psycho-social research, ethics boards

Research Notes: Living with Genetic Test Results for Hereditary Breast and Ovarian Cancer

2011-06-13T19:14:00.000-07:00

Interviewee

Rebekah Hamilton, PhD, RN, Department of Women, Children and Family Nursing at Rush University College of Nursing, Chicago, Illinois, USA

Article

Hamilton, R., Williams, J., Skirton, H., Bowers, B. (2009) Living with Genetic Test Results for Hereditary Breast and Ovarian Cancer, Journal of Nursing Scholarship, 2009; 41:3, 276-283

Summary

Dr Rebekah Hamilton conducted in-depth interviews via both email and telephone, in her study of women with high risk genes for breast and ovarian cancer. She describes the process she used to compare T1 and T2 data, to ensure that the responses given by participants using email had sufficient depth and breadth, and to gauge when she had reached data saturation. She says the benefits of email interviewing were that responses were more reflective and 'on point', with less tendency for interviews to wander off topic, and that time and money were saved because transcribing was not required. She says, however, that telephone interviewing enables comments made by participants to be followed up immediately by the interviewer, whereas, they may be lost in the time delay between emails in email interviewing.

Transcript

Michael Bouwman: I’m Michael Bouwman and in podcast #118, I interviewed Dr Rebekah Hamilton, Alpha Lambda, Associate Professor, College of Nursing, Rush University, Chicago, Illinois, USA, about her study and article: 'Living with Genetic Test Results for Hereditary Breast and Ovarian Cancer', published in The Journal of Nursing Scholarship, and co-authored with others listed on our website. her study used grounded theory in a longitudinal framework, and I began by asking her, how she went about analysing the results from Time 1 and Time 2?

Rebekah Hamilton: The comparisons actually occurred after the initial coding was done, from the second interviews (so Time 2 interviews). So for example, there were similar codes in both sets of data, and these are just examples of some of them. So, family impact is one code, sexuality, was a code. After I had coded from the Time 2 data, I could go back and look at the Time 1 data, and see what people said, and compare how people talked about it. So that gave us a sense of sort of where people were closer to the point of genetic testing, versus where they were after they had lived with the genetic tests for a while. That enabled us to do this comparison. And then really just reading the interviews from Time 1 and then reading the interviews from Time 2 and sort of getting the general gestalt of the two timelines.

Michael Bouwman: Ok, and for data collection, you used both telephone and email interviews? Do you want to describe the process used for conducting in-depth interviews over email?

Rebekah Hamilton: Now this is one of those fortuitous things that I basically developed when I did my dissertation study. I have a publication on that which i am sure is cited in this article. Basically, to do an email interview, first of all when a participant enrols in the study, I gave them the choice of either doing a phone or an email interview. When I described the email interview to them I told them it was like writing an essay question. That seems to be a universal experience, so, people seem to get the idea of what that’s like. The thing that’s important to clarify, if you do email interviewing at least in a grounded theory study like this, and most qualitative studies I suggest, is that what you are not looking for is yes/no answers. You want some depth and breadth to the answers. The way I would do that, is I would pose three to four questions at a time, and send them to the participant. They would answer those questions and send them back to me. I could then actually do, you know, a real quick and dirty bit of analysis on the answers they sent back to me, pose another three to four questions at a time, and send them back. So I did this typically four to five cycles of questions, of three to four questions. And participants really took a lot of time and effort to answer the questions, even thought the email interviews, the totality of them in terms of length, are much shorter than a phone interview. The thing that happens, when a person does an email interview and writes, obviously writing is a different form of communication, there’s actually a lot more reflection which they do on their own answers. They actually kind of do the first coding almost. So, I have found it really, number one, a very useful very practical means of doing interviewing, but also, you tend to get a good bit of depth of thought in this type of interviewing, where typically in a phone interview, you wander off the subject perhaps a bit more, which is fine. I mean that can have some usefulness in qualitative analysis as well, but the email interviews tend to be much more on point, and reflective, I would say. One point I would make, to not do, because I did this once too and it did not work, is, don’t send more than four to five questions at a time, or you begin to get very short answers. At one stage in the study, I sent, I can’t remember exactly, but I think I sent ten questions at one time, and they came back, I didn’t do that with many participants, I think three or four. But they came back with almost no real reflective thought in those answers. Another point I would make, one of the things that’s really nice about email interviews, is you don’t have to pay to have them transcribed, or you don’t have to take the time to transcribe them, which certainly, for graduate students, can be significant.

Michael Bouwman: Absolutely.

Rebekah Hamilton: The telephone interviews are much, much longer. I think the positive on the phone interviews, is that if something sort of catches your ear while they are talking, you can follow up on it immediately, where, with the email interviews, obviously you have to wait until you get that answer and then send back to them. Something might be lost in that time difference. I really can’t honestly say I ever felt that was much of a problem, but I can see where that’s a potential problem, but other than the length, verbal communication is different than written communication. When you compare them, the way I did my comparisons is, again, by analysing and coding and then comparing. Not comparing sections of text across the two different formats, but getting the analysis to the point where I had it cut into the codes, and then comparing, so that it wasn’t so much as comparing apples and oranges because the formats were different. I was then comparing similar experiences within a given code, and just the language may be a little bit different.

Michael Bouwman: Alright, and in your article you note that you reached data saturation in relation to health behaviours and adjusting to risk. Can you talk about this process and how you determined ‘saturation’?

Rebekah Hamilton: I had to think about this question a little bit more, and perhaps an example might make it easier to explain. I mean, typically in qualitative data, saturation is when you keep getting the same answer basically, over and over. If the listeners to this podcast actually read this article, you’ll see that it’s actually talking about only seven participants over two different times, so fourteen interviews total. So the saturation wasn’t so much in the terms of the numbers of participants, as it was in, as you ask a given question, you would get a particular answer. You adjust that question a little bit, you get a very similar answer, you adjust a little bit, sort of like moving down a scale a little bit and just adjusting the question. So for example, I might start at some part of the interview asking about their health behaviours, and they would answer that in some way, and then I might adjust that a little bit and ask them about their diet, or had they changed their exercise. So, you just move the question down a little bit, and hopefully, in terms of reaching saturation, by the end they’re saying basically the same thing they told you at the beginning, with just a little more detailed focus so that you’re not getting totally new data. So hopefully that explains that, that’s a little bit harder to explain I guess.

Michael Bouwman: Well thank you very much, Rebekah for giving us this insight into your research.

Rebekah Hamilton: You’re very welcome, i enjoyed it.

Podcast Keywords

genetic test results, cancer, data analysis

Living with Genetic Test Results for Hereditary Breast and Ovarian Cancer

2011-06-13T19:12:00.000-07:00

Interviewee

Rebekah Hamilton, PhD, RN, Department of Women, Children and Family Nursing at Rush University College of Nursing, Chicago, Illinois, USA

Article

Hamilton, R., Williams, J., Skirton, H., Bowers, B. (2009) Living with Genetic Test Results for Hereditary Breast and Ovarian Cancer, Journal of Nursing Scholarship, 2009; 41:3, 276-283

Summary

Genetic screening allows women to find out whether or not they carry high risk genes for developing breast or ovarian cancer in their thirties and forties. Most women who find that they do carry the genes, choose either frequent ultrasound, mammography and MRI monitoring, or to undergo surgery for breast or ovary removal, in an attempt to avoid cancer, but what are the psychosocial consequences of these screening and surgical procedures? This week, Michael Bouwman talks with Dr Rebekah Hamilton, who has found that women with high risk genes, continue to experience states of 'high alert', and are easily triggered into feeling vulnerable and worried, for years after their genetic testing. She says young women's treatment decisions are caught up in their decisions about relationships, children and career, with most women experiencing a sense of urgency about relationships and childbearing, and she has found that some women who choose surgery find that it affects their sexuality to a greater extent than they expected it would. Dr Hamilton recommends that clinicians and technicians become more aware of the special position these women are in, and refer them to people who can help them with decision-making.

Transcript

Michael Bouwman: I'm Michael Bouwman, and today I'm introducing Rebekah Hamilton, PhD, RN, College of Nursing, Rush University, Chicago, Illinois, USA. I am speaking with Rebekah about her study and article ‘Living with Genetic Test Results for Hereditary Breast and Ovarian Cancer', published in The Journal of Nursing Scholarship, and co-authored with others listed on our website. Would you like to begin this podcast with a brief overview of the gene mutation testing for individuals at risk of hereditary breast and ovarian cancer?

Rebekah Hamilton: Ok, the two identified mutations for hereditary breast and ovarian cancer, are called the BRCA1 and 2, or sometimes are pronounced Brac O1 and 2. Basically what these mutations do, is they significantly increase an individual's risk for developing both breast and/or ovarian cancer. Statistics are really pretty remarkable, in that the accumulated cancer risk for individuals that have the BRCA1 mutation, the breast cancer risk is as high as 57%. For the BRCA2 it's 49%. And then for the ovarian cancer risk, it's different for each mutation as well, with BRAC2 mutation carriers they're a higher risk, as high as 40% that develop ovarian cancer. And the BRCA1 as high as 18%. Individuals that have these mutations have a much higher risk of developing these cancers than the general population. And the other, perhaps most significant thing about these mutations is that when women do develop the cancers, they tend to develop it at a much earlier age, in their 30's and 40's as opposed to after the age of 50, which is more common for sporadic cancers. The fact that they do develop younger obviously impacts women at an earlier stage in life, and you know, creates a lot of different issues. The younger women, ages 18 to 39, and some of the issues, that knowing that they have these mutations, what issues they raise and some of the decisions then that they face in terms of either increased surveillance, with mammography and breast MRI's, trans-vaginal ultrasounds for ovary surveillance, or they also have the choices of prophylactic surgeries, both of the breasts and of the ovaries. So, you know, these are major decisions, and particularly face it in younger years for younger women, they tend to get caught up in decisions about relationships and children, and having a family and career and those sorts of things. So it does raise different issues.

Michael Bouwman: And your study uses a longitudinal framework in which you followed up participants sometime after receiving the genetic results. Participants responding to the knowledge of genetic vulnerability had an uneasy balance between being reassured and being on alert. What are the implications of this awareness?

Rebekah Hamilton: This I think was really, probably one of the interesting things of doing this type of study, where I talk to individuals closer to the time that they had their genetic testing, and then 3 1/2 to 4 years later. And the thing that we saw happen, is that, these women' never are not worried', it's a double negative you shouldn't say but, they're always thinking, the sense of risk is always present. It's always in the foreground for them. They can very quickly shift into a high state of alert. I had several interviews where a young woman, she'd known about her risk for several years, and she had done the increased surveillance and so forth, but she would hear a story then, about another young woman being diagnosed with breast cancer, and all of a sudden, her sense of risk and her sense of vulnerability, was really very heightened. And it can be very non-specific triggers. I mean, it doesn't really have to have anything to do with them per se. And so, as far as the implication of this awareness, number one, I think it never goes away for them. It takes very little for them to be tripped into a much higher state of alert and worry, about their own health, and they begin to lose a sense of trust in their own body. So, I think those are some of the implications; knowing about their risk and trying to balance this sense of being reassured, but also, it does put them in this state of higher alertness.

Michael Bouwman: Yes. Another implication, sexuality, or loss of sexuality, was a concern for many women. Could you talk about the impact a positive test screening had on this psycho-social aspect?

Rebekah Hamilton: On this question, I think we kind of need to think about the groups of participants that I interviewed. So, some of them were single women, you know, not in a relationship, didn’t have children. so obviously issues of sexuality, is a big issue. They become very aware of what they see is their difference from their peers. It tended to diminish their self confidence, you know, this idea of sort of getting out there and dating again, after they find out this information. Or, if they know they are at risk, and they made the choice to have prophylactic surgeries, I mean that's a very daunting thing to do. You know, now their breasts are not, quote, 'normal'. You know, they look different, they feel different. Typically, when women have their breasts removed in these types of surgeries, the nipple structure is also removed, so they don't have real nipples, they have like a tattooed nipple on. So, you know, they look different. They don't have the sensation, so the sexual arousal that can come from the breast is not present anymore. So it can have a very big impact on their sexuality, and that actually wasn't limited to the younger women. In my original study, I interviewed women over the age of 40. I mean one of them stated, if I knew the extent of the impact on my sexual response, I probably wouldn't have had this done.

Michael Bouwman: Right. And your participants also raised concerns relating to the risk of inherited disease for the next generation. Did this interfere with normal phases of the family life cycle?

Rebekah Hamilton: I don't really have too much data on the actual disruption of the family life cycle, but the data I do have certainly indicates that there's this increase sense of urgency, about having children, once they know they have this mutation. For example, a number of the young women that I interviewed had recently been married, and when they talked about having children, they said that they and their spouse had intended to have children but not so soon. Because part of the recommendations for these young women, are that they have a prophylactic oopherectomy, so they have their ovaries removed by the age of forty, or after their childbearing is complete. Well, when women are actually told this, what seems to happen is they have this sense that they really have to hurry up and have children. Even if they're in their mid to late twenties, it gives them this sense of urgency. For the unmarried women, there's this sense of, 'ok, we need to have children a little sooner than I thought we were going to have to do this. But, as you can imagine, for the women who are still single, it not only increases this sense of urgency about having children, but they didn't have a partner yet. I can certainly say that this sense of urgency was one of the more predominant findings.

Michael Bouwman: Understandably. Are there any other practical implications of your work, Rebekah?

Rebekah Hamilton: I think the thing that clinicians need to be aware of, is, how these young women are impacted in terms of how they perceive the choices they have to make. How they’re going to protect themselves from the development of cancer or the redevelopment of a second cancer, if they’ve already been diagnosed. So, they face the choice of this increased surveillance where they have a mammogram in the six month period, then a breast MRI. So these are all areas of increased surveillance that typically this age group doesn’t have to do at all. That in itself creates some difficulties for this age group in that, the clinicians sometimes are not sensitive to the fact that these young women really are in a different position. I had several participants who volunteered how hassled they were by radiograph tech’s, when they went in to get a mammogram. You know, they scoffed at them for being too young and their breasts being too dense, and wasting their time and money and so forth. So, again, an increased sensitivity that this is a special group. Young women that have this mutation really are at a significantly higher risk, and need to be assisted through these surveillance procedures, not hassled about them. The other side of that is, decision making in terms of whether or not they’re going to have these prophylactic surgeries, whether it’s a prophylactic mastectomy or prophylactic oopherectomy. I had very young women that chose both of those. I mean, I had as young as a twenty three year old choose prophylactic mastectomy, and I think the youngest woman I had who chose a prophylactic oopherectomy, was about twenty eight. That’s very young, and for a person like that to be flipped into instant menopause has significant consequences. Again, understanding that these young women need information, clinicians need to understand that they often carry with them a very significant family history of either breast or ovarian cancer that greatly impacts their own perceived risk. In our conversations with them, being certain that they understand that, if they’re in the twenties, the risk of developing cancer is relatively low, and in their thirties, it actually begins to increase but, you know, it’s not a 100% kind of thing. So, supporting them, in the decisions that they make, helping them think through the decision, and certainly from a nursing standpoint, making sure that the right consultations are made. And referring them to individuals that can help them make the decisions that they face.

Michael Bouwman: Well thank you very much for speaking with IPP-SHR Podcasts on this important topic.

Rebekah Hamilton: Thank you, Michael.

Podcast Keywords

genetic test results, cancer

Mental Health Nurses' Experiences of Schizophrenia in China and India

2011-06-13T19:11:00.001-07:00

Interviewee

Professor Louise Higgins, Professor of Psychology, Department of Psychology, University of Chester, UK

Article

Higgins, H., Dey-Ghatak, P., & Davey,G. (2007) Mental health nurses' experiences of schizophrenia rehabilitation in China and India: A preliminary study. International Journal of Mental Health Nursing, 16: 22- 27.

Summary

In this IPP-SHR Podcast, host Stasia Kail-Buckley talks with Professor Louise Higgins about her research exploring mental health nurses' experiences of schizophrenia care in China and India. Louise and Stasia discuss the issues relating to care within these cultures, and the similarities and differences between the western model of care and Chinese and Indian approaches. The interview concludes with a discussion of the potential for these findings to be incorporated into western mental health systems to improve outcomes for individuals with schizophrenia.

Transcript

Stasia Kail-Buckley: Introducing Professor Louise Higgins, Professor of Psychology at the University of Chester, United Kingdom. Louise is currently engaged with a number of Chinese institutions in further collaborative research in cross cultural psychology. Today I’m talking with Louise about her article, ‘Mental Health Nurses’ Experiences of Schizophrenia Rehabilitation in China and India: A Preliminary Study’, which she co-authored with Priya Dey-Ghatak and Gareth Davey. Hi Louise, welcome to IPP-SHR Podcasts, to start with could you talk about why you chose a qualitative methodology and the benefits of this approach.
Louise Higgins: One of the things about qualitative research is that it gives you lots of rich data and it avoids sticking western preconceptions into other countries especially if you use open-ended questions and it gives the people in the research, the participants, it gives them a voice rather than us giving them a tick box questionnaire that’s devised by psychology. And obviously, if you use qualitative data you can use it as a starting point to develop other ideas.
Stasia Kail-Buckley: Your article highlights the marked differences in attitudes, values and behaviours across cultural groups. Would you give an overview of the issues in regards to caring for a person diagnosed with schizophrenia in China?
Louise Higgins: It’s such a big problem. China has 1.3 billion people; it has possibly about 16 million people with psychotic illnesses. It only has about 110 thousand psychiatric beds, 13-14 thousand psychiatrists for the whole country. Whereas in the UK here we’ve probably got about 10 psychiatrists to 100, 000 people. In the USA it’s twice that. In China, it’s not even one psychiatrist a 100, 000 people. The training of psychiatrists in China is also something that we need to think about because during the cultural revolution in the 1980’s there was no training and some people came into the field who are still in the field who may not have had any training at all. First of all there’s the numbers of patients, the numbers of beds, the numbers of staff and the burden therefore falls on the family and this is very expensive. Then we’ve got the position of women in society in China. In the cities of course nowadays women are treated very much the same way as men but in the rural communities the position of women is perhaps not as good as it should be. China’s always had the tradition of medicine, of its own kind of medicine going back more than 2000 years. Psychiatrists and nurses I know in China will often start with traditional Chinese medicine if they have a health problem. When it comes to getting treatment, it must be the family to take people to see hospitals. After admission, treatment and diagnosis is pretty much like the West and drug treatment is like the West as well. There’s a little problem with overcrowding because again, lack of facilities, lack of resources and then there’s the issue of stigma. This stigma can affect the whole family; can affect the prospects of jobs and marriage and so on.
Stasia Kail-Buckley: And what differences did you find in relation to India?
Louise Higgins: Again, it’s a big country, very large numbers of people with psychiatric problems, not enough resources. There are wide urban-rural variations in provisions in both countries. In the big cities, there are fantastic services but the further out in the country side you go, the poorer the provisions. Stigma is very great in India; the cost is very great of having a relative with schizophrenia in India, not just paying for their care but also lost days at work, traveling to visit them and so on. Position of women is similar; I think we pointed out that often women in rural India get treated much later than men would. Families are so important in dealing with schizophrenics in both countries. In fact I’ve got a figure that in India, something like 90 percent of the mentally ill are actually living with their families whereas in the West, that might be the opposite. Most of the mentally ill leaving hospital will be on their own in the West. Treatment and diagnosis much like the West in both countries but when you come to think about schizophrenia you’ve got to realize because of the ancient philosophies in both countries, there might be a different starting point. And in both countries, government policy very much today is to put more money into mental health positions but obviously in developing countries this is very difficult, it’s like ‘Maslow’s need’ and if people are starving it’s much more important to feed them than to solve their psychiatric problems. Differences between China and India, one of the biggest ones is that in India the role of voluntary organizations is quite large and looking at people with mental health problems. There’s quite a big provision of private mental health care, expensive in India. There is a brain drain of course of Indian-trained doctors leaving the country, which doesn’t really seem to happen I think with China. In India, self-help groups and support groups, community out-reach workers and religious centers all have a part to play and China hasn’t really got into that sort of thing I think at the moment.
Stasia Kail-Buckley: Would you explain how your findings could be used by the Western mental health system to improve outcomes for individuals with schizophrenia?
Louise Higgins: We must never forget that these developing countries just simply haven’t got the resources we have to put into things and therefore in the developing countries it’s only the very sick people who actually ever get treatment and there is quite a lot of evidence that says that family involvement is crucial to rehabilitation from schizophrenia and in some ways the outcomes of schizophrenia are better in under developed countries where the family is much more involved in supporting the person. So one of the things we might learn from this is that in the West maybe we should try to involve family more. It might be possible to work on reducing stigma, although you see even in the United Kingdom here we have to have campaigns to try to reduce stigma about mental illness and maybe it just is very difficult to do that and general education through the mass media may be helpful. Obviously people could be working on women’s position in society and that would also help people with mental illnesses.
Stasia Kail-Buckley: Well thank-you Louise for giving us your time today, it has been a pleasure to talk to you.
Louise Higgins: Thank-you.

Podcast Keywords

mental health, psychosocial, China, India, nurses' experience, qualitative methodology

Research Notes: 'Kidney Disease and Health Promotion': A Community Perspective

2011-06-13T19:11:00.000-07:00

Interviewee

Caroline Jennette, Social Research Specialist, UNC Kidney Centre, University of North Carolina, USA

Article

Jennette L.E., Vupputuri S., Hogan S.L., Shoham D.A., Falk R.J., Harward D.H.(2010) Community Perspectives on Kidney Disease and Health Promotion in Rural North Carolina, USA, Rural and Remote Health 10 (online), 10:1388

Summary

Caroline Jennette and her colleagues held seventeen focus groups for people in populations considered to be at high-risk for developing kidney disease, across five counties in North Carolina, US. She describes the techniques she used to select and recruit participants, and to ensure that quieter focus group members were given an opportunity to speak during focus group sessions, rather than being overpowered by others. She also talks about the use of 'open coding' and simultaneous analysis to determine data saturation.

Transcript

Hamish Holewa: Hi, I’m Hamish Holewa, and this is Research Notes. Research Notes is a complementary podcast which explores the practicalities, issues and methodology associated with psycho-social health research. For podcast one-hundred and seventeen, I spoke to Caroline Jennette about her article and study titled, ‘Community perspectives on kidney disease and health promotion from at-risk populations in rural North Carolina, USA. Hi Caroline. Your study used 17 focus groups across five different counties, all with a differing number of participants for your primary data gathering activity. How did you determine participation inclusion for the focus group?

Caroline Jennette: We mainly tried to recruit community members who were at greater risk of developing kidney disease. So for example, we focussed on recruiting African Americans as they’re four times more likely to develop end-stage kidney disease. And we also used counties that had a high prevalence of patients on dialysis as the signal that kidney disease was a burden in those counties. We wanted to also help some groups of community members who may have an impact on the health of their communities, so we help several groups with allied health students and health care professionals. And in terms of the number of participants we had in each group, that was sort of just based on how many we could get to come – a lot of the recruitment was done at a community based level. So we put the word out there and tried to get as many people as we could.

Hamish Holewa: And in your focus groups, group dynamics, in which people or certain groups of people are uncomfortable speaking, or over-powered from speaking from other members, did you employ any strategies to lessen these effects within the focus groups?

Caroline Jennette: We did. The one thing we like to start the groups with, introduction, then introductory questions. So this helps break the ice and familiarise the participants with each other. When dealing with a group overpowered by one or a few speakers, it’s important to actually listen and watch for those trying to speak, to make sure you’re able to ask them what you want to say, you know, after one person has finished. And then for groups that were very quiet, the technique that we used was just silence. So if the moderator can hold out, participants will eventually start to talk, if only to remove that awkward silence.

Hamish Holewa: Right, so it’s up to the skill of the facilitator and moderator as well.

Caroline Jennette: Yes, indeed.

Hamish Holewa: And also, in your methodology you note that participants were given a $20 gift card for participation. Did you believe this raised participation levels, or were participants not informed of the gift card until after the actual participation with the focus group? Are there any ethical implications associated with paid for participation?

Caroline Jennette: Participants were typically aware that there was a gift card. We included that on the study fliers, but because the recruitment was primarily community based, in some instances it was sort of a pleasant surprise. I think the gift cards certainly helped participation, but we felt that the amount of the gift card, which was $20, was enough to reimburse the participants for travel and time, but not high enough of an amount to be too coercive.

Hamish Holewa: And, finally, in your article you mention you used a process of simultaneous coding and analysis to determine data saturation. Do you just want to talk about this process of reaching data saturation and determining the appropriate point of ending the data gathering through the focus groups?

Caroline Jennette: Sure. So in our case, what we did was, three of the study investigators, including myself, went through the first two transcripts of the first two groups using a process called ‘open coding’. So basically, coding any terms or themes that came along. Those three investigators then got together, compared notes, then came up with a primary list of codes and themes that was used to code within our qualitative software program. Additional codes were added to the list, but this initial list provided us with a good starting place. And probably after three or four more groups were transcribed, we had pretty much reached saturation, but it can be somewhat subjective when we were dealing with several types of focus groups, so we kept going. And actually because this project was part of a process to collect data that would help us with our outreach effort, we were able to do more focus groups than a typical research project could. And after seventeen groups, we definitely felt like we were at a good place for data analysis and reporting of that data.

Hamish Holewa: Yes, absolutely. It’s quite a large study.

Caroline Jennette: Yes.

Hamish Holewa: Thanks for sharing those insights with us today on Research Notes.

Caroline Jennette: Sure, thank you so much for having me.

Podcast Keywords

kidney disease, health promotion

'Kidney Disease and Health Promotion': A Community Perspective

2011-06-13T19:09:00.000-07:00

Interviewee

Caroline Jennette, Social Research Specialist, UNC Kidney Centre, University of North Carolina, USA

Article

Summary

Once a patient with kidney disease reaches end-stage, treatment options for their survival are limited to dialysis or a kidney transplant. If the disease is detected earlier, end-stage can be avoided or delayed with appropriate treatment. This week, Hamish Holewa talks with Caroline Jennette, who studied high risk populations of rural North Carolina, US, and found that although people knew about the function of kidneys, and had relatives on dialysis, many were unaware that the main risk factors were high blood pressure and diabetes, and many avoided screening because they felt uncomfortable communicating with specialists, feared dialysis, and believed they would be unable to afford treatment. Ms Jennette recommends outreach activities that focus on the positives of prevention, stressing that screening can actually help catch kidney disease early, and prevent the need for dialysis. Ms. Jennette and her colleagues have developed information cards, which list risk factors, common kidney disease tests, and patient screening results, if available, so that people can approach their doctors armed with medical terminology and the confidence to initiate a conversation about their kidneys. Ms Jennette also describes the finding that surprised her most: the department store chain, Wal-Mart, was felt by study participants to be the ideal kidney screening site.

Transcript

Hamish Holewa: Hi, I’m Hamish Holewa, and this is IPP-SHR Podcasts. For this week’s podcast I’m talking to Caroline Jennette Social Research Specialist at the UNC Kidney Centre, University of North Carolina, USA. We are speaking with Caroline about her study and article titled, ‘Community perspectives on kidney disease and health promotion from at-risk populations in rural North Carolina, USA, which is published in Rural and Remote Health, and co-authored with others listed on our website. This study is based upon a Kidney Education Outreach Program. Do you just want to briefly describe the program and the three principles that are ascribed to promoting learning, with understanding?

Caroline Jennette: Sure. So, the primary goal of the Kidney Education Outreach Program, or KEOP for short, is to educate at-risk North Carolinians about their risk factors for developing chronic kidney disease, which can lead to end-stage kidney disease, which is a condition that requires dialysis, or transplant for survival, and the State of North Carolina actually ranks ninth in the United States for overall prevalence of end-stage kidney disease. And progression from chronic to end-stage kidney disease can often be slowed, or even stopped, with early detection and appropriate disease management. So what we do at KEOP, is we work to increase awareness, by 1. assessing preconceptions of kidney disease by utilising focus groups, which is what was done and reported on in this manuscript; 2. delivering information in formats that promote active learning, through interactive community based informational sessions; and then 3. Providing the opportunity for citizens to actually be screened for kidney disease and be provided with one-on-one counselling and written summaries of results and recommendations for further disease management if necessary.

Hamish Holewa: And, in your study you looked at the importance of knowledge regarding kidneys and kidney disease. What was the participant’s knowledge of the disease, and how does that influence health related behaviours?

Caroline Jennette: What we found was, study participants typically knew where the kidneys were in the body and they knew what their typical function was, including acting as a filter, and partly as a result of holding focus groups with at-risk populations, many participants had friend or family members who were actually on dialysis, and typically associated their knowledge of kidneys with dialysis. When dialysis was mentioned, it was consistently viewed as a negative process, and a burden on both dialysis patients and their families. We also asked participants what they thought the risk factors for kidney disease were, and then their answers routinely focussed on general lifestyle factors, including obesity, alcohol intake, sugar intake. Participants did express a need to better understand risk factors, and many did not actually associate kidney disease with its primary risk factors, which are high blood pressure and diabetes.

Hamish Holewa: Yes, and also in your analysis, fear was mentioned by a majority of focus groups as a barrier to health care. Do you just want to explain that notion, and the issues this rose with service delivery?

Caroline Jennette: Sure. So fear came up quite often as a barrier to seeking appropriate medical care. And for many participants, fear was manifested in the anticipation that they would not be able to afford to pay for things, like subsequent treatment and procedures, or be able to access transportation to see the specialists that some diagnosis would require. And regarding service delivery, participants expressed that they weren’t really comfortable interacting with physicians, and in some instances were afraid to question what their physicians told them, even if they didn’t understand or disagreed.

Hamish Holewa: So there is two kinds of fears there, I suppose; one about accessing service delivery, and then, the actual consultation?

Caroline Jennette: Correct.

Hamish Holewa: Yes. And, In your article, also, participants noted some novel outlets for screen locations and community health outreach. Do you just want to elaborate on those outlets and community outreach programs?

Caroline Jennette: So in terms of screen locations, we were a little surprised at how much Wal-Mart came up as a possible screening place. And Wal-Mart is actually a chain of large department stores that often have a grocery store attached as well. And especially in rural areas, they’ve become the place where people travel to shop. Other places that were mentioned, were churches – those were mentioned frequently. This is not as surprising to us, though, because in the South, Churches are often the hub of social activity in rural communities. And many actually also have their own health Ministry. Some participants also noted that work site screens would be helpful, especially if employers allowed time away from work to participate.

Hamish Holewa: Right, ok then, excellent. And, what are the practice implications arising from the study?

Caroline Jennette: Well, in terms of community based outreach and education, there are a couple of implications that we think can be called from participant responses. For one thing, I think our results highlighted the need for better interaction between patients and health care providers. So we have many study participants explain that they couldn’t open the lines of communication with providers, because they didn’t know how to start, or what questions they were even supposed to be asking. So as a result of this, we now actually give out laminated cards at screenings and other educational sessions, with risk factors and common tests for kidney disease, if they go to the screening, along with the copy of their screening results. And so what this allows them to do is, to go into their doctor’s office armed with some medical terminology and an understanding of what their risk factors for kidney disease are. Another prominent implication from the study is, really the need to focus on positives, to override the fear of disease, especially when it comes to end-stage kidney disease. So we had a lot of participants who had experiences with family and friends on dialysis, and they expressed to us that they were afraid of ending up in the same place, and they may actually stay away from testing to remain in denial. So in our outreach activities, we focus on the positives of prevention, and we stress that screening for kidney disease can actually help catch the disease early, and help prevent them the need for ever having to go on dialysis in the first place.

Hamish Holewa: Yes, a good goal as well. Well thanks Caroline for speaking with us today on IPP-SHR Podcasts.

Caroline Jennette: It’s my pleasure, thank you.

Podcast Keywords

kidney disease, health promotion

Research Notes: 'Healing Communication': Clinician-patient Communications

2011-06-13T19:08:00.000-07:00

Interviewee

Dr Richard Street, Professor, Communication Department Head Department of Communication, Texas A&M University, Texas, USA

Article

Street, R.L.Jr, Makoul, G., Arora, N.K., Epstein, R.M., (2009) How does communication heal? Pathways linking clinician-patient communication to health outcomes, Patient Education and Counseling 74: 295-301

Summary

Dr Richard Street describes how he dealt with the fundamental challenge of measuring communication in his study of clinician-patient communication and health outcomes. He describes the limitations of using self-report measures and traditional qualitative coding methodologies, and talks about the importance of striving to 'capture' communication, by observing what people are doing, in relation to what the communication appears to be meaning to the people who are then going to act on the communication. Dr Street also talks about the strategy he used to model the pathways leading from communication to health outcomes, and gives suggestions on how to conduct a selective literature review, based on a conceptual model which gives structure to the available literature, rather than allowing the literature to become overwhelming.

Transcript

Michael Bouwman: I’m Michael Bouwman and in podcast #116, I interviewed Dr Richard Street, Professor, Communication Department Head Department of Communication, Texas A&M University, Texas, USA about his study and article: 'How does communication heal? Pathways linking clinician–patient communication to health outcomes. For this research note, I began by asking Richard to start by explain why, from a methodological perspective, clear links between effective communication and direct health outcomes are hard to produce?

Richard Street: The most fundamental challenge we have, is 'How do you measure communication?' Communication is probably one of the most difficult behaviours to measure, because of trying to find the relationship between what one does, and what that means. Let me give you an example of a challenge here. You know, I’ve done these tests, and it appears as though you have bronchitis. So, that’s an act of giving information. Well, that might be meaningless to the patient who says, you know, I sort of knew I had that. I mean I’m hoarse, and so, well, thanks for confirming what I already knew. To the patient who is afraid that they had some recurrence of cancer, or that their cancer may have metastasised, they would say, oh, that’s the most wonderful news that could have happened to me. For the opera singer that’s going to be singing that night, who says, you mean there’s nothing I can do for it now. No, you’re e going to have to wait several days for it to get better, it could be dreadful news. SO, here you have an act that a person has done in terms of communication, how do we capture the perceptual salience of that to the person who’s the message recipient? The two most common ways of doing it are doing a patient’s perceptions via self report. So yes, ‘I thought that doctor was informative’, or, ‘that doctor was really too cold and impersonal’. So I can evaluate the doctor’s performance in that regard, as a communicator. The problem then, is linking those judgments to specific things the clinician may have done, and it’s sometimes hard to know what that would be. Conversely, you could have a situation where that doctor gave a lot of information to the patient where you have somebody coding the discourse, and so, ‘yes, that’s an act of giving information, and that’s an act of giving information, and yes, all the steps of information giving were satisfied there in terms of giving treatment options and talking about risks and benefits, etcetera, etcetera’. So you may say, from a coding point of view, yes, the doctor met the criteria for informed decision making, and then the patient is over here saying, ‘I didn’t understand anything that they said’. Part of the challenge is, how do we measure communication and capture it, so that we can observe what people are doing in relation to what it appears to be meaning, to the people who are then going to act on that communication later on. And there have been a number of studies that have shown that patients thought that they were engaged in shared decision making; they were actively involved in the encounter. Observers of that same encounter, said no, that doesn’t appear to be the case at all, but in the patient’s mind, they were, but in the observers coding, they were not. So that’s a challenge, and we’re trying to make some progress there, but we’ve got a ways to go. The other challenge is, typically health outcomes, you assess those after the consultation is over at some point in time; days, weeks, you know, months even. A lot happens from the time of the consultation to, when you do that assessment for a health outcome. The thing is, if we’re assuming communication is going to have a powerful effect on that outcome, then it may have a particularly powerful effect, because it has to last, through a period of time when many other factors may come into play. So, in my hypertension example, taking medication to manage hypertension, you may say, yes, it’s very straight forwards, the patient knows, they’re on their way, and then they go off on a trip somewhere and they lose their medication, and they don’t have a way to get it back. So, you didn’t account for that. In the encounter, everything worked alright, but things started happening. You know, that’s the one thing that happens sometimes, when you talk about lifestyle changes, and behavioural changes where the patient is going to change their diet or their exercise program. They have lots of motivation after they leave the doctor, but then things happen. You know, they get back home and they have all the stresses and problems, and they get back into old habits. So the other methodological challenge is from a research design point of view. In order to try to model the pathways and the things that need to be in place between the end of the communication encounter, or what happens in the communication encounter and then the things that can contribute to facilitate or interfere with the health outcome that you’re interested in. So it’s simply, using design to try to model that pathway over time.

Michael Bouwman: And Richard, your study uses a literature review to illustrate ways in which theory can inform communication practice. What strategies did you use to find the associated articles, and what criteria did you use to affirm an adequate representation of the literature?

Richard Street: First of all, let’s talk about the strategies. First through Pubmed, or Medline, or any data bases that you might have, you’ll do a search first of all through keywords, terms, mesh headings and things like that. That then will generate you scores if not hundreds of articles, and then so what you have to do, is, if you’re really going to be systematic like that, you then cull through those to find one’s that are relevant, that meet you’re criteria. Now that’s what one might do in a more comprehensive literature review. A shorter cut to that is to do a review that’s more representative. You have an idea of all the areas you need to gather research around. So what you do is you then selectively go through that literature in order to find the articles that pretty much address the issues that you’re interested in. And I mean that selectively, not in terms of bias, in terms of just supporting a particular point that you want to make. You know, you may have ten articles that say sort of the same thing, and have the same kind of finding. You really only need to have two of them, to make the point that you’re going to make. So what you do is to try to lessen the burden of the literature that you’re dealing with by trying to be more selective, and get articles that are more ideally suited for what it is, the questions that you’re asking and trying to answer. In terms of what you do to try and ensure adequate representation, the main thing is through that more extended search, and the information that you get, make sure there are not any major gaps that are being left out of your literature review. So in that article itself, one of the gaps that might have been there in my article, were some of the research that’s done on neurological kinds of mechanisms that might relate to biological processes that are going to affect how resistant the body might be in terms of fending off disease or something like that, in other words, you know, I left off the neurological biological elements of body responses and immune systems, and thing like that which some research indicates talk can contribute to, because you know what? It was just outside the scope of what I wanted to do in this article.

Michael Bouwman: Yes, and were there any other challenges with conducting and writing up a literature review?

Richard Street: You can get so overwhelmed with so many articles that have been written on a topic that the challenge really becomes, how do I sort though all of this, and get a manageable amount? The other challenge you have is that, I really think people ought to approach a literature review, based upon the conceptual model in mind of the issues they want to talk about. And therefore, you organise your literature around the concepts that you want to focus on. So in my particular paper, what I am interested in are, communication that relates to some key functions of what you want to accomplish in a medical consultation. And then, I am looking for outcomes of various sorts that shows relationships between communication correlations. And then I want to maybe look at some literature, that shows relationships between communication and proximal or intermediate outcomes, so then I can make the case of how these pieces of the puzzle fit together. So I often come with a fairly well informed conceptual model in mind, and then organise the literature around that. That doesn’t mean you’re not going to refine or revise that particular model that you’ve got. You still certainly ought to be doing that; you learn new information and new evidence, but at least that’s your starting point. If you start without having that in mind, let’s see what the literature says, if you don’t impose a structure on it to make sense out of it, you can be completely overwhelmed. So you are doing a literature review for a purpose, and that purpose helps you work your way more efficiently through the data. If you don’t have that, that’s going to be a challenge. If you do have that, it will help make your job a lot easier.

Michael Bouwman: Well thank you Richard, it’s been a pleasure. Thanks very much for talking with us.

Richard Street: Well it’s been a pleasure here as well, thank you.

'Healing Communication': Clinician-patient Communication

2011-06-13T19:06:00.000-07:00

Interviewee

Dr Richard Street, Professor, Communication Department Head, Department of Communication, Texas A&M University, Texas, USA

Article

Summary

A clinician discussing treatment options with a non-Hodgkin's lymphoma patient might suggest eight rounds of chemotherapy, explaining that it's been proven to be the most effective treatment for most people, but if the patient's aunt died, shortly after receiving chemotherapy for the same condition, this might affect the patient's willingness to agree to such a treatment plan. What can the clinician do to reach a 'shared understanding' about treatment options with their patient? And what steps can be taken by both the doctor and the patient to ensure that the decision reached is a quality one? This week, Michael Bouwman talks with Dr Richard Street, who describes strategies clinicians can use to bring the patient's perspective, including their fears and values, into consultations. He also shares his findings about patient side of communication, stressing that the the most important thing patients can do is 'speak up': ask questions when they don't understand something; express opinions if they are uncomfortable with something; and share their preferences with their doctor. Dr Street says this type of communication leads to agreements that work best for patients, and it helps patients to stay committed to their health plans, leading to better health outcomes.

Transcript

Michael Bouwman: I’m Michael Bouwman and today, I'm introducing Dr Richard Street, Professor, Department Head, Department of Communication, Texas A&M University, Texas, USA. I'm speaking with Richard about his study and article: How does communication heal? Pathways linking clinician–patient communication to health outcomes, published in Patient Education and Counselling, and co-authored with others listed on our website. Research that explores the link between communication and direct health outcomes, often reports that patient-centred communication is desirable for patient/physician communication. Could you provide a brief overview of what the literature says constitutes effective, or ‘good’ communication?

Richard Street: I think an important point to remember, is that effective communication really depends on the perspective of the person making the judgment about communication. Let me just give you an example, right quick, before, then I’ll give you a definition of what we’ve come up with for patient-centred communication, that we consider a good model. You can have a situation where a patient may think very positively about the encounter that they had with the physician. They think that the doctor seems interested in them, and they’re taking care of them, and they feel like they’ve received good care. On the other hand, you could have someone watching that conversation, saying, ‘Yes, that’s all fine and well, but you know there are a lot of elements of what you ought to do to make informed decisions, and this doctor is not going through all the steps that they need to go through in terms of adequate information, giving options for treatment. So really communication depends on one’s perspective, whether it’s a clinician, a patient, someone observing the encounter. That’s a long way of getting to what we consider a fairly safe definition for patient-centred communication. It’s communication that tries to bring the patient’s perspective into the consultation. Doctors can provide better care when they have a better understating of where the patient’s coming from, so you want to bring their views and beliefs and values into the consultation. You want to try to understand the patient in the life world of which their experiencing their health and well being. You want to involve patient and care to the extent to which they want or need to be, and ideally, you want to reach a shared understanding of the problem and of the treatment plan, so that doctor and patient are on the same page. And then, you want to make a decision, say for treatment, that’s based upon the best clinical evidence, that’s consistent with patient values, and that’s feasible to implement.

Michael Bouwman: Makes sense. And your article proposes seven pathways towards health outcomes from communication. And one of those is titled, ‘patient knowledge and shared understanding’, and that mentions clinical evidence being available in the form of probabilities and statistics, while patient understandings are often idiosyncratic and based on personal factors. Could you talk about that divide?

Richard Street: That’s what’s often called, the distinction between ‘analytical reasoning’, thinking about the scientific evidence logically, the probabilities associated with certain actions, in contrast with what we might call, ‘experiential reasoning’, where we think about what personal experiences a person has had as it relates to their health. So doctors come into the consultation, often armed with clinical evidence based upon probabilities of some sort. Patients come into the consultation often with the sense of, ’Here’s my health, how I understand it; here’s how I understand similar things that have happened to my friends and family’. So a doctor may come in for a patient, let’s say they have non-Hodgkin's lymphoma, and talk about the only treatment that works best for this, and that’s been by far the most effective for most people, eight treatments of chemotherapy, and the patient may say, ‘Well, actually, my aunt had chemotherapy, and it killed her. She never got better, and she just died shortly after the treatments, and I think it was because of that’. And so what doctors and patients have to do, is they have to get on the same page. That’s where we get into the idea of that notion of ‘shared understanding’. You’ve got to help the patient understand the clinical evidence and the probabilities and the uncertainties that might be associated with different treatment choices, whereas the doctor needs to understand where the patient is coming from with regard to what their fears and values are, so that together they can come up with what we call, ‘good decisions’ based on clinical evidence, juxtaposed with the patient’s values and preferences. The more that we can make doctors understand patients better, patients be more literate, there’s a better opportunity for them to come to agreement, on a plan that works best for the patient. The patient can stay committed to that plan, and then ideally that contributes to the better health outcomes.

Michael Bouwman: And you mention this is one of the seven pathways titled – ‘high quality decisions’. What are the factors associated with reaching this outcome?

Richard Street: What counts as a quality decision is a subject of some debate. You know, from a pragmatic point of view, you would say, well, it was a good decision, if the patient got better. Probably wasn’t a good decision, if they didn’t. That’s a little bit too simplistic because it is all retroactive before you make the judgment. You then think that, at the point in time a decision is made, what could count as a high quality decision, one that gives the patient the best chance of having the best outcome. And so this is where when we talk about, the pathway related shared understanding in patient knowledge, that deals more with the fact that, what the patient knows about their health, and how to take care of themselves, and what they need to know with regard to actions that they may need to take in order to treat a condition. The high quality medical decision really involves more of that collaborative process through which the doctor and patient engage in. Communication that would be of high quality, when you consider the clinician’s point of view, saying, this is probably a good decision based upon the clinical evidence. The patient’s thinking, it’s also one that I am willing to live with. And then, if you think that it is indeed the best evidence, and the patient is happy with it, and they both recognise that, and it’s something of course that the patient can do – it’s certainly feasible for the patient – then I don’t think you can ask for anything other than that. The other thing to understand about decisions, are not only that you made a decision at a point in time, but also in the future, you follow up, to find out how the decision you made is progressing, and whether you need to make any adjustments on the things that you decided, and it’s a continual process, not necessarily a onetime thing. But a lot of decisions are made over time.

Michael Bouwman: Fantastic. And lastly Richard, what are the practice implications of your research?

Richard Street: There are several practice implications. One is, what communicative strategies might doctors and patients use, in order to try and achieve patient-centred communication. Part of it would be trying to learn these communicative practices related to how you deliver clear, understandable explanations, how you’re a good listener, how you plan for, you know, the course of care and follow up, and things like that, and also engage in things like checking for understanding, of how well the patient understands the information you’re giving them. Those are some communicative practices that clinicians might learn, so that they can be closer to achieving elements of the patient-centred communication that I talked about earlier. The converse of that however, is on the patient’s part. One of the most important things that they can do is speak up. If they don’t understand something, they’ve got to ask a question. If they’re uncomfortable with something, they’ve got to express that particular opinion. If they have a preference, they’ve got to share that with the doctor. So the challenges communicatively are a little different, because with patient’s, it’s mostly about speaking up. The other practice implication is that the doctor needs to think about, ‘What outcome am I interested in?’. Let’s say my outcome is interested in a patient who has high blood pressure readings, the last several times they’ve been in my office. We can never decide if it’s really high blood pressure or not, but the patient seems to think it’s not a problem. I seem to think that it is. What I need to think about is, ‘What am I going to do, in order to convince the patient that there’s a problem, and that we ought to perhaps try medication to treat this condition’. And so by thinking a little proactively, you can focus on some things regarding the patient. You understand the risks of hypertension, even though you don’t feel them. “Let me hear your thoughts about taking medication, and what do you know about high blood pressure medicine. Let’s reach agreement on what to do. Let’s develop an action plan on how we’ll treat this. You may even say something like, ‘Why don’t we just try this medication just for a while and check your blood pressure readings, and here’s a home blood pressure monitoring system, so that you can keep track of this?’ And also, there may be a whole host of things a doctor might do, thinking that the pathway to the patient’s hyper tension control is the appropriate medication, taken appropriately. So with that in mind, what do I need to do in order to have us come to that agreement?

Michael Bouwman: Okay, well thank you for speaking with us today on this fundamentally important topic. Definitely, good communication is a lot more than bedside manner.

Richard Street: Very good. Thank you very much.

Podcast Keywords

doctor-patient communication, health consumer advocacy

Research Notes: 'Last Contact': Detection of Suicide Risk by GPs: A Report from Slovenia

2011-06-13T19:04:00.000-07:00

Interviewee

Dr Saskar Roskar, Institute of Public Health of the Republic of Slovenia, Ljubljana , Slovenia

Article

Rodi, P.M., Roskar, S., Marusic, A. (2010) Suicide Victims Last Contact With the Primary Care Physician: Report From Slovenia, Int J Soc Psychiatry 2010; 56; 280

Summary

Dr Saska Roskar talks about how she was able to access the records of people who had committed suicide from the Slovenian National Mortality Database, and match these death records to the personal medical records held by general practitioners, a search made simpler than it would have been in other countries, by the fact that the Slovenian medical system requires each patient to have only one general practitioner. She describes the process of searching the records for the variables she was interested in: date of last visit to the general practitioner, medical complaint, and medical reasons for last visit. She also discusses the need to ensure strict confidentiality and consider ethical implications when dealing with such a sensitive subject.

Transcript

Hamish Holewa: Hi, I’m Hamish Holewa, and this is Research Notes. Research Notes is a complementary podcast which explores the issues, practicalities and methodologies associated with conducting psycho-social health research. For podcast one-hundred and fifteen, I talked to Saskar Roskar, about her article and study titled: Suicide Victims’ Last Contact With the Primary Care Physician: Report From Slovenia. Your study involved the analysis of medical death certificates to determine gender, age and suicide. Is this data actually easy to obtain in Slovenia? Do you gain access through a national database?

Saska Roskar: In Slovenia, the system is such that the original death certificate from whole Slovenia is sent to the National Institute of Public Health. The data from the death certificate, including among other social demographic information, causes of death and in the case of suicide, also the method of suicide, are then entered into the Slovenia National Mortality Data Base. This data base is exactly where we obtained the data for our suicide victims from. We searched the mortality data base for all cases of suicide from the region of our interest to obtain the data. Basic data from the National mortality data base, like numbers of suicide and so on, are usually easy to obtain via the statistical office at the Institute of Public Health. Basic data from the National Mortality Data Base, like numbers of suicides and so on are usually easy to obtain via the statistical office at the Institute of Public Health if the purpose of the use is specified, for example if a person specifies that they use the data for disease research, or something like that. If any other more detailed data is needed, then this requires more additional information, but in every case the anonymity of a person is never compromised. In this case, in the case of our study, given the fact that two out of three researchers involved in the study were employed by the Institute, it was somewhat easier for us to obtain the data given the fact that we work with this data base practically every day.

Hamish Holewa: Right. And your study involved linking persons listed on the death certificate to their personal medical records which were recorded at the primary health care physician’s office or institution. How did you go about linking those people from the death certificate to their personal medical records?

Saska Roskar: Well, firstly we identified all suicides in the National Mortality Data Base within the region of our interest. Then we matched those persons, with their personal medical records, and within those personal medical records we searched for all the variables we were interested in: the date of the last visit, the complaint, medical reasons for the last visit, and so on. We needed to do this because actually it was the aim of our study. And the personal medical records are archived for ten years after the death, and this meant a lot of searching to do. We were able to identify 73% of personal medical records of included suicide victims. For the remaining 27% of cases we were not able to identify medical records. I might say the linkage enabled us to see that more suicide victims sought help for mental health problems than was the case in the control who sought more help for physical complaints, vaccinations or other symptoms. And this finding we can build on as previously discussed.

Hamish Holewa: Yes, interesting. That’s a good participation rate, 73%. In Slovenia, do most people go to the one primary care physician, or is the primary care physician alerted to their death alerted to their death after the suicidal act?

Saska Roskar: In Slovenia, every person has either his or her own primary care physician. If a death has occurred, their primary care physician is informed about the death of his or her patient.

Hamish Holewa: Yes. Like in Australia, a person might have one primary care physician but might have ten or so and it is not routine once a death has occurred to actually notify the primary care physician, that’s all.

Saska Roskar: No, no, no, in Slovenia the primary care physician would be notified of a death of his patient but if, for example, a patient would attempt suicide, it would not be necessary for the G.P. to know this. That’s the problem. The G.P. does not know the whole history of his patient. If the G.P. would know, for example, about all previous suicide attempts of his patient this would again mean another step towards a better prevention, because previous suicide attempts increase the risk of new suicide attempts.

Hamish Holewa: Yes, and so In Slovenia it expected that one person has generally just one G.P.?

Saska Roskar: Exactly. Actually the G.P. has a gate keeping role. If you want to go to a higher level of the health care system, if you want to be referred to a specialist, the G.P. is the one to refer you to the specialist.

Hamish Holewa: Yes, absolutely. Are there any ethical implications associated with this work?

Saska Roskar: All researchers should respect the privacy of the data we deal with. There was a panel of a doctor and the principal investigator who monitored the whole process and ensured the confidentiality throughout the process. Suicide always is a sensitive issue to deal with. When dealing with suicide, when researching suicides, when working with suicidal patients, there are always ethical dilemmas which need to be taken into account. That is for sure. It is not only the suicide victim who is included. We also have to bear in mind that the suicide victim has relatives who are suffering due to the death and we also have to keep them in mind.

Hamish Holewa: Well, thank you very much for speaking with us today on Research Notes.

Saska Roskar: Well, thank you for inviting me.

Podcast Keywords

suicide prevention, general practitioners

'Last Contact': Detection of Suicide Risk by GPs

2011-06-13T19:02:00.000-07:00

Interviewee

Dr Saskar Roskar, Institute of Public Health of the Republic of Slovenia, Ljubljana , Slovenia

Article

Rodi, P.M., Roskar, S., Marusic, A. (2010) Suicide Victims Last Contact With the Primary Care Physician: Report From Slovenia, Int J Soc Psychiatry 2010; 56; 280

Summary

In the months and weeks leading to a person's suicide, they are much more likely to visit their general practitioner (GP) than people in the general population, and yet GPs often do not detect the suicide risk, or are reluctant to ask about suicidal ideation, because they are concerned that this could trigger suicide. This week, Hamish Holewa speaks with Slovenian researcher, Dr Saska Roskar, who believes GPs need training to help them identify depression and become skilled at asking patients about suicidal ideas or intention. She says education programs should include theoretical information about the signs of depression, and risk groups for depression and suicidal behaviour, as well as practical guidelines for treatment and ensuring patient compliance. She stresses that GPs need to pay special attention to patients who keep returning to them with physical complaints, such as back pain which is not responding to medication, because the physical complaint may be masking depression. Dr Roskar also recommends multi-faceted interventions, such as telephone care management because they enable better patient follow up, improve concordance, and work well in busy primary care settings.

Transcript

Hamish Holewa: I’m Hamish Holewa and for today’s podcast I’m speaking with Dr Saska Roskar, a researcher in the Institute of Public Health of the Republic of Slovenia. I am speaking with Saska today about her article and study titled, ‘Suicide Victims’ Last Contact With the Primary Care Physician: Report from Slovenia’. Published in the International Journal of Social Psychiatry, and co-authored with others listed on our website. Hi Saska, thank you for speaking with us today. Your findings indicate that compared with the general population, suicidal persons frequently seek contact with their primary care physicians prior to the actual suicidal act. Do you want to just give our listeners a brief overview of these findings?

Saska Roskar: Sure. Speaking in general, let’s say the decade preceding suicide, suicide victims are reported to be in more frequent contact with the primary care physician than their matched counterpart, for example. And this particularly found to be true for the months and the week preceding suicide. So in our study we included all suicide victims from a small region called Škofja Loka in Slovenia, in a given time span, and assigned each suicide victim a control, in terms of age and gender. The two groups were then compared for the date and complaint of the last appointment with their physician. By studying information which we obtained from their personal medical records, what we found regarding the date of the last appointment is that 39% of the suicide victims visited their primary care physician in the month prior to suicide as opposed to only 21% of the control. When observing only the last week we found that 18% of suicide victims visited the primary physician as compared to only 4% of the control. When comparing the reasons for the visit, the difference between the groups was very obvious: 30% of suicide victims sought help for mental health problems, while this was the case in only 3% of the control. So to make a long story short, suicide victims visited the primary care physicians more and more often due to mental health complaints.

Hamish Holewa: Quite a remarkable difference. Considering your findings relating to the frequency of contact, does your research indicate that there is a misdiagnosis of suicide ideation or ineffective treatment or a combination of both?

Saska Roskar: That’s a rather difficult question. We definitely can build on the conclusion that suicide victims more frequently come to see their primary care physician in the weeks before suicide and that the main reason for an appointment was mental health complaint. In those cases the primary care physician could recognise potential suicide risk but as previously reported by other studies, the core problem seems to be the fact that primary care physicians are not doing too well in the detection of depression and other mental behaviours related to physical behaviour, but on the other hand it has been reported that only 40% of suicide cases the primary care physician was aware that the patient had made a suicide attempt in the past, and if a suicide risk was recognised, this was positively related to the presence of a psychiatric diagnosis and negatively with the diagnosis of physical illness. Now why I am saying this is because special attention in the primary care setting needs to be directed towards patients with health complaints that are known to elevate suicide risk, such as for example alcohol dependency syndrome, chronic somatic disease, and so on. And this again brings us back to our results, namely a patient who keeps returning back to the G.P. deserves more attention. Perhaps we did not recognise the problems which lead to the depression, and we treat him for back pain which despite the medication he keeps complaining about, and returning back to the G.P. And depression may often hide behind physical complaints and what is not recognised, cannot be properly treated, and what is not treated can get worse.

Hamish Holewa: Absolutely. On the topic of depression, your article proposes several methods for increasing the depression diagnosis. One method mentioned is education and recognition of suicide. Do you just want to talk about what that program would involve?

Saska Roskar: As previously said, suicide and other forms of suicidal behaviour often face people with mental illness which is mostly depression. And now firstly, the fact is that depression often goes unrecognised and untreated in primary care settings and secondly, the fact that most persons who engage in suicidal behaviour have had contact with the primary care physician prior to death suggests exactly that education of primary care physician on depression recognition could contribute to suicide prevention. Now what such educational program should include is firstly, theoretical information about depression and suicide, such as signs of depression, risk groups for depression and suicidal behaviour, and then of course also practical guidelines about how to treat depression, how to ensure compliance of the patient and so on. It also necessary for the program to include a section about how to ask a patient about suicidal ideas or intention, because many people also professionals are mainly reluctant to ask about suicidal ideation because they believe this question can trigger suicide ideas, and the first study of this kind, namely about education of G.P.’s on depression was conducted back in 1983 on the Swedish Island of Gotland where education of General Practitioners on depression increased the prescription of antidepressants and lead to a decrease in suicide rates among women and what is even more important this model of the study was successfully replicated many times also in Slovenia.

Hamish Holewa: But you also note that education programs need to extend beyond the primary health care practitioners and the use of multifaceted interventions such as tele-health, as well. Do you just want to further elaborate on those additional programs?

Saska Roskar: Yes, well there is no doubt that primary care physicians are important gatekeepers when it comes to prevention of suicidality, multi-faceted interventions that upgrade common treatment in primary care like telephone care management with structured cognitive-behavioural psychotherapy, enable firstly better follow up of the patient, ensured better compliance of the patient, and last but not least, they seem feasible and they fit well in the busy primary care setting.

Hamish Holewa: And do you have any future research planned for this topic?

Saska Roskar: It sure would be very valuable to follow up this issue more closely, and perhaps even combine this data with some other form of research approach. For example, psychological autopsy, or something like that to get a more in depth insight into the data of what exactly has been going on, with a specific suicidal person.

Hamish Holewa: Yes, absolutely. Thank you for speaking today with IPP-SHR podcasts.

Saska Roskar: Thank you very much for inviting me.

Podcast Keywords

suicide, primary care intervention, mental health, depression

'Medical Care and Quality of LIfe': Spiritual Care for Patients with Advance Cancer

2011-06-13T19:00:00.000-07:00

Interviewee

Dr Tracy Balboni, Instructor in Radiation Oncology, Harvard Medical School, in the Center for Psycho-Oncology and Palliative Care Research, Dana-Farber Cancer Institute, Boston, USA

Article

Balboni, T.A., Paulk, M.A., Balboni, M.J., Phelps, A.C., Loggers, E.T., Wright, A.A., Block, S.D., Lewis, E.F., Peteet, J.R., Prigerson, H.G. (2009) Provision of Spiritual Care to Patients With Advanced Cancer: Associations With Medical Care and Quality of Life Near Death Journal of Clinical Oncology, vol. 28 (3):445-452

Summary

Spiritual care is seldom part of end of life care for patients in the United States, despite the fact that it has been incorporated into American palliative care guidelines. This week, Michael Bouwman talks with Dr Tracy Balboni, who says the reason for this is a lack of education and training. She has found that even practitioners who are aware of the spiritual components of illness, and wish to provide spiritual care, find it difficult to sensitively acknowledge the spiritual needs of their patients. Dr Balboni says that as well as understanding the importance of spiritual factors, practitioners need to be trained in taking spiritual histories, assessing for spiritual needs and working as part of a multi-disciplinary team that meets these needs. Dr Balboni stresses that spiritual care has been shown to improve quality of life for dying patients, and can be particularly helpful for patients who are unable to find acceptance and peace at the end of life, or believe that their religion requires them to continue to opt for aggressive treatments.

Transcript

Michael Bouwman: I’m Michael Bouwman and today I’m introducing Dr. Tracy Balboni, Assistant Professor of Radiation Oncology, Harvard Medical School in the Centre for Psycho-oncology and Palliative Care Research, Dana-Farber Cancer Institute, Boston USA. I’m speaking with Tracy about her study and article, “Provision of Spiritual Care to Patients with Advanced Cancer: Associations with Medical Care and Quality of Life near Death”, published in the Journal of Clinical Oncology and co-authored with others listed on our website. Welcome, now as mentioned in your article, despite spiritual care being incorporated into American national care guidelines, it remained notably absent for most patients at the end of life. Could you provide a brief overview of spiritual care and the reasons for its absence in end of life care?

Tracy Balboni: Sure, spiritual care can be defined as medical care that acknowledges and respects the spiritual components of illness that are present for many patients, not all but for many patients particularly in the setting of life threatening illness as well as attention to any spiritual needs that frequently arise in the illness experience. Regarding why spiritual care is infrequent despite national guidelines at least within the United States, I think there’s a variety of data regarding this question. I think probably the most important factor is that there is insufficient training of practitioners and insufficient training meaning insufficient training that leads to awareness of these factors as well as insufficient training in practically taking spiritual histories, assessing for spiritual needs and attempting to be a part of a multi-disciplinary team that meets patients’ spiritual needs. For someone that isn’t trained, even if they are someone [who] are aware of the spiritual components of illness, knowing how to sensitively and in a patient-centred fashion acknowledge the spiritual components of illness is something that’s not easy to do

Michael Bouwman: And your study shows a link between spiritual support and an increased likeliness to receive hospice care at the end of life

Tracy Balboni: Some hypotheses include that perhaps by acknowledging and addressing spiritual needs or facilitating patients reaching a place of peace and transition and hence helping them transition to acceptance of their illness and to comfort-focused care such as hospice and spiritual care, may again be helping patients to deal with their spiritual needs and find that spiritual peace that clearly I think is an important part to acceptance of one’s illness and feeling like one has reached completion in a process of dying at end of life

Michael Bouwman: And being able to move onto hospice care

Tracy Balboni: Exactly. Another potential hypothesis includes the possibility that by the medical team understanding and incorporating patients’ spiritual beliefs into medical care discussions, you know such as things like end of life discussions, the medical team might be helping patients to recognise less aggressive treatment options that are consistent with their religious or spiritual beliefs. So for example, a patient might believe that their religious community requires them to do everything that they can in order to continue living and that might include choosing to continue to allow themselves to receive CPR and to be intubated and go to ICU’s etcetera, but perhaps by interacting with patients on that issue I think one can help patients to understand that that’s the limitations of medical technologies. You know often times it’s not life prolonging and perhaps to find less aggressive options that remain consistent with their own religious beliefs

Michael Bouwman: Yes and reframe the decision making process in a way that’s consistent with those beliefs

Tracy Balboni: Exactly

Michael Bouwman: And you also noted that greater spiritual support at the end of life was associated with a better quality of life near death. Was that potentially related to patients receiving hospice are?

Tracy Balboni: That’s a very good question, it’s something we attempted to address in the analysis controlling for whether or not they received hospice care. So that was sort of done in the way the actual statistical analysis was performed but even when you look at who for example within the group of who receives hospice, you still see that relationship. So you know doing a variety of different ways of trying to control for that peace, we still see this impact and there’s been other studies that have shown that hospice in and of itself contributes to improved patient quality of life, particularly when they receive hospice for a longer period of time at the end of life, something more than a week’s period of time there appears to be an independent, additional effect that is brought about by spiritual care

Michael Bouwman: And you note that patients with high religious coping have a fivefold decrease in odds of receiving aggressive care at the end of life compared with those not supported. Could you explain for our listeners, the term high religious coping and the factors that may be attributed to the consequent decrease in aggressive care at the end of life?

Tracy Balboni: Well religious coping itself is a term that’s for patients’ behaviour when they’re using their religious or spiritual beliefs to cope with the stress of their illness. So for example, you know a common one is just as a result of one’s illness, seeking a closer connection with God and that closer connection with God or their faith or higher power etcetera is actually helping them in the coping process. There’s actually a scale that’s been developed by Kenneth Pargament specifically measuring - well there’s actually two types of religious coping; positive religious coping, negative religious coping. I’m just going to focus on positive religious coping which is what we focused on here, which is basically a seven item questionnaire that examines questions like that. interestingly, in this same study population we found that high religious coping patients have a greater risk of aggressive care at the end of life than patients that don’t score high on that scale, including receiving more ICU care and having a greater likelihood of ultimately dying in an intensive care unit setting. What’s causing that, I mean we sort of alluded to some of this before, you know perhaps there’s things such as belief in miracles or feeling that one’s religious beliefs require them to do all things possible as I mentioned earlier. Again it may be that spiritual care particularly in this population had a big effect so it was actually protective in this high risk group for receiving aggressive care. Spiritual care is helping to protect these individuals from receiving that aggressive care and one can imagine that it’s because you are addressing, you know helping patients to perhaps understand, it doesn’t have to necessarily only be in the ICU setting that miracles can happen right? Miracles can happen in a variety of settings (laughs), you know I mean things, obviously all patient-centred and specific to one’s particular set of beliefs in the particular context might be helping people to again as you mentioned, would sort of, reframing their illness as it relates to their own religious beliefs. You know an additional possibility is that high religious coping patients have more spiritual needs, you know these are patients with a heavy burden of spiritual needs, things that are impeding them from finding that spiritual peace at the end of life and so hence spiritual care is actually helping them in that sense in reaching spiritual peace and therefore protecting them from that greater aggressive care. Again there needs to be more research to really begin to tease out what are the actual mechanisms of why we’re seeing these relationships

Michael Bouwman: And lastly Tracy what would you say are the practical implications from this study?

Tracy Balboni: The number one practical implication is the need for greater awareness as I mentioned before, the probably number one limitation at least within the US is a lack of training that leads to the awareness of the importance of these factors and the lack of training that is necessary to make the acknowledgement of the spiritual components of illness, particularly advanced illness, just a common and everyday part of taking care of those patients. Clearly it’s now part of national palliative care guidelines at least within this country, certainly the you know, even this part of the world health organisation definition of palliative care, spiritual care is considered to be one of the key components of that within the US and you know, clearly other countries as well but for that to really change the culture of the practice of medicine in the setting of caring for people who are facing advanced illness and who are dying, it really is going to require better education and better training of those individuals to really be able to see a difference and perhaps even to, as we noticed in the study, be helping patients to transition to not only have a better quality of life when they die but also to avoid aggressive care that we know in and of itself has its own negative implications, not only for patients but then ultimately their families as well

Micahel Bouwman: And quality of life for everyone concerned

Tracy Balboni: Yeah exactly, exactly

Michael Bouwman: Well Tracy thank you very much for talking on this important area which needs a lot more research I think

Tracy Balboni: It certainly does

Podcast Keywords

spiritual care, advanced cancer, quality of life

Research Notes: 'A Fine Line': Mental Health Support Workers Strive to Define their Role

2011-06-13T18:59:00.000-07:00

Interviewee

Barnaby Pace, Senior Academic Staff Member, Waikato Institute of Technology, Thames Campus, New Zealand

Article

Pace, B. (2010) Healthcare Professionals and Service User's Perception of Mental Health Support Workers, International Journal of Psychosocial Rehabilitation, 14(2). 57-66

Summary

Barnaby Pace talks about the use of focus groups and semi-structured interviews, to study the perceptions healthcare professionals and service users in New Zealand have about mental health support workers. He stresses the importance of ensuring that the Maori population was adequately represented in the study. He also emphasises the ethical importance of ensuring that mental health consumers felt comfortable during the interview process. He explains how using a previous mental health service user to conduct the interviews, rather than conducting the interviews himself, and cross-checking to see whether the themes emerging from his analysis aligned with participants' perceptions, were invaluable research tools for his study.

Transcript

Hamish Holewa: Hi and welcome to Research Notes. Research Notes is a complementary podcast which explores the practicalities, issues and methodologies associated with conducting psycho-social health research. For podcast one-hundred and thirteen, I talked to Barnaby Pace, Senior Academic Staff Member, at the Waikato Institute of Technology, about his article titled: Healthcare Professionals and Service User's Perception of Mental Health Support Workers. Barnaby, for your study you used a qualitative methodology, with data gathering activities, using focus groups and semi-structured interviews. Why did you use focus groups for health professionals, and semi-structured interviews for mental health users?

Barnaby Pace: The key reasons for doing the two different approaches within the one research was that I felt that by doing the one on one structure interviews with the service users would make them feel, I guess, more comfortable and feel favoured to open up and express how they felt about the research which I was undertaking and feel more comfortable in answering the questions. Whereas, with the health care professionals, used to that kind of group work, used to discussing their work, also, I guess, kind of, restricted by time and it was easier to get a group of them to do it at once, one of a series of interview with them, so fundamentally the questions were very similar just one or two points different and make each group feel as comfortable as they possibly could.

Hamish Holewa: Yes, excellent. And, additionally for the interviews conducted with service users, you used a previous service user who was trained in interviewing techniques. Why did you use that service provider and how did you conduct such interviews?

Barnaby Pace: Initially, I called on a service user I knew had had training in research methodology, primarily again, because I wanted to make the service users feel as comfortable as they possibly could be, as if they were talking to a peer or someone that had, kind of, lived through some of the similar experiences, or had similar experiences to themselves, so that they felt safer and it was easier to prove that initial rapport than it would have been had I conducted the interviews myself.

Hamish Holewa: Yes, absolutely. And were the majority if the interviews conducted face to face, or over a phone, or a mixture of both?

Barnaby Pace: All of the interviews were conducted in face to face manner.

Hamish Holewa: And, in your research you used participant cross checking in the form of validation groups. Do you want to just explain the purpose behind that and the techniques used?

Barnaby Pace: Certainly, I had two groups: one for the health care professionals and one for the service users. The idea here was that once they’d gone through, I guess, kind of the rich narratives which I had from the interviews, from the transcripts, and I’d gone through, and kind of, sifted out those main themes, I just wanted to check back in with those groups to make sure that the themes which I’d identified they saw as well, so it wasn’t just my perspective of it. The problem was conducting the qualitative methodology, so much of it ended up revolving around the researchers themselves which the researcher has to limit this influence. So, in order to make sure that the themes I was pulling out from the research was a line with what they were saying. It kind of checking back in with both groups to make sure that had I’d identified the correct themes, or was I completely off the mark.

Hamish Holewa: Right. Yeah, absolutely. And, mental health service users can be classified as a vulnerable group. What are the ethical implications of conducting research with such a group?

Barnaby Pace: They are a very vulnerable group, and we had to be, kind of, I guess very careful around the potential ethical implications for this particular group. So, within this research, a lot of it revolved around making sure that they felt safe, that they felt comfortable, that the people who were involved in the research had that mental stability, that they were in a, I guess, a good mental space to actually be involved in the research, and that there was nothing involved in the research that was actually going to, I guess, disrupt that and make them more unwell than they actually were. Of course, the kinds of studies that’s conducted in New Zealand I had to also adhere to the principles of the Treaty of Waitangi, which is an important document in New Zealand, and make sure that I included a Maori population within my sample, I guess that’s another ethical implication, particular to New Zealand, just to make sure that we’ve got a good representation of the population New Zealand has.

Hamish Holewa: Right.

Barnaby Pace: And in New Zealand, more so important because the Maori population is so over represented within the healthcare system. So, just making sure that we’d included them within the sample got a good representation of the population.

Hamish Holewa: Right.

Barnaby Pace: If I was conducting research with the Maori population it may be that we open up with a karakia, or a prayer, to have a Wyter or a song and close the same way, just to make sure that we’re not going to do anything that’s going to offend them culturally.

Hamish Holewa: A notion of cultural safety.

Barnaby Pace: Yes, absolutely.

Hamish Holewa: Well, thank you for sharing that insight with us today on Research Notes, it’s been a pleasure.

Barnaby Pace: Thank you very much. Good talking to you.

'A Fine Line': Mental Health Support Workers Strive to Define their Role

2011-06-13T18:57:00.000-07:00

Interviewee

Barnaby Pace, Senior Academic Staff Member, Waikato Institute of Technology, Thames Campus, New Zealand

Article

Pace, B. (2010) Healthcare Professionals and Service User's Perception of Mental Health Support Workers, International Journal of Psychosocial Rehabilitation, 14(2). 57-66

Summary

Mental health support workers are the second largest group of health care workers in New Zealand, after nurses, however their role is not clearly defined. This week, Hamish Holewa speaks with researcher, Barnaby Pace, who says the fact that support workers are moving towards becoming a registered body in New Zealand under the Health Practice Nurse Competency Insurance Act, means they need to become very clear about their role and function. His research shows that mental health service users see their support workers as providing an important advocacy function, while mental health professionals do not identify advocacy as part of the role. He has also found mixed views from health professionals over whether or not support workers need education and training in order to understand treatment plans, medication and diagnoses. Barnaby Pace warns that because they are unclear about their role, support workers are taking on more of a caregiver role. He says this goes against the 'strength' model, which recommends 'doing alongside' rather than 'doing for' mental health service users, so that their own skills are built upon, and they will be better prepared to function in an integrated community.

Transcript

Hamish Holewa: Hi and welcome to IPP-SHR Podcasts, I’m Hamish Holewa and for today’s podcast I’m speaking with Barnaby Pace, Senior Academic Staff Member, Waikato Institute of Technology, Thames Campus, New Zealand. I am speaking with Barnaby today about his study and article titled: Healthcare Professionals and Service User's Perception of Mental Health Support Workers, published in The International Journal of Psychosocial Rehabilitation and co-authored with others listed on our website. Hi Barnaby, thanks for speaking with us today.

Barnaby Pace: Hi there, good to talk to you.

Hamish Holewa: Congratulations on undertaking work which explores the perspective of, both, the consumer and the actual health professional. Do you want to start this podcast by providing our listeners with an overview of the function and role played by mental health support workers within the New Zealand health care system?

Barnaby Pace: Sure. The mental health support worker role in New Zealand is kind of a non-clinical role. The main purpose of the role, as far as we’ve got it so far I guess, is to support the professional—so the professionals set up, I guess, treatment interventions for the service users and then the support workers help the service users with those treatments and features on a day to day basis. At the moment, and kind of where I guess this research was heading was that the role isn’t really clearly defined, and as support workers make up the second largest group of health care workers in New Zealand, second only to nurses, we kind of really need a clear idea of what that role is.

Hamish Holewa: Is the mental health support worker unique to New Zealand?

Barnaby Pace: Well, they pop up in other areas around the world, but the name changes, so we have community support workers; we have residential assistance; we have psychiatric assistance.

Hamish Holewa: Right.

Barnaby Pace: In some places they are actually called care givers, but, I guess the role is very similar but the name changes.

Hamish Holewa: Right, and in your article you noted that there were some differences between the role definition of support workers, as articulated from the service users and the health professionals. What were those differences?

Barnaby Pace: I guess this is a follow on research; earlier research I’d done where I’d explored the support workers themselves—how they viewed their roles, I kind of wanted to move on from that. Looking at this particular question, the main difference between the two groups, a lot of it was around the wording used, naturally the health care professionals had the idea that the more academic or clinical language associated with it than the service users; probably the biggest difference between the two groups was firstly, the role around advocacy, which the service users saw as a key function of mental health support work, and then the other key difference, I guess, was around the skills requirements, which wasn’t mentioned at all by the service users, but did come up with the health care professionals, which in itself there was a bit of a mixed difference as well; some deemed the group to require more skills or more training, where as another group said, well why did they need it for the role that they actually did. I guess that those are two key difference, other than that, all of the other responses were parallel looking at the care giver role which both groups deemed support workers to have, which is interesting, because that’s not how support workers perceive themselves, so it had a more clinical or academic feel to it from the mental health professionals, as would be expected, compared to, I guess, more lay language used by the service users, again that’s what be expected. I guess, the biggest difference between the two was the idea of advocacy which came up within the services users where they deemed it to be quite an important role, whereas it didn’t come up, or the mental health professionals didn’t identify that as a required skill or a function of that particular role, and then the other one was around skill requirements, or training and education, which the service users’ common identifier, I guess it didn’t come up within the discussion, but it did come up with the mental health professionals and that particular group, I guess, was split in their thinking around that there was one group thought that yes, this group needed education, they needed that up skilling, they needed training, whereas the other group didn’t see why someone that was just in that caretaker role would actually require up skilling or educating.

Hamish Holewa: Yes, yes, absolutely. And that moves us on to the next question where your article actually presents contrasting views from the health professionals regarding the role performed by mental health support workers, and as you said, in regards to care-giving and the level of skill/competence required. Do you just want to further elaborate on those points?

Barnaby Pace: A lot of it I think came back to how people actually perceived the support worker role and how it’s not fully understood as to what a support worker does.

Hamish Holewa: Right.

Barnaby Pace: Part of that is the health care professionals just saw them as someone only...this person who’s going to do the day to day care giving along the lines of helping them clean their flat, etcetera, etcetera, and so they didn’t actually see that more education or up skilling was required to do those tasks.

Hamish Holewa: Right, real practical activities.

Barnaby Pace: Yeah. And the flip side of that is that we had this group of health car professionals that saw that this is a group of people, that are working with potentially highly vulnerable group within the service users, that need the extra education, training etcetera, etcetera, so they understood treatment plans, medication, diagnosis even. I think there was a real contrast there which was interesting, but I think a lot of it comes back to how the professionals were actually perceiving that support worker role and how unclear it is at the moment.

Hamish Holewa: Yes, and in your article you also mention particular concern relating to the domestic duties—as you just described there—employed by support workers as potentially undermining recovery principles and strength based focuses. Could you want to just elaborate on that concern?

Barnaby Pace: I guess the concern here is that we have a group of support workers that themselves are unclear of the role and are taking on more of the caregiver role, then they are acting more in a opportunistic manner and that goes against, I guess, the strength model which focuses on the individual’s strength and up skilling them. So, it’s kind of along the lines of, I guess, doing for the service user, rather than doing alongside the service user, which is how it should be. We run the risk of mothering it, a word that springs to mind, and not necessarily teaching them the skills they need for when they actually go out in a fully integrated community.

Hamish Holewa: Yes, it’s quite a fine line there.

Barnaby Pace: Very fine line, yes.

Hamish Holewa: And, what are the other practical applications for your research?

Barnaby Pace: The overarching outcome here is it reinforces that idea that the role and function of support workers in New Zealand isn’t clear, based on this research and previous research, I’ve now got three different views of what support work is supposed to be in New Zealand, and as support workers are moving towards becoming a registered body in New Zealand, so they come under the Health Practice Nurse Competency Insurance Act, and have that credibility to it, then they need to be really clear on what their role and function is. So, hopefully this piece of research will add previous research, so that we can get a really clear idea of what it actually is that support workers are supposed to be doing within the health care system.

Hamish Holewa: Oh right, well thank you for sharing those insights with us today on IPP-SHR Podcasts.

Research Notes: Cancer Survivors: Finding Meaning and Compassion in the Midst of Uncertainty

2011-06-13T18:54:00.000-07:00

Interviewee

Dr Jan Pascal, Senior Lecturer, La Trobe Rural Health School, Faculty of Health Science, La Trobe University, Victoria, Australia

Article

Pascal, J., Endacott, R. (2010) Ethical and existential challenges associated with a cancer diagnosis, Journal of Medical Ethics, 36(5):279-83

Summary

This week, Dr Jan Pascal talks with Michael Bouwman about why she was attracted to Heideggerian phenomenology as the methodology of choice for her study into cancer survivorship. She says the Heideggerian philosophy around becoming aware of one's death, and the possibilities for life, gave the study a valuable framework, and explains that because the approach embraced subjectivity, it allowed her to be reflexive and think about her own perspective, co-creating knowledge with participants. It also meant that participants themselves were the authority on whether or not they were defined as a survivor. Jan describes her experiences conducting two interviews, six months apart. As well as resulting in participants feeling more relaxed during the second interview, and freer to talk more philosophically, this approach allowed her to detect a significant trend, gave participants a chance to reflect on, and clarify, points from their initial interview, and enabled her to use her preliminary analysis to inform the second round of interview questions.

Transcript

Michael Bouwman: I’m Michael Bouwman and in Podcast number one-hundred and twelve I interviewed Dr Jan Pascal, a Senior Lecturer at the La Trobe University, Australia about her study and article: Ethical and existential challenges associated with a cancer diagnosis. Published in the Journal of Medical Ethics and co-authored with others listed on our website. I began this research note by asking her how she went about defining the term ‘survivorship’. So, you expressly asked the participants...

Jan Pascal: ...did they think they were a survivor? Oh yes, yeah, and they did. They all did, every single one of them, which I thought was an interesting way of looking at it, and it actually challenged my way of looking at it, because even though I said to you I didn’t actually stick to a definition, my own personal definition was more like what the academic literature was saying, which was if you had a reasonable chance of survival after treatment and a good medical prognosis; but when I started my recruitment, I was reluctant to say to people, well, actually you’re not a survivor, go away. I mean, maybe the criteria in my study needed to be a bit more flexible to encompass the experience, and being a qualitative study, I thought I could do that. Being participant driven in that way, I think enriched the study. That’s from my perspective.

Michael Bouwman: Okay. You note the value of Heideggerian phenomenology, for uncovering aspects of the patient experience, and suggest that it is a useful method for this type of research. Could you explain this further?

Jan Pascal: I think, for me, I sort of stumbled upon it. In my undergraduate training I’d never come across the work of Heidegger, so I accidently found it in all the reading that you do when you’re doing a larger study; but why I took to it, instinctively almost, was because I really wanted to capture the participants point of view, as I just said in the previous question. Phenomenology really does focus on the lived experience—on the participant’s lived experience, and it also is very interested in subjectivity and interpretations of experience, once again from the person’s point of view with the experience. So, I thought, oh that’s nice, I didn’t want to measure things, I wanted to hear, you know, the subjective experience. But, interestingly, the Heideggerian phenomenology, unlike other brands of phenomenology, is into subjectivity, so it actually encourages the researcher to be part of the study and to be reflexive and to think about one’s own perspective and point of view, where one sits in relation to, say my own values about survivorhood and life and death, and so forth. Not that it’s about me, but it actually acknowledges the role of the researcher. So, it doesn’t do that bracketing thing that other sorts of phenomenology might do. So, I liked it because it seemed inter-subjective and a bit more mutual, I guess, co-creating the knowledge with the participants. But, that’s from a research point of view, from a, sort of, understanding the phenomena point of view, Heideggerian phenomenology really focuses on being in time—so, looking at the person’s identity, reflecting back on the past and how they are in the present, and how they imagine their future; and I thought, intuitively, before I’d interviewed anybody, that surely, a diagnosis of cancer influences how one looks at one’s past, present and future, and disrupts that sense of a continuous self in time, and I liked the notion of being in the world, as a social worker particularly, you know, we like this holistic and psycho-social approach, and here was a really lovely theory that captured that, and by being in the world, Heidegger means, you know, how your body experiences whatever phenomena it is—in this case cancer and survivorhood—you’re emotional world, the spaces around you, the physical world and your relationship. Also, phenomenology looks at being for death—so it has a strong philosophy around becoming aware of one’s death and the possibilities for life, as well. I mean, the method actually gave the study a bit of design, as in the point, the participants and inter-subjectivity, and so forth, but it also gave the study a framework for understanding the meaning of that lived experience; doesn’t sound too vague and philosophical but...but it directed my methodology, but also my data analysis to capture that meaning.

Michael Bouwman: In your methodology you interviewed participants twice, over a six month period. So, what was your motivation for doing that? And, did the interview focus change between each iterance?

Jan Pascal: Yes, okay. Well, my motivation, firstly, was to capture more than a mere snapshot of the experience. I wanted to gain an understanding of the survivorhood experience as it unfolded. Now, I mean, six months is not long enough because, as we know, survivorhood can be twenty years, I didn’t have time for a longitudinal study, so I thought, six months will give me a sense of that, what they’re going through, and in fact, that’s where the concept iatrogenic uncertainty, that we spoke about in the previous interview, came through, because sometimes—unbeknownst to me—I would turn up for an interview and the person was about to have a test in two days time, or a medical test in two days time, or had just been through one, and if you interview enough people over six months you’re bound to get several, at least, of them about to be tested or just been tested; so that’s where that concept came from. It was an interesting way of seeing people over a period of time and capturing that experience that happened. It also...between the first round of interviews and the second round of interviews, I wanted to give the participants time to reflect on what they told me and to clarify, if they needed to, in the second interview, something out of the first, or to revise something, if they wanted to. It also gave them time to read their transcripts and clarify with me anything they wanted to add or omit or whatever.

Michael Bouwman: Okay, you provided them with the transcripts soon after the original interviews?

Jan Pascal: Yeah, if they wanted to, yeah, I certainly did. So, from the participants point of view I wanted to, sort of, capture that richness and give them an opportunity, but also from my perspective as a researcher, it allowed me to do that preliminary analysis after the first round, so I interviewed participant one to fifteen, I think it was, and then stopped and I was doing continual data analysis throughout all of that, as well. So, that then allowed me to use the preliminary analysis from the data Set One, to theoretically inform the next round of questions for Set Two of interviews. So, that sort of partly answering the iterative nature, but also within Set One, for example, I’d interviewed participants one and two and I’d think, oh well that’s really interesting, I’ll follow that up with participant three and four. Each interview did subtly build on the previous themes that were coming out, so yes, I certainly didn’t ask every single question to every single participant, in the same way, because I wanted to have that inductive process where I could stay focused on the participant’s experiences and yeah, build on or address any gaps with subsequent interviews. And yes, the two interviews definitely wanted to have a bit of a more nuanced understanding, rather than just a snapshot of just a one off experience.

Michael Bouwman: And, do you think the participants articulated more on their experiences in the second round of interviews, having been interviewed once before by you?

Jan Pascal: well, they were certainly more comfortable, because I think all of us get nervous when the record button’s hit, including the participants. So, I think after the first interview I pretty much got the more chronological story in the first interview, you know, I got diagnosed and this is what happened and this is where I went and this is how I felt, and they warmed up as the first interview went on because they were something like an hour and a half long; and by the second interview I was often greeted with cups of tea and scones and all sorts of things, and settled down into a bit more of a philosophical conversation I suppose, because a) they felt more comfortable and probably, you know, they’d had that time to reflect and revise and clarify, and think about what had happened the first time around. So, I think I did get a richer story.

Michael Bouwman: Wonderful.

Jan Pascal: If I think about it, I wouldn’t have liked to have missed out on that whole second round, because they were important. They weren’t necessarily as long, interestingly enough, because I didn’t get the story, I got more just the feelings and the attitudes and what they’d done differently.

Michael Bouwman: Thank you very much for speaking with IPP-SHR Podcasts, it’s been a pleasure talking to you Jan.

Jan Pascal: Thank you very much.

Cancer Survivors: Finding Meaning and Compassion in the Midst of Uncertainty

2011-06-13T18:52:00.000-07:00

Interviewee

Dr Jan Pascal, Senior Lecturer, La Trobe Rural Health School, Faculty of Health Science, La Trobe University, Victoria, Australia

Article

Pascal, J., Endacott, R. (2010) Ethical and existential challenges associated with a cancer diagnosis, Journal of Medical Ethics, 36(5):279-83

Summary

This week, Michael Bouwman talks with Dr Jan Pascal about her research into the psycho-social issues facing cancer survivors and the implications for health care workers. Jan says it is important for health care practitioners to understand that surviving cancer is a cyclical process involving, both, positive phases and phases of distress, rather than a linear process that ends with a sense of 'closure'. She stresses that while many cancer survivors find their lives are enriched by living more meaningfully and increasing their compassion and generosity to self and others, they are still vulnerable to existential anxiety, or fear of death. Jan believes it is important for health care workers to understand that survivors can experience profound distress in the lead up to routine long-term testing, as each test functions as a reminder that the cancer may come back. She recommends that ongoing psycho-social support be offered to all cancer survivors, regardless of whether a mental health condition has been diagnosed, and cautions health care practitioners to be mindful of survivors' fear of death when forming cancer support groups with people at varying stages of the disease, as these groups can increase anxiety for the survivor.

Transcript

Michael Bouwman: I’m Michael Bouwman and today I’m introducing Dr Jan Pascal, Senior Lecturer, in the La Trobe Rural Health School, Faculty of Health Science, La Trobe University, Bendigo, Victoria, Australia. I am speaking with Jan about her study and article: Ethical and existential challenges associated with a cancer diagnosis. Published in the Journal of Medical Ethics and co-authored with others listed on our website. Cancer survival rates have been steadily rising over the last decade. Can you give our listeners a brief overview of the term ‘survivorship’?

Jan Pascal: The term ‘survivorship’, I guess, is a pretty contested term, both in the literature and also in how the participants in the study actually interpreted that term. Some authors say, you know, anyone that’s had cancer and is still alive is a survivor—sort of a very broad definition. Other writers are a bit more cautious and say, well, you know, five years plus and then perhaps, you know, you’ve got a less chance of occurrence, so that’s a survivor; and another person might say, well, when you’ve been through treatment and you’ve come out the other side of the treatment and you’ve got a reasonable medical prognosis, then that’s a survivor. But I kind of like Brad Zebrack’s definition, which is, ask the people themselves—so that’s what I did: in the actual study that informed this article, the participants who took part in the study were actually exactly that, they were all different kinds of interpretations of survivorhood. So, the participants, for example, some actually had metastatic disease; some of them didn’t actually survivor, but they considered themselves to be surviving that experience. A few other people had been disease free for say ten, fifteen years and then experienced a recurrence, so they thought they’d survived pretty well, thank you very much; and other people were straight out of treatment, so it might have been actually quite difficult to predict whether they were going to survivor or not; and other people have survived for twenty years. So, a really mixed interpretation, which I thought that was quite interesting, in and of itself, because it didn’t necessarily contradict medical prognosis, but it just showed that people viewed themselves objectively a bit differently.

Michael Bouwman: And your article mentions a ‘fear of recurrence’ was a frequently discussed experience and one that lead to considerable existential angst. Could you talk further about that Jan?

Jan Pascal: I think, in the literature and in the study was probably single most common theme that came up. I think there’s barely a survivor I’ve ever met, both in the study or in the community, that doesn’t worry that it’s going to come back. That’s not just being a hypochondriac, I mean, it’s a very real fear, because, you know, survivors never get told, that’s it you’re cured go away. And, at other times, people said to me, my head says, yes I’m okay, and I’ve had the medical tests done and everything, but actually, my heart says, what of it comes back, and so a headache can become a brain tumour, and I think survivors are smart enough to know when it’s just worry and when it could actually be something to be investigated; and that, sort of, precipitates this concept of existential angst, which is the fear of death, put simply, it really is a fear of your non-existence.

Michael Bouwman: Right.

Jan Pascal: But, on a more, sort of, positive note, that also gives people a bit of motivation to think, well, heck, I’ve got this second chance what do I do with that.

Michael Bouwman: And, you note that ongoing diagnostic procedures and routine testing have the ability to underscore the survivorship status, and this has been termed as ‘iatrogenic uncertainty’.

Jan Pascal: Sure, well, kind of a complicated way of saying that the medical system and the protocols and the follow up testing creates uncertainty; so the iatrogenic part is created by the medical system; not deliberately, of course, but the situation that survivors are in, they’ve got this constant reminder that they are only a survivor, you know what I mean. So, the tests that are meant to reassure people, that you know, okay, it’s not really anything to worry about, actually cause a lot of stress and distress, you know, like as one person said, you can go either way, one minute you think you’re fine, you go and get a blood test and it’s some disastrous result; and I just sometimes wonder with health care workers, when they’re in the hospital, for example, and they’re the radiographer, or the radiologist and they’re administering routine everyday tests, that for the cancer survivor marching in there for their anniversary or six month check up, it’s actually a pretty big deal, and what the participants told me is in the weeks and days, leading up to the checkups and the follow ups, that some of them would feel outright distress—like, sort of, tearful and upset, or quite and withdrawn, or however they do distress, and some people didn’t really quite know what was wrong—they’d feel grumpy and out of sorts and out of kilter, they couldn’t put their finger on it, and then after the big day had been and gone, they’d go, oh, I’m now exhausted with all that build up. So, it is a rally important experience, I think, for survivors.

Michael Bouwman: Yes, and you mention in your study a key goal for survivors was to ‘lead a good life’, one that involves exploring moral dimensions and transcending the norms of socio-cultural relationships and expectations. Did all the participants mention this process as part of survivorship and how did health professionals respond to these findings?

Jan Pascal: Once you’ve had a diagnosis of cancer and been through all that treatment and everything, a lot of the everyday things that once seemed really important—like you know, arguing with the boss, for example, or being cranky with the kids or the dog—all those things seem ridiculously petty; they kind of went through this process of rethinking the boundaries about how they looked after themselves, and a lot of them became much more conscious of being more healthy and their relationships with others. One woman talked about being a very, sort of, attentive mother and grandmother and she was thinking, well maybe I could just a little bit kinder to me as a result. They all talked about increased compassion in wanting to be a good person, and the experience of their own suffering, I think, sort of, drew them closer to others and other causes, and that led to this wanting to make a contribution and, I guess, all of that revisioning of one’s life and the meaning of one’s life, sort of, assisted to create a new meaning. People became involved in things they wouldn’t normally have done before; people gave up jobs and some people walked away from marriages and all that sort of stuff, but on a positive note, there’s a lot of volunteer activity going on—working in op-shops, and a lot of it was rethinking just the normal everyday life and how to be a bit more generous and a bit more compassionate to others, and a bit more kind to yourself.

Michael Bouwman: And, are there other practical implications from this research for people working with cancer patients and survivors?

Jan Pascal: The most important thing to come out of the study was understanding this experience a bit more deeply, and I don’t know us health care professionals have got our heads around what survivorhood means. So, the first thing would be to understand, I guess, that it’s a holistic experience and it’s pervasive—so it enters all aspects of the survivors life: body, mind, spirit, soul, community if you like, and that it’s long term—people didn’t seem to get over it in five minutes or even in twelve months. So, the survivorhood experience seems to still be as fresh for the twenty-year plus survivor, and that it’s cyclical, it’s not linear and you reach closure, as they say in the popular press. The two most important practical implications though is, I’d really love to see survivors offered psycho-social support, whether or not they had a mental health issue. I think if you have depression or anxiety, either induced by cancer or, you know, co-morbidity, or pre-existing, there’s probably support because it’s a diagnosed mental health condition, but most survivors don’t have diagnostic anxiety or depression, or if they do, it’s not for very long, but everyone has distress, if we could see a treatment protocol similar to the regular checkups that people get, that would be beneficial, and if survivors don’t feel they need it, or they don’t want it at that time, they can refuse it, of course; and the other thing I think is when running support groups, which is one of the few psycho-social supports around, it’s to make sure the support group isn’t necessarily a mixture of people who are surviving, not surviving and in palliative care, ‘cause I think that’s a terribly difficult place for a survivor to be. So, I think understanding and recognising the unique experiences of survivorhood’s really important in a group work context as well. So, I mean, survivors are tremendously generous, they do have this, like I said before, this increased compassion and want to give back to the community, so, I’m not, sort of, suggesting that survivors shouldn’t be in supportive roles, but it’s probably best for health care workers not to assume that because someone’s a survivor they’re instantly comfortable with dying, because, as we were talking about earlier, Michael, you know, the whole thing about fear of recurrence and anxiety and all the rest of it, you don’t want to be increasing that burden to survivors either.

Michael Bouwman: Quite right.

Jan Pascal: Most of them felt that support groups were actually very difficult and were very miserable, someone said, and actually brought them down. I know that sounds a bit negative, and as a worker I used to think support groups were really wonderful, but they’re very complex when you’re dealing with death, I think.

Michael Bouwman: Well, thank you very much for speaking with IPP-SHR Podcasts today, it’s been a pleasure.

Jan Pascal: Well, thank you for asking me.

Podcast Keywords

cancer survivorship, leukaemia, lymphoma, myeloma

Research Notes: 'Last Days': The Changing Location of Death in Canada and what it Means for Policy Makers

2011-06-13T18:49:00.000-07:00

Interviewee

Dr Donna Wilson, Professor and Caritas Nurse Scientist, Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada

Article

Wilson, DM., Truman, CD., Thomas, R., Fainsinger, R., Kovacs-Burns, K., Froggatt, K., Justice, C. (2009) The rapidly changing location of death in Canada, 1994-2004, Social Science and Medicine, 68(10):1752-8

Summary

Dr Donna Wilson describes the techniques and technologies she has used to quantitatively analyse decades of mortality data from Canada. She stresses the importance of safeguarding sensitive information, and she talks about the impact that changes to Canadian privacy legislation has had on her ability to access and analyse data. Donna urges researchers to find out what databases exist in their own countries and to make use of them, due to the straightforward, valuable and comprehensive data they provide, and due to the ease of using this type of data to conduct cross-country comparisons.

Transcript

Hamish Holewa: Hi and welcome to Research Notes. Research Notes is a complimentary podcast which explores practicalities, implications and methodology associated with conducting research. For podcast one-hundred and eleven, I spoke to Dr Donna Wilson, Professor in the Faculty of Nursing, University of Alberta, about her study and article titled: The rapidly changing location of death in Canada, from 1994 - 2004. Hi Donna, thanks for speaking with us today. At first, what did you anticipate would be the major challenges in conducting such a large scale study which explores the actual changing location of death in Canada?

Donna Wilson: Well, the big issue for me was getting data, you know, on every death in Canada, I mean, there’s quarter-million, two-hundred and fifty thousand deaths each year. So, what this was, was finding an existing database and getting access to that database; and it just so happens that a national group called Statistics Canada is given all of that data and warehouses it and will share parts of that database then to researchers, if you ask for it. So, the big challenge then is finding out, you know, who has the population data; can you access; how do you access it, and the good news is that this is very...I have to pay a small fee, but it’s not like when I try to get say one year of hospital data, where I’m paying ten-thousand dollars for one year. And, a lot of it though is when you get the data, you have to safeguard that data so that only certain people can use it; you only have it on certain computers so that people can’t hack in. But, also you need a computer that has the capacity to manage an SPSS program or another program to be able to analysis the data; and, of course, now we’ve got computers that are good enough and programs that are good enough o manage this, but, ten years ago, you know, it would take me an hour just to ask the computer to tell me what percentage of people were passing away in hospital. In some ways, the biggest challenge now is just getting access to data that another group holds and safeguards—that’s probably the biggest challenge today.

Hamish Holewa: And, do you just want to give our listeners a brief overview of the services then and data provided by Statistics Canada as a whole?

Donna Wilson: Hopefully, every country has an organisation like Statistics Canada. It was set up by Government, but it’s actually not a non-Government department, although their legislated by federal law to exist and to collect a wide range of data; their even the ones who do the census in Canada every five years. So, this is a group also though, that doesn’t just, kind of, collect data that the provinces have collected, or that other groups have collected, they do certainly bring them in and clean the data up and combine the data, and parcel it out to people, but they also do a great deal of research as well too, like a Canadian social survey to find out who’s getting home care and who isn’t, and what kinds of home care. They do economic studies; they’re a tremendous group of not just of people who collect data but whom also analysis the data, so they talk about economic trends—rural versus urban trends. They’ve become, sort of, a priceless organisation for Canada, which again, I hope every other country around the world has something like this. Really, the information they provide is clear, non-biased. It’s not from a group who want to, kind of, sway public opinion. This is the facts; they are just going out and getting factual information, and analysing and putting it out for public reaction, government reaction, and also making their data available to researchers like myself.

Hamish Holewa: Yes, it’s a wonderful service. Absolutely, and were there any unexpected challenges associated with obtaining the data, or that arose when you were obtaining the data or analysing the data?

Donna Wilson: Absolutely. I think there’s always a few challenges whenever you do secondary analysis of data. For many years, I’ve been collecting the annual edition of data from Statistics Canada, and then in Canada we became very concerned about privacy of information and protection of privacy, and all of that; and all of a sudden it became very difficult to get this annual data, and I would have to go to every province and say, can I have your data that you give to Statistics Canada. It became much more of a cumbersome, sort of, thing and I guess that explains why, here it is 2010, and I just got 2006 data. So, it has built in quite a lag, because every province has to consider, are we okay with giving this researcher, you know, what could be fairly sensitive data; and, we’ve had one other major wrinkle as well too, which is that one of our provinces has decided that they don’t want to share their data any longer, and unfortunately, when you go to them and say, can we have your data, so we can match it with all the other provinces—and they’re very good, they say, yes here it is—but the problem is that they’ve changed the data and you can’t merge them anymore, they’re not compatible anymore—so, they’ve put together hospitals and nursing homes together as if that’s the same; and this is Quebec. So, anyway...so, unfortunate we just don’t have the quality of data that we had a few years ago. Other than that, it’s like any big data statute—there’s always going to be a little bit of error: you find someone passed away at the age nine-hundred and ninety-nine; you find someone who didn’t write down if they were male or female. So, in any database you have to go through a just do a little bit of checking and make sure, that in fact, you don’t have any kind of these built in errors and you have to make sure there’s not a lot of missing data, as well too. ‘Cause one of the real values of population data is you’ve got information on every single person, so it’s not like a sample where you’re trying to guess if this sample is like the entire population, you have information on the whole population, unless there’s a lot of missing data in there.

Hamish Holewa: Yes, a fantastic resource. And, just looking back on what you’ve learnt from this experience, have you any other advice to researchers that would help them access data from these services, or likewise?

Donna Wilson: Well, one of the things I’d like to encourage everyone to do is to go and find out what data exists—so what databases are out there, because oftentimes they’re totally underused. A great deal of information is routinely collected on hospital patients, on nursing home residents, on...out of death certificates, and that information often tends to be just brought together and kept by the organisation. My biggest piece of advice is to really search around and see what’s available, and get your students to be analysing the data or yourself; and the wonderful thing is, especially with death certificate data, it tends to be very similar from one country to another, so you can compare your use of hospitals in Australia with Canada, for instance, by using death certificate data; or Europe—so you can look at, is our health policy going in the right direction as other countries; and I guess the other thing, of course though, is it can usually take a year or two to access the data, so build in some time and perhaps some funds, and you may have to lobby to have the right to access this data—they may not be used to opening it up to researchers, when they only have the internal people. And, see that you can work with your university or your group to have access to that data; and other than that, it’s just having a, you know, a good computer, and learning SPSS or SAS, or Access or another program, so that you can manage the data; and I guess the last piece of advice, if you have a programmer that also helps: someone who’s very comfortable with managing statistical data, so that they can manipulate the data so it makes it easier for you to analyse it. So programmers are invaluable as well too, because they save you a lot of time. But other than that, this is pretty straight forward data and just incredibly valuable data—death certificate data, all kinds of other population data; very valuable, and quite easy to analyse, really, when it comes down to it, when you say eighty percent of people were dying in hospital, now it’s sixty percent—simple statistics, very clear to people, very useful.

Hamish Holewa: Yes, yes and with a lot of practice implications as well.

Donna Wilson: Definitely.

Hamish Holewa: Just for our Australian listeners there, death certificate data is available off the National Death Index, with the Australian Institute of Health and Welfare. Well, Donna, thank you very much for sharing those insights today in regards to your research process for this important piece of work.

Donna Wilson: Well, I’m delighted to have been able to talk. I’m particularly excited, I think because, I think, you know, death and dying doesn’t get, often, much attention, and when you think with population aging and population growth, in Canada, in twenty years we’re going to having twice as many people passing away each year, and most other developed countries are facing something quite similar to that as well too.

Podcast Keywords

palliative care, end-of-life care, location of death, place of death, hospital, Canada

'Last Days': The Changing Location of Death in Canada and what it Means for Policy Makers

2011-06-13T18:22:00.000-07:00

Interviewee

Dr Donna Wilson, Professor and Caritas Nurse Scientist, Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada

Article

Summary

When Dr Donna Wilson worked as a hospital nurse, she became concerned about the people she saw coming into hospital during the last days of their lives, having treatment that was often futile, painful and offered false hope. She began to study Statistics Canada mortality data, and found that the percentage of people dying in hospital had risen from fifty to eighty per cent from 1950 to 1994. This week, Hamish Holewa, talks with Donna about her most recent study into the changing location of death in Canada, which showed - to the surprise of governments and researchers - that by 2004 the trend had shifted back, so that only sixty per cent of Canadians died in hospital, with the largest shift being out of hospital into the home. Donna believes policy makers must plan policies to support end-of-life care in the home and nursing homes, and incorporate strategies for information provision to family members; supporting workers to take time off work; avoiding abuse; helping nursing home staff to become comfortable with palliative care, and helping family members to recognise the importance of the care they provide, so that they don't have regrets after their loved ones die.

Transcript

Hamish Holewa: Hi, and welcome to IPP-SHR Podcasts, I’m Hamish Holewa and for today’s podcast I’m talking to Dr Donna Wilson, Professor in the Faculty of Nursing, University of Alberta, Canada. I am speaking with Donna today about her article and study titled: The rapidly changing location of death in Canada, 1994–2004. Published in Social Science and Medicine, and co-authored with others listed on our website. Hi Donna, thanks for speaking with us today. Do you want to start today’s podcast by providing a brief overview of what was known, prior to your study, of the place of death patterns in Canada, and really why it is important to actually monitor these trends?

Donna Wilson: Approximately ten years before, I had done a similar study in Canada, and that came about because I was a hospital nurse, and I was concerned about people coming into hospital and having a lot of treatment in hospital that was really futile, painful and it offered false hope; and so as a nurse, I became in interested in where people were spending their last days. So, about ten years ago, I was working with a team on some other research and we found out that you could get Statistics Canada mortality data—beautiful data; population data, and at that time, quite easy to access, and, believe it or not, they gave me data going back to 1950, when information began to be collected off the death certificates and all across Canada; and ten years ago, we found from 1950 up until 1994, that more and more people were going into hospital and passing away in hospital. In 1950, it was about fifty percent, and by 1994, it was about eighty percent. I mean, it was almost unusually for people to be dying in care homes, or aged care home, or nursing homes; and very few people died at home. Hospitals in Canada were being used as hospices, in many ways.

Hamish Holewa: And you findings in your article on the location-of-death indicate, as you said, that there is a decline in the proportion of deaths in hospital. Do you just want to elaborate on your location-of-death findings then, and, in particular, the decline in hospital deaths over this time period?

Donna Wilson: What was really interesting was that the study that came out in Social Science and Medicine, it found completely the opposite in what people were thinking was happening, in that there was this idea that hospitals were still very heavily used by terminally ill and dying people, and when the study pointed out then that the shift had gone from eighty percent down to sixty percent and even fifty percent in some provinces, that really was a great surprise to most governments and researchers; and what was interesting was that the shift was out of hospital and mainly into the home, in their own house, or their, perhaps, daughter’s or someone else’s home—so, quite a phenomenal change, without any grand plan for it.

Hamish Holewa: Hmm, very interesting, and obviously those findings have quite important implications in relation to relation to Canadian hospitals and nursing homes. Do you just want to talk about that a little bit?

Donna Wilson: You know, there’s this great concern about the high cost of health care, and, of course, hospital care is so much more expensive than care in the home or care in the nursing home. I think, in some ways, this allows hospitals to plan a little bit better, that, in fact, they are not having to provide end-of-life care to the majority of Canadians; this frees up hospitals to do what they are more traditionally thought of as doing, which is, you know, diagnosing and curing people. But, also if you look at nursing homes, as well too, it’s really clear that nursing homes now are providing end-of-life care; twenty years ago, in Canada, it was quite often the case that if a person was living in a nursing home and they became ill, for many different reasons, the person would not stay in the nursing home and pass away there, an ambulance would be called and the person would be taken to a hospital. Now, the sad part of that was that these people who were going to pass away anyway, and unfortunately, in the last few hours or days that they were moved, taken to an unfamiliar place, often had some major attempts to try and cure them, or save them, or extend their life, and so you really wonder about the quality of life, you know, in those last few days. There’s now a document in Canada indicating that ninety percent of the people who pass away in Canada now, that those deaths are not sudden and unexpected. Ninety percent of the time we know what’s coming and we can plan for it and it’s not a surprise. So, we’re really rapidly developing some expertise in nursing homes around palliative care. So, I just think things are going to, kind of, get better and better, and of course the other thing too, now across Canada, is we’re really starting to really increase our palliative home care.

Hamish Holewa: And so, just to reiterate, do you believe that the confidence in the nursing homes and at home deaths is leading this trend?

Donna Wilson: Nursing homes began to realise how difficult it was for their residents when they were moved to hospital at the end of life. All around the world, we’ve had this growth of palliative care, and palliative care now is well established in Canada, and a lot of people realise that it’s okay now to let just someone have a natural death, that you don’t have to force them to have treatment; let’s keep you home and not rush you through snow and ice and rain into the hospital where it’s going to be noisy and people are going to poke and prod you, and family can look after you.

Hamish Holewa: Yes, absolutely. Obviously, these findings have an important policy and service delivery implication. Do you just want to talk about them a little bit?

Donna Wilson: When you do a study that is of such interest to governments and health care groups, and it’s published in a really good journal, so people see it, it’s credible; it tends to draw a lot of policy makers and health care group attention. So, it’s been really nice in that way. What I’m starting to see now, is real developments around planning an end of life strategy in the home. We’ve had this idea of aging in place, but now what about dying in place? Can we make the home a place where people can have quality end of life care? On a federal basis, as well too, the only legislation that we actually have to support dying people in the home is we have something called the Compassionate Care Act, which is, if you’re working, you can take eight weeks paid leave from work to care for a dying family member, which sounds like a good idea, but the problem is about half of the people who care for a dying family member are employed, so it doesn’t really help too many people who are looking for work and should be working, but now they feel they should be caring for a dying family member; and eight weeks is often not enough. And the third problem was you only get fifty percent of your salary when you’re on the leave; and the fourth problem was, even if you got this leave, there may not be a job when you get back there. So, I understand federally, as well too, there’s been a much more of an interest in looking at, okay now what can we really do to make sure that there is somebody in the home to care for somebody who’s passing away there. So, it’s been heartening to see how one piece of research can really provide clear information that really has spurred some policy, and some services and a great deal of talk; and one of the reasons why it’s so good to see it is because in England where they had such a nice trend—out of hospital, into the home—now, what’s happened they have a shift out of the home, back into the hospital, and if this trend continues, I feel that in twenty, thirty, or forty years, depending on when this really big baby boomer group is coming through, that there weren’t be any deaths left in the home. So, in Canada, one of the clear messages has been that if we support this shift out of the hospital and into the home or nursing home, it could right back to the hospital and that’s not what we want.

Hamish Holewa: And, just reflecting back on prior trends, what do you think are the important practical implications of your study?

Donna Wilson: Eighty percent of people used to be passing away in Canada, now it’s sixty percent, and so there is a lot of practical implications for that, so we need more support in the home. We need more studies of looking at what information do family members need to provide quality end-of-life care; what can governments do to support workers who need to take time off work; what can we do to avoid potential abuse in the home too, you know, ‘cause there might be some financial will issues, and things like that; and also nursing homes, how can we get people who work in nursing homes very comfortable with the care of dying people. How can we help family members be recognised for the great work that they do look... and difficult work that they do, looking after dying people in the home. It’s a very emotionally draining experience, often, and physically draining experience, so how do we help them and recognise them for the great work that they did, so they don’t have regrets it when it’s over. So again, one little study with just some clear messages, you know, and simple easy to understand, and very timely.

Hamish Holewa: Yes, and the power of research. Well, thank you for sharing with us today those important and quite exciting findings from your study; it’s been a pleasure.

Donna Wilson: Delighted. Yeah.

Podcast Keywords

palliative care, end-of-life care, location of death, place of death, hospital, Canada

Research Notes: 'Keeping Their World Together'

2011-06-13T18:19:00.000-07:00

Interviewee

Dr Pia Riis Olsen, Clinical Nurse Specialist, in the Oncology Department, Arhus University Hospital, Arhus, Denmark

Article

Olsen, PR., Harder, I. (2009) Keeping Their World Together - Meanings and Actions Created Through Network-Focused Nursing in Teenager and Young Adult Cancer Care, Cancer Nursing, 32(6):493-502

Summary

Dr Pia Olsen talks with Hamish Holewa about why she chose to use a qualitative methodology to explore the impact of network-focused nursing strategies on teenagers and young adults with cancer and their significant others. She gathered data via interviews, observations and informal conversations, and says that the use of several forms of data generation resulted in a varied picture, and helped her to validate her interpretations. Pia believes that the observations significantly strengthened her findings, as they allowed her to gain a deeper insight into the dynamics of interactions than she was able to gain from interviews alone.

Transcript

Hamish Holewa: Hi and welcome to Research Notes. Research Notes is a complimentary podcast which explores the methodology and practicalities associated with research. In podcast one-hundred and ten, I talked to Dr Olsen, Clinical Nurse Specialist, in Århus University, Århus, Denmark, about her article and study titled: Keeping Their World Together - Meanings and Actions Created Through Network-Focused Nursing in Teenagers and Young Adult Cancer Care. Published in Cancer Nursing and co-authored with others listed on our website. I start today’s research notes by asking Pia about why she chose her qualitative methodology for this study.

Pia Olsen: I believe that this study had to be qualitative as I wanted to find out what happens when nurses work this way, I wanted to know about the strategies, because it’s quite a new way, you could say a very untraditional way, of working in nursing. I wanted to explore the interaction between the nurses and the teenagers and young adults with cancer, and their significant others, and then I wanted to develop a grounded theory, so, that was why I chose this methodology. I think it would have been very interesting also to do, or to know, the outcome of the network focused intervention, compared to standard care; but to do a controlled study with this very limited population will be very difficult.

Hamish Holewa: And in your analysis you involved a combination of interviews, observations and informal conversations. Do you just want to talk about how you actually combined those data gathering techniques into your analysis?

Pia Olsen: All interviews and all notes from observations, or other communications, were transcribed, text and analysed equally. I used a software program NVIVO, a tool to help me organise the data and to keep track of the links between data and developed categories. You could say the use of several forms of data generation gave a varied picture of what was actually going on in the area that I studied, and it also served to validate my interpretations; and I think that the possibility of doing observations really strengthened the findings, because you get a very much deeper impression of what is actually going on; you get a better impression of the dynamics of the interaction than only the knowledge that you can gain from interviews where people, sort of, tell you about what they feel and their experiences, and so.

Hamish Holewa: Yes, excellent. And just finally, if you got a chance to do this study again, would you do anything differently?

Pia Olsen: No, actually I don’t think so, but there are really a number of studies that I would like to do now, because I think that this concept network-focused nursing has huge potential for being implemented in a lot of other care situations, and a lot of other patient groups, and to have this concept known world-wide you’ll need more research, you need more knowledge. So, I’m really looking forward to exploring a lot more in this area, yeah.

Hamish Holewa: Yeah, excellent.

Podcast Keywords

adolescence, cancer care, psychosocial, significant others, social networks, social support, teenagers, young adults

'Keeping Their World Together': Helping Teenagers And Young Adults With Cancer To Stay Connected To Their 'Normal Lives' During Treatment and Beyond

2011-06-13T18:17:00.000-07:00

Interviewee

Dr Pia Riis Olsen, Clinical Nurse Specialist, in the Oncology Department, Arhus University Hospital, Arhus, Denmark

Article

Olsen, PR., Harder, I. (2009) Keeping Their World Together - Meanings and Actions Created Through Network-Focused Nursing in Teenager and Young Adult Cancer Care, Cancer Nursing, 32(6):493-502

Summary

Teenagers and young adults with cancer face a dual crisis. Their health and lives are threatened, and they are thrown back into dependent roles with their parents, just as they have begun to establish their independence. School and career plans are disrupted, and they often lose contact with friends and peers, who are busy 'getting on with life', while they face arduous cancer treatment and uncertainty about their futures. This week, Hamish Holewa, speaks with Dr Pia Olsen, who has found that when it comes to asking for support from family and friends, young people with cancer often don't know what to ask for, can't foresee what their needs will be during and after treatment, and tend to overlook the role their wider social network can play. Pia describes how 'network meetings', which bring people from the patient's private social network together with people from the patient's health professional network can help 'break the ice', keep lines of communication open, and help young patients with cancer mobilise their support networks at a time when they might otherwise be cut off from their normal lives.

Transcript

Hamish Holewa: Hi and welcome to IPP-SHR Podcasts, I’m Hamish Holewa, and for today’s podcast I’m speaking with Dr Pia Olsen, Clinical Nurse Specialist, in the Oncology Department, Århus University Hospital, Århus, Denmark. I am speaking today with Pia about her article and study titled: Keeping Their World Together - Meanings and Actions Created Through Network-Focused Nursing in Teenagers and Young Adult Cancer Care. Published in Cancer Nursing and co-authored with others listed on our website. Hi Pia, thanks for speaking with us today.

Pia Olsen: Hello.

Hamish Holewa: Teenagers or young adults diagnosed with cancer have the potential to experience a ‘dual crisis’. Do you want to provide our listeners what that means and an overview of the unique challenges faced by the teenagers and young adults’ population with a cancer diagnosis?

Pia Olsen: Yeah, what I mean by a dual crisis is that at first too that these young people tend to not only experience a significant threat to their health and to their lives, but also experience how they are cut off from their usual lives as young people. They have just started building independent lives and now experience how they are, sort of, thrown back to a dependent role with their parents; school and career plans are disrupted, and they often lose contact with friends and peers who are busy getting on with life. It feels as if they are dropped from a train at high speed and left behind, as they often say. So, cancer, and treatment that often goes on for several months, is also a threat to achieving their developmental goals and they report that catching up socially is one of the most difficult things in their survivorship. They also face difficulties in building up intimate relationships with a partner: for example, do they dare to reveal their cancer; will the partner fear to lose them to cancer. Do they dare to connect; is their body attractive; will they be able to have children after chemotherapy, and so on; and what kind of education, career and job will they be able to manage. Do they need to drop their dreams and head for new possibilities? And then there is the whole issue about the uncertainty of the future. So, there are a number of emotional and existential issues: for instances, they are more likely to be distressed compared to other patients, and there they also face a feeling of being more mature and serious than their peers; and when they are ready to pick it up again, their peers are gone, have moved away for education, or have settled with a partner or family. Typically, they are not used to hospitals and they don’t know what to expect or how to act as patients either, so, the fact that most hospitals are organised to serve children or adults, emphasises their alienation, you could say—they just don’t fit in. Well, also information material and communication is centred to the adult population, and teenagers and young adults find them boring and irrelevant—it’s usually not delivered in their language. So, yes, yes, they face numerous challenges and so do we as health care professionals.

Hamish Holewa: Absolutely. And, in response to those unique psycho-social challenges, your hospital has developed a dedicated inpatient youth unit for adolescent and young adult cancer care. Do you just want to provide a summary of that setup of the unit and the services that are offered?

Pia Olsen: Yeah, the unit is part of an adult ward and consists of two rooms, with two beds in each. Very young patients can share rooms with peer cancer patients. There is a so-called youth corner for the young patients, in a large living room, where they can hide away with their friends and family, and it’s all furnished in corporation with ideas from former young patients: so walls and curtains are colourful, and there are all kinds of IT facilities, televisions, plays and posters, to make the surroundings look a little like their rooms at home. And, a group of nurses are trained to care for the young patients and their families. The service is characterised by the focus on the social network of the TYAs: for example, there is an exclusive attitude towards the social network, and the nurses use every opportunity to emphasise the importance. Parents or partners can stay as much as possible, and friends are encouraged to visit the patient, and the nurse makes school visits, if the young patient wants that. They make a huge effort to involve all the multidisciplinary resources across the health care system. And then there are two key interventions, called ‘parent-free time’ and ‘network meetings’, where parent-free time is time where parents or partners, or the young patient, can have private talks with a nurse, without the other person being present, and network meetings, are meetings arranged for and with a young person. It usually takes place within the first five weeks of treatment, where the young patient invites people from his private social network and the nurse invites people from the health professional network; and during these meetings, people are informed about the disease, treatment and its adverse affects, and the impact on life and relationships are discussed and it is discussed how friends and family, school, or employer, can support the patient and the family. Often, we see twenty to thirty people attending a meeting like this. So, these are our key interventions, yes.

Hamish Holewa: And, in your article you mention those network meetings—which are arranged through the nurse—helped ‘break the ice’ or were ‘telling it straight’ as quoted. Do you want to elaborate on the barriers that teenagers or young adults, and significant others, face in regards to communicating their diagnosis with their wider social network?

Pia Olsen: One thing is to say, ‘I’ve got cancer’, or ‘My son has got cancer.’ Just speaking this out makes the fact become real to them, it involves their own fear and anxiety, but, in general, it’s hard for people to mention the unmentionable. Cancer also disturbs the easy and unproblematic living of their friends and makes the young person special in a negative way. On one hand, they really want their friends to know and to understand how they are, and to know the implications of having cancer; on the other hand they don’t want to be treated differently. At the same time, they are more concerned about surviving as a family and to handle all the new challenges, and they often forget that their wider social network can support them in a number of ways. Usually, people just don’t know how to give the right support. So, the young person, for his part, well he doesn’t know what to ask for, and they cannot foresee the needs that they will have during the treatment and afterwards.

Hamish Holewa: And, why do you think nurses are in a unique position to facilitate this social support that goes really beyond immediate family?

Pia Olsen: Well, nurses are usually the health care professionals who get to know the young patient and the family best during the treatment, and they often build up a very trustful relationship. At the same time, they are legitimate professionals who have experience from similar situations and they can inform about their knowledge about the disease and the treatment, and its consequences. While they can speed up the dangerous words and demystify, and once the words are said they are not so dangerous anymore. It, sort of, facilitates open communication, and then they are also key persons to mobilise and coordinate the multidisciplinary network and the cooperation around the patient and their family. So, that makes their position unique in the health care system to work in this way, I think, yeah.

Hamish Holewa: Yes, absolutely. Well, Pia, thank you for speaking to us today on IPP-SHR Podcasts. It’s been a pleasure.

Pia Olsen: You're welcome.

Podcast Keywords

adolescence, cancer care, psychosocial, significant others, social networks, social support, teenagers, young adults

Research Notes: Psycho-Social Care of Cancer Patients: A Global Imperative

2011-06-13T17:53:00.000-07:00

Interviewee

Dr Antonella Surbone, Adjunct Professor, Department of Medicine, New York University Medical School, New York, NY, USA

Article

Surbone, A., Baider, L., Weitzman, TS., Brames, MJ., Rittenburg, CN., Johnson, J. (2010) Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement, Supportive Care In Cancer (18)2:255 - 263

Summary

The psycho-social study group of the Multinational Association of Supportive Care in Cancer (MASCC), is an international, multidisciplinary organisation set up in the late 1980s by oncologists in the US, Europe and Australia, to ensure that supportive care is integral to the care of cancer patients, rather than an adjunct to medical care. MASCC is currently led by Dr Antonella Surbone. This week, Antonella talks with Michael Bouwman about the need to use both qualitative and quantitative methodologies in psycho-social cancer research, the importance of understanding how well patients' psycho-social needs are being met, and ensuring that assessment tools are user-friendly for patients, staff and systems, as well as having high validity and reliability. She says there is great individual and cross-cultural variability in terms of how much research participants are willing to reveal, and that it is unethical to conduct psycho-social research unless there is a commitment to intervene and address the needs identified through research, by designing or redesigning services and improving or establishing resources.

Transcript

Michael Bouwman: I’m Michael Bouwman, and in Podcast number one-hundred and nine, I interviewed Dr Antonella Surbone about her paper: Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. I asked her if she could give a brief description of the psycho-social study group and MASCC—which is the Multinational Association of Supportive Care in Cancer.

Antonella Surbone: It’s an international and multidisciplinary organisation, which is dedicated to supportive care in patients, where for supportive care we intend to cover all of the aspects of having cancer for patients, and of undergoing treatment, and of the evolution of the disease, whether it is towards long-term survivorship, or towards end of life. Supportive care is not to be intended as something that comes as an adjunct to main medical care, but on the contrary that it is an integral part of it. MASCC was established by groups of physicians/oncologists who worked independently, both, in Europe and in the United States, and also in Australia. It put together all cancer professionals, so it’s not just an international, but it’s also truly a multidisciplinary association. The first aim was to take care of the prevention and management of the adverse effect of cancer and its treatment, and especially of physical and psychological side effects at the early stages of the disease, and then it progressed towards having more and more interest for the entire aspects across the continuum of the cancer experience. MASCC has published some very important measurement tools and guidelines, which have become used worldwide. It has an official journal, which started in the early 90’s, which is the Journal of Supportive Care in Cancer, and has annual support meetings and symposia, and now online meetings as a website. And in 2010, this year, we are going to publish a handbook of supportive care. Presently, MASCC is divided into seventeen study groups and one of these is the group that I lead, which is the psycho-social study group. What we did as the psycho-social study group was to pay particular attention to the ethical, psychological and social aspects, and to try to define them as an integral component of supportive care in cancer, as I said before. We decided a study group to concentrate on bringing attention to the psycho-social issues on communication, on education, but also on research and policy.

Michael Bouwman: You mentioned that psycho-social health research is unique and use a range of methodologies. Do you want to talk about your approach and your reasons for this?

Antonella Surbone: In preparing our position statement, which is aimed at bringing to the forefront the psycho-social aspects of cancer care, we obviously did an extensive review of the literature, and we also reviewed the methodologies used in psycho-social research, and I think that our conclusion—and certainly is my personal one—is that psycho-social research is different from more mainstream medical research in cancer care: it does require, both, quantitative and qualitative approaches and methodologies; and the reason why the two should be combined is because, the issues that we explore in psycho-social research include very broad aspects—ranging from the physical; the emotional; the psychological; the spiritual; environmental; social; the relational aspects; sexual aspects; financial aspects and factors, and this all together impact on the patient’s life, also on the life of the patient’s family and the patient’s friends and community. What’s different in psycho-social research is that we want to evaluate all these factors as they are seen from the patient perspectives, but not so much in the terms just of an evaluation of the quality of life, as much as in terms of, really, how patients/do patients identify their needs, which kind of importance they give to various needs, and we add another dimension which is, to investigate whether, and to what extent, do patients consider their psycho-social needs are actually met. That’s why the combined quantitative and qualitative approach is needed. Of course, there are a series of assessment tools, which have to have some basic characteristics of reliability and validity, of course, as in all kinds of research, but also, in this kind of research they need to be user friendly—patients must be comfortable with the instruments that are used. In this respect often, qualitative research helps, because the element of narrative may be especially important in describing, or in identifying, psycho-social needs. They also have to be staff and system friendly, of course, and they have to take into account temporal context, I would say. The last point about psycho-social research is that the aim is to understand the needs, certainly with the help of our patients and their family to identify them, but then, of course, to move to action, in terms of designing, or redesigning services and also improve resources or establish resources, when they’re not available.

Michael Bouwman: And are there any methodological, ethical issues associated with psycho-social health research? Particularly as MASCC does a lot of work in cross-cultural settings.

Antonella Surbone: There are some special peculiar ethical issues with respect to psycho-social research, and I like to stress them because I think it’s very important for our listener to take into consideration individual and cross-cultural variability in facing psycho-social issues. Many of the aspects that we are studying, and we are offering to address, involve very personal aspects of life, and there is a major individual and cross-cultural variability with respect to, for instance, the sense of privacy in speaking about whether it is issues of body image, or sexuality, or fertility, or in speaking about financial issues, support issues. Patients may have very different thresholds in terms of how much they are willing to reveal and it’s very delicate. And finally—and I think that this has been said very well in recent publications—that when we identify a need, it would be absolutely unethical to do so unless we are ready to address it. So, being that psycho-social research is a research about needs, we have to do it— to perform it only when we are absolutely ready to intervene in different forms.

Michael Bouwman: Well, thank you very much Antonella, for speaking with IPP-SHR Podcasts today.

Podcast Keywords

cancer, supportive care, patients' psychosocial concerns, unmet psychosocial needs, psychosocial interventions

Psycho-Social Care of Cancer Patients: A Global Imperative

2011-06-13T17:51:00.000-07:00

Interviewee

Dr Antonella Surbone, Adjunct Professor, Department of Medicine, New York University Medical School, New York, NY, USA

Article

Summary

In 2009, there were 25 million people living with cancer worldwide. The World Health Organisation has established cancer as a world health priority, and the number of cancer survivors continues to rise due to the ageing population and improvements in cure rates. This week, Michael Bouwman talks with Dr Antonella Surbone, leader of the psycho-social study group of the Multinational Association for Supportive Care in Cancer (MASCC), about her findings on the major psycho-social health issues facing cancer patients worldwide. Antonella says that survivorship is now a major challenge for professionals and health care systems, citing research that shows health professionals are often unaware of the psycho-social health care resources available, and health professionals, family, friends and caregivers, tend to find it much easier to understand the medical and physical needs of patients than their psycho-social needs. She says most psycho-social needs involve issues of information, and the seemingly small details of life which impact on the well-being of patients at all stages, such as transportation, financial assistance, managing health and family needs, 'navigating' the system and accessing health care services. Antonella stresses that survivorship also poses a cultural challenge, as stigmatisation and discrimination of cancer survivors is common in some countries.

Transcript

Michael Bouwman: Introducing Dr Antonella Surbone, Professor in the Department of Medicine, at New York University Medical School, New York, USA. I am speaking with Antonella about her study and article: Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Published in Supportive Care in Cancer and co-authored with others listed on our website. Welcome. Your paper documents the psycho-social concerns and needs of cancer survivors. I wondered if you could summarise your key findings on that topic.

Antonella Surbone: The recognition of psycho-social needs for all cancer patients, whether in the active phase of their illness or of their treatment, or if they progress towards survivorship or end of life, the beginning of this research is relatively recent. And in 2007, in the United States, the Institute of Medicine issued a report which was entitled, ‘Cancer Care for the Whole Patient’, meeting psycho-social health needs. There was also a position statement by the ONS, which is the Oncology Nurse Society; and basically, they started from realising care providers tend not to understand the psycho-social needs of their patients. Even more interesting, I think, is that very recent data showed that even among family, friends and caregivers, there is a generally and much better assessment of what the medical and physical needs of their sick relatives or friends are, than of their actual psycho-social needs, which only stresses how difficult it is to really grasp the psycho-social needs.

Michael Bouwman: Yes.

Antonella Surbone: The other thing that was found as a premise by the IOM was that oncology professionals do not consider psycho-social care as integral to cancer care, and this is especially true during the early stages of the disease—informing patients, of making a diagnosis and then deciding about treatment—the focus tends to be on the more acute medical issues. On the contrary, research has truly established that all the psycho-social issues are there from the beginning. Another important point that the IOM report stressed, was that providers are generally unaware of the psycho-social health care resources. I have learnt, in fact, in practising across the ocean, there are way more resources, within the different health care systems, but truly we as oncology professionals tend to be unaware of that, and therefore, that’s one main reason why we don’t refer patients to those resources. This was, sort of, the premise to say that the psycho-social needs apply to the entire continuum of the disease, and mostly I would say, that they concern issues of information, issues of daily life—and by daily life I mean things that may seem small details and on the contrary play a very important role in the wellbeing of the patient at any stage, such as transportation, or managing health and family needs, or navigation problems—accessing health care services; then of course, issues of financial assistance. In my personal experience as a medical oncologist, I found that a major concern of adults with cancer, are issues of assistance to their children while they are sick.

Michael Bouwman: Yes, very important.

Antonella Bouwman: Then, of course, there are the emotional and spiritual concerns, and up to, what is called, emotional distress. And then there are particular issues that regard cancer care in the elderly, or in children; then the needs towards end of life and the needs of survivors, and finally, the needs of family and caregivers. As of 2009, there were 25 million people living with cancer worldwide, and a large number of these being cancer survivors; and survival, of course, is increasing due to the aging of the worldwide population and to the improved treatments, so that the curability rates are dramatically risen. And, the WHO, the World Health Organisation, in 2005, for the very first time, established cancer as a world health priority, which tells a lot about the importance of the problem, and the fact that it is no longer an illness of...only of the industrialised countries, but unfortunately is spreading everywhere.

Michael Bouwman: Yes.

Antonella Surbone: There was a declaration issued in 2008, where the WHO included some important psychological aspects, in what they call the provision of basic cancer care for patients and survivors, in developed and developing countries. Survivors are increasing, and survivorship is becoming a real challenge to individual professional and to health care systems. The issue of survivorship is also a...poses also a cultural challenge. The reason why this is so, is that, the consideration of survivorship as a dimension of the cancer illness trajectory is indeed it’s a relatively new concept, but not as new as we may think. The psycho-social issues for cancer survivors vary tremendously, but some patients adapt more easily, while others have to struggle, with really persistent psychical disability or major psycho-social distress; and still in many countries, some survivors are stigmatised when not openly discriminated.

Michael Bouwman: Yes. And could you tell us a little bit more about the common issues facing cancer survivors.

Antonella Surbone: Probably the most common issues in cancer survivors are of course fear of relapse and then issues of consciousness of different body image, some awareness of being different. Concerns about sexuality and fertility, this is very important, there’s a relatively recent study that showed that sexuality and fertility issues ran just third among the concerns of patients who have had cancer. Issues of employment and insurance, for those countries where there are insurance issues. The employment issues, they may have been overestimated and recent research shows that most young patients, young survivors, do have productive jobs. Certainly, one thing that needs to be done is to provide accommodation for disabilities that may have intervened after cancer treatment. Then the psycho-social factors and cancer survivors relate to meeting families expectations, a major problem is the role and how the roles and dynamics vary within the family, and clearly, all the psycho-social needs and concerns vary with the type of disease, with the stage of disease, with the medical sequelae of the cancer, they also vary with gender and they vary with age.

Michael Bouwman: Well, thank you Antonella for speaking with IPP-SHR podcasts today. It’s been a pleasure.

Antonella Surbone: Thank you.

Podcast Keywords

cancer, supportive care, patients' psychosocial concerns, unmet psychosocial needs, psychosocial interventions

Research Notes: 'Everyday Ethics': Tailoring Ethics Education to Meet the Needs of Doctors in Paediatric Outpatient Clinics

2011-06-13T17:49:00.000-07:00

Interviewee

Dr Margaret Moon, Assistant Professor of Paediatrics, Department of Pediatrics, The Johns Hopkins School of Medicine and Berman Institute of Bioethics, The Johns Hopkins University, Baltimore MD USA

Article

Moon, M., Taylor, HA., Hughes, MT., Carrese, JA. (2009) Everyday Ethics Issues in the Outpatient Clinical Practice of Pediatric Residents, Archives of Pediatrics & Adolescent Medicine, 163(9):838-43

Summary

This week, Michael Bouwman talks with Dr Margaret Moon about how she was able to overcome some of the limitations of previous medical ethics research, and use her findings to enrich the teaching at John Hopkins Medical School, by using a multi-method qualitative approach to study the ethical challenges faced by residents in a paediatric outpatient clinic. She says conducting in-depth interviews with a sub-set of residents as a first step, was extremely useful, as it enabled the researchers to get an understanding of the language residents used to describe ethical challenges. Without this understanding, she says researchers would have missed much data during the observational stage, in which residents were observed discussing patients with their teachers. Margaret describes how constraints particular to this study meant it was not possible to observe residents talking with patients, or to directly record discussions between residents and their teachers. Margaret says many studies about ethics start with a very narrow view of ethics, and try to engage people in that view often through surveys. She says the strength of this study lies in the fact that it started with the broadest possible sense of ethics, based on experience in clinical practice, then whittled it down through an iterative analysis of the qualitative data.

Transcript

Michael Bouwman: I’m Michael Bouwman, and in Podcast number one-hundred and eight I interviewed Dr Margaret Moon about her paper: Everyday Ethics Issues in the Outpatient Clinical Practice of Pediatric Residents. I asked her if she could describe to our listeners her multi-method qualitative methodology.

Margaret Moon: We started this project by talking to a sub-set of paediatric residents to get a sense of their understanding of the notion of ethics. So, we did some in-depth interviews with a small group of paediatric residents to hear their language, before we started the observation study, and the reason we did this was because those of us who were doing the observations are ethicists, in addition to clinicians, so our use of the language is very much full of, sort of, ethics jargon, and sort of the language of ethics. And, so we realised that it was entirely probable that our residents wouldn’t be using the same language. So, before we started, we wanted to, sort of, get our universe of observation clarified. So, we spoke with some residents, in these in-depth interviews, to make sure that we understand their use of the ethics language, and it’s good that we did so because something very important came out of it, and that is that residents don’t use, sort of, ethics language when they’re telling stories about ethics problems, so, if we had targeted our observations to ethics language, we would have missed many very important observations. So, that was the in-depth interviews to start, and then our observation work was actually really just sitting in the outpatient clinic listening to residents talk to their attending faculties, so their teachers, about the patients they were seeing, and we just sat in a corner of the room and wrote down everything that we heard that sounded anything at all like a problem of conflicting moral obligations, or conflicting professional obligations. We just wrote notes, transcribed those notes and put them through a qualitative analysis software and generated the themes, you know many many repetitions of, sort of, theme generation till we finally came to a consistent set of themes that 2:17 reported in the paper. And then the third part of the methodology was to do the in-depth interviews with the faculty afterwards, so the teaching attending in the clinical, to hear their stories about what they understood to be ethics and how they approached ethics issues in the clinic, so that we could tie that back together to the experience of the residents.

Michael Bouwman: Okay, and could you please talk about your decision to engage in in-depth interviews before the observational phase of the study, and the impact this had on the final results?

Margaret Moon: So, that was again the point that we made of trying to talk to the residents to get a better sense of their language about ethics, so that we didn’t make the mistake of observing too narrowly. I think it helped us avoid some problems of previous studies of ethics that tend to use, sort of, the language that’s already existing, and so would study their surveyed residents about their experiences with ethics, but they always started from the ethics language and not from the residents experience. So, the in-depth interviews before the observation part helped us to understand very much more about the residents’ experience, and so, helped us to learn what language to listen for.

Michael Bouwman: And what were the challenges you faced in the observational part of the study and how were these difficulties overcome?

Margaret Moon: It’s several actually major obstacles: the first one was, initially we wanted to do this study in the clinic rooms with the patients, actually listening to the residents, the trainees talking to the patients, and it turned out that was impossible for a couple of reasons, one that the rooms were too small and another body in there would have been too much of an obstacle, and also people thought it would be too intrusive and it might actually change the way care was provided, which is not what we wanted to do. So, one big obstacle was that we could not include the patient’s voice in any of this, so we hope to change that with our next observation study. But, the other interesting obstacle was that the paediatric clinic is a very very busy place, so sitting in the room listening to the preceptor talking to, maybe, four or five residents in and out of the room at the time, and one or two precepting attending, teaching attending, with trying to really stay focused on the stories we were hearing and not get distracted by all of the other things happening was actually remarkably difficult. And I’m a paediatrician and the residents I teach are in the same clinic, so, there would be times when it got busy the residents would want me to stop my observation and help them with something and I had to, you know, say, ‘No, I’m really doing a different job today.’ So, that was interesting, I think that qualitative observation work is often very interesting, for that way it’s hard to be the observer and not a participant in the process.

Michael Bouwman: Yes, you need to wear one hat at a time.

Margaret Moon: It’s very hard sometimes.

Michael Bouwman: And, your experience with recording field notes, could you make any suggestions for our listeners as to how this can be done effectively?

Margaret Moon: So there’s lots of different ways to do it, and I think in many settings it’s easy just to tape record or even video tape the whole interaction. For us, that would not work, because we needed to make it very clear to the residents that we were not collecting any identifiable information, so that they wouldn’t feel constraint in the comments that they were making to their teaching attending. So, we really had to do this in the least obtrusive way possible, which meant just handwriting everything. That really depends on how quickly you can write and how clearly you can listen, and I think we miss a lot that way, but I think it ended up being exactly the right approach for this setting.

Michael Bouwman: And lastly Margaret, what do you think are the benefits of a qualitative approach to data collection and analysis?

Margaret Moon: I’m a big fan of qualitative work, because I think, especially for something like ethics, so much of it is about the stories that people tell and it’s very hard to limit it to a couple of words, or to a survey. The experiences that people are having, and the way they describe them, really points us in the direction of what we need to teach, and since this work is all about how to make education better, we need to be as open as possible to the experiences of our learners, and the best way to do that is to take a very very open qualitative approach where you collect as much information as you can about the experience and then whittle it down. So many studies about ethics start with a very narrow view of ethics and then try to engage people in that. This study helped us start from the other direction with the broadest possible sense of ethics that we then whittle it down through iterative analysis of the qualitative data. I think it’s a much more robust and much more realistic approach. Unfortunately, it’s harder to get qualitative studies published in the medical literature, you know, we all love numbers, and qualitative work is not so much about the numbers, it’s much richer, in many ways, but I think there’s still a lot of prejudice against it in the medical literature, so it takes a little bit more to get this work published. But still, it’s the right work, and certainly, it’s enriched our teaching tremendously.

Michael Bouwman: Yes, and I think that prejudice would reduce over time, for sure.

Margaret Moon: Eventually.

Michael Bouwman: It’s been a pleasure talking to you.

Margaret Moon: Yes, and a pleasure talking with you too.

Podcast Keywords

bioethics, ethics, principlism, morals

'Everyday Ethics': Tailoring Ethics Education to Meet the Needs of Doctors in Paediatric Outpatient Clinics

2011-06-13T17:45:00.000-07:00

Interviewee

Dr Margaret Moon, Assistant Professor of Paediatrics, Department of Pediatrics, The Johns Hopkins School of Medicine and Berman Institute of Bioethics, The Johns Hopkins University, Baltimore MD USA

Article

Summary

When Dr Margaret Moon was given the task of developing a new ethics curriculum for paediatric residents at the John Hopkins Medical School, she found that existing ethics education, with its focus on end of life and beginning of life issues, was not helpful for the residents, who were struggling with 'everyday' moral conflicts over how to provide adequate care for their child patients, without jeopardising the safety and functioning of fragile families living in poverty. Margaret found that residents at John Hopkins Hospital faced challenges in managing the therapeutic alliance with parents and caregivers, sometimes having to 'bend the rules' for angry parents in order not to lose access to a child in need of care. They also faced ethical challenges in protecting patient privacy and confidentiality and using professional authority appropriately. This week, Michael Bouwman talks with Margaret about her findings; about the importance of understanding ethics in clinical practice, and about the need to use research to inform ethics education.

Transcript

Michael Bouwman: I’m Michael Bouwman, and today I’m introducing Doctor Margaret Moon, Assistant Professor of Paediatrics, in the Division of General Paediatrics and Adolescent Medicine, at the Johns Hopkins School of Medicine; and Freeman Scholar in Clinical Ethics, at the Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA. I am speaking with Margaret about her study and article: Everyday Ethics Issues in the Outpatient Clinical Practice of Pediatric Residents. Published in the Archives of Pediatrics and Adolescent Medicine, and co-authored with others listed on our website. Welcome.

Margaret Moon: Thank you very much.

Michael Bouwman: Could you start by talking about the need for a description of ethical issues encountered in paediatric practice?

Margaret Moon: Sure. There’s actually two reasons I think that we embarked on this bit of research: one is we were given a new, sort of, a challenge in developing a new curriculum in ethics education for trainee residents at the John’s Hopkins Hospital; and in looking at our plans for ethics education, we realised that education of any sort if best when it’s based on an empirical understanding of what the learner’s needs are. And as we tried to figure out what that was for ethics, we realised there really hadn’t been very much written that was going to be useful for us. So, we started to look, again, at exactly what the residents were experiencing in the outpatient setting, so that we could develop teaching that spoke to their needs. Interestingly, most of the education in ethics really is based on, sort of, a pretty traditional understanding of ethics, and it usually focuses on, what we call, big ticket items—sort of, end of life issues and beginning of life issues, you know, life and death issues, as opposed to the things that occur on an everyday basis that makes physicians stumble over the care that they provide. Most medical care, in the US and other countries, is delivered in the outpatient setting; specifically most paediatric care is delivered in the outpatient setting. We realise it was incredibly important to take a look at the outpatient setting and to take a very close look at, what we call, everyday ethics, not the big ticket items but really just the simple everyday things that physicians encounter that, sort of, stand in the way of them providing the care that they feel is most appropriate.

Michael Bouwman: Fantastic, And the findings from your study, on ethical issues in the outpatient clinical practice of paediatric residents, posits the theme of promoting the child's best interest in complex and resource-poor home and social settings. Could you talk about that?

Margaret Moon: Sure. Just to set it up a little bit: when we did this bit of research, we were looking at ethics issues as issues that arose out of conflicting moral obligation—so physicians would be seeing a complicated patient in the outpatient setting, and find out that the moral duty that they felt was so important and the care of that patient actually were in conflict. And so, in the setting that we have, John’s Hopkins Hospital is in Baltimore City, which is, you know, very much an urban setting, marked by poverty and complex social situations, so a lot of the children that we were caring for were living in families that were struggling with very significant social and economic issues. For instance, I mean one situation was homelessness: many of our families are, sort of, facing the threat of homelessness in a persistent fashion; some of our children live in homes that really are not under the control of their parents, they’re living off the kindness of neighbours or relatives, and so, sometimes we would have to change the care that we were providing because the home situation of the child was so unstable that we had to be very careful not to threaten it. I remember one child in the study who had a lot of complex psycho-social problems, in addition to complex medical problems, and we were hoping to get more effective social work involvement in the family, but it turned out that this family lived with an elderly aunt who would put them out if there was any more confusion, anymore social work involvement, anymore people coming to the home trying to help care for this child. The residents had to figure out how to change their approach to this patient and meet, both, the conflicting demands of looking out for the welfare of the child, but at the same time, protecting the safety of the family. So those sorts of situations we encountered a lot and those are not things we typically teach in ethics, but they’re really, very much, creating conflicting moral obligations in providing the very best care for a child, but at the same time, yielding to the facts of the family’s situation.

Michael Bouwman: Yes, and your findings also note the themes of managing the therapeutic alliance with parents and caregivers, and protecting patient privacy and confidentiality. Would you elaborate on these findings?

Margaret Moon: Sure, the therapeutic alliance is, actually, one of my very favourite themes within clinical medical ethics, not just in paediatrics but also in the adult medicine world, but in paediatrics, in particular, because physicians only really have access to children through their parents, so instead of just the doctor/patient relationship, it’s a relationship between the doctor, the parent and the patient, so it’s a triad, and, as you might guess, sometimes that triad is remarkably difficult to manage: I know many many people who decided not to become paediatricians because they couldn’t stand having to balance between the child and the parent. So, in order to be a good paediatrician you really have to identify and accept that need to balance. So, therapeutic alliance is often very tenuous—you know, in our study there were several examples of parents who presented to the clinical with distrust, or anger at the clinical setting, anger at the system of medicine, or parents who had their own mental health problems, parents who were not very good parents, who were on the border of even caring for their children adequately. So our trainees really had to look at those situations very carefully and try again to balance respect for the parents—respect for the autonomy that the parents deserved, respect for their skills as parents, respect for their needs as parents, all the time trying to balance the best interests of the child. So, sometimes having to, sort of, bend the rules a little bit for the parent who is, you know, crazy and angry and misbehaving, just so we wouldn’t lose access to a child who was in need of care. That’s a very difficult situation, but the lesson has to be, over and over again, that we only have access to children through their parents, and the wellbeing of the child very much depends on the wellbeing of his or her parents. So, there’s a lot of... a lot of balancing going on there.

Michael Bouwman: Yes, it’s a dilemma and there’s no easy answer.

Margaret Moon: There is no easy answer but it’s a constant fascination, that’s for sure.

Michael Bouwman: Using professional authority appropriately is the last theme identified in your study. Could you please explain this to our listeners?

Margaret Moon: The theme about using professional authority appropriately, it’s again something that is tremendously challenging. So, we teach a lot about advocacy, we teach our residents that their job is to advocate for their patients and try and make the world a little bit better for their patients. As you might guess, sometimes parents come in asking for things that are an unfair, so one example from our study was a parent who asked a resident to write a letter to the housing authority saying that she needed a bigger apartment because her two children both had attention deficit disorder and were too rambunctious to share a bedroom. So, you know, having a bigger apartment would make this family’s life better, but it was very difficult for the resident to say that there was a medical need for it. They had to find a way to, both, advocate for the child’s wellbeing, the family’s wellbeing, at the same time promoting their duty to be fair and just and honest. So, these sorts of pressures, to misuse professional authority, are very commonplace in many outpatients.

Michael Bouwman: And finally Margaret, what do you think are the practice implications of your research?

Margaret Moon: Yeah, so we started this study with an eye to education: our project—within the Bermen Bioethics Institute, at John’s Hopkins University, and then again, with our teaching in the School of Medicine—is all about coming up with a better approach to keeping clinical ethics to medical trainees. We’re hoping that the implications of this are twofold: one that we will encourage people to recognise ethics education is better when it starts from an empirical basis, and that we ought not to waste residents’ time by teaching things that really aren’t going to be applicable to the care that they’re trying to provide. So, that empirical basis ethics education is one of the very practical points that we’re hoping will come out of this. The other one is to just engage further in this conversation about everyday ethics, and the importance of understanding everyday ethics in clinical practice, as opposed to the limits of the quandary ethics, or the big ticket item ethics, has really been the focus of education in the past and even still today. So those are the two very practical points that we’re hoping to come out. We’re doing more work along the same lines, trying to expand our understanding of everyday ethics in other settings—the adult medicine setting and the surgery setting—and then also on the inpatient setting. So, there’s a lot more work to come of this, but I think we have a good start on trying to expand the empirical basis for ethics education and really trying to encourage training programs to train people to identify ethics issues, be sensitive to ethics issues and to develop some framework for analysis of ethics issues in the everyday settings, part of everyday clinical practice.

Michael Bouwman: Well, congratulations and thank you very much for sharing your research with IPP-SHR podcasts today.

Margaret Moon: Yeah, it’s very interesting stuff.

Podcast Keywords

bioethics, ethics, principlism, morals

Research Notes: Detecting Cancer Earlier: The Need for New Strategies and Interventions for GPs and Primary Carers

2011-06-13T17:43:00.000-07:00

Interviewee

Dr Alexander Molassiotis, Professor of Cancer and Supportive Care, School of Nursing, Midwifery & Social Work, University of Manchester, UK

Article

Molassiotis, A., Wilson, B., Brunton, L., Chandler, C. (2010) Mapping patients' experiences from initial change in health to cancer diagnosis: a qualitative exploration of patient and system factors mediating this process, European Journal of Cancer Care, 19(1): 98-109

Summary

Dr Alexander Molassiotis describes his use of a 'time line' approach to understand delays in cancer diagnosis. He explains the process of identifying 'key events' during interviews with patients and care-givers, from the first time they noticed a change in health, to the point of diagnosis. Alexander describes how his initial plans for the methodology needed to be adapted due to the limitations of medical records, and the striking differences that soon emerged between the eight diagnostic groups included in his study. He stresses that qualitative approaches generate hypotheses, give researchers an in-depth understanding of patients' perspectives, help to make sense of quantitative findings, and are imperative as health care systems become more patient-centred.

Transcript

Hamish Holewa: I'm Hamish Holewa and this is Research Notes. Research Notes is a complementary podcast where we explore the practicalities, issues and methodologies associated with psycho-social health research. In Podcast one-hundred and seven, I spoke to Dr Alexander Molassiotis about his article exploring factors relating to the late diagnosis or cancer symptoms. I start this podcast by asking what are the benefits of using the qualitative methodology for this research?

Alexander Molassiotis: The benefits of qualitative research are quite well known, it’s more about constructing the basic perspectives and being able to understand, in this particular case, the events that happen from a patient perspective, and most of the health care systems are moving to a more patient centred health care system and it’s very important to be able to have the patients view from that. Qualitative research is important for generating hypothesis, for understanding something more in-depth, for making sense of some of the numbers that we get in qualitative research and so on. Particularly in this specific study that we published, I guess qualitative work is probably one of the few, if not the only option we have because we can’t really do any other design which would be practical. So, qualitative work, in this particular example, has been probably the only option we had. The other option would be, of course, to have an epidemiological study of cancer of thousands of people, rather than of patients, and follow them up for many many years and see how many of them develop some symptoms, and then from that point onwards, follow them up for again quite a few years. And, obviously, you can understand, that this is an impractical and very costly, and potentially inappropriate system of understanding the factors behind the delays in diagnosis.

Hamish Holewa: So, it’s about using the right tool for the right job.

Alexander Molassiotis: Indeed, yeah.
Hamish Holewa: In your study you used a unique analysis method, where you were looking at the charts, as well as the interviews, or recordings, with the patients or the people. Do you want to talk about that process of data analysis?

Alexander Molassiotis: This process has been validated in the past—Jessica Corner professor here in the UK has published a few papers here with this method. It is a method of mapping events with time: so, initially you create a time plan, and then based on the information that comes through the patient interviews you try to put the event on the time plan that we have developed. So, you establish the key event, where possible, and you allocate this information from the patient interviews into this key event. Also, within this key event chart, we have used a theoretical model, and that gave us also some good ideas of what information we should be looking at. We tried also to develop some numbers out of that—so if patients were able to describe the time it took from when they had the change in health, or the new symptom, until they were diagnosed. They were giving us an indication of the numbers, but that wasn’t always successful, particularly for the symptoms that went back probably a couple of years, or their recollection of the event wasn’t great. But, for the events that happened within the last few months, people were relatively clear on the timing, so we tried to depict this information as well.

Hamish Holewa: You made the timeline from the patients' interviews. Did you cross reference it with charts or audits of the primary health care?

Alexander Molassiotis: We did try to cross reference things and we tried to look initially with some GP notes, but these were almost incomplete or non-existent, so we gave up on this process. The process of cross matching this information would have been very valuable, but, as I said, we had to abort this part of the plan because information was so limited, or not existing at all. Having said that, Jessica Corner, that I mentioned before, she has published some work with lung cancer, and they did manage to find some information from the GP records and cross match this information with interviews they had, and actually, the reliability of that was quite high.

Hamish Holewa: Hmm, the art of the possible. Could you talk about the need to publish a range of articles from the rich data gained from a larger qualitative study, and how you actually went about practically dividing up those findings into appropriate articles?

Alexander Molassiotis: This study that we published and we are discussing today is part of a larger program of research. So, this program of research is about facing experiences of symptoms, and we tried to have interviews with patients over one year—from the moment of diagnosis until one year of that, whichever it was the quickest period. And we saw them at three months and six months, and twelve months as well, so they have four assessment points. We also included eight different diagnostic groups—so we’re talking about a significant number of patients for a qualitative piece of work, and due to the latitudinal nature of the follow ups, and the number of interviews we had, plus also we involved some care givers with these interviews, that would not be feasible to publish in one paper. And, we had a lot of rich description that led to a number of key things in the study. So the way we tried to do that is we looked at the data, we saw if there were any differences and similarities across the transcripts of the different diagnostic groups, initially without that we’re going to look at key things across all diagnostic groups, but again, we have to abort this plan because we realised that different diagnostic groups had different experiences. There were some similar experiences, but many of them were also very unique experiences within each diagnostic group. So, the decision was made to actually look at interviews based on diagnostic groups, and as I said we had eight different diagnostic groups. Wherever there was repetition or similar things, for example, breast and gynaecological cancer patients, there were quite a few similarities, so we put together all the data for many cancers. The brain cancer group was completely different from anything else, from the other seven diagnostic groups that looked different on its own, it was more about neurological issues, cognitive impairment, things that you don’t see very often in the other groups. And finally, we had calculative data, so we tried to separate the calculative data from the patient because we couldn’t report on the same single paper, since we had a couple of papers coming out with the calculative data. And also, we found a number of things that have been said before in the literature, we decided not to include them at this stage, we wanted new information—interesting and unique information to come out from this program, rather than repeating what other people have done, or said before.

Hamish Holewa: Yes, very interesting. Thank you very much for talk with us today on Research Notes.

Alexander Molassiotis: You’re very welcome.

Podcast Keywords

cancer, symptoms, early detection, delayed diagnosis, primary care

Detecting Cancer Earlier: The Need for New Strategies and Interventions for GPs and Primary Carers

2011-06-13T17:42:00.000-07:00

Interviewee

Dr Alexander Molassiotis, Professor of Cancer and Supportive Care, School of Nursing, Midwifery & Social Work, University of Manchester, UK

Article

Summary

Cancer patients are more likely to survive if their cancer is diagnosed and treated early, however cancer is often diagnosed at a late stage for a variety of reasons. Patients may not recognise symptoms that are pain-free, vague in nature, or similar to symptoms from their chronic illnesses. They may be too embarrassed to seek help for symptoms in gynaecological areas, breasts or testes, or fear that they would be unable to cope with a cancer diagnosis and treatment. This week, Hamish Holewa, talks to Dr Alexander Molassiotis, who says there are system factors, in addition to these patient factors, causing delays in diagnosis, and that these may be part of the reason the UK has the lowest lung cancer survival rates in Europe. He says we need to find better ways of differentiating symptoms of cancer from those of ageing and chronic disease, and that GPs should more actively follow up high-risk patients to see whether symptoms have resolved. Alexander also recommends awareness campaigns that focus on the guilt and stigma felt by smokers, the fact that people living a 'healthy lifestyle' can also develop cancer, the positive results of early medical intervention, and 'red flag' symptoms, such as post-menopausal bleeding, blood in faeces and hoarseness of voice.

Transcript

Hamish Holewa: Hi and welcome to IPP-SHR podcasts, I’m Hamish Holewa and for today’s podcast I’m talking to Dr Alexander Molassiotis, Professor of Cancer and Supportive Care, University of Manchester, School of Nursing, Midwifery & Social Work. We are speaking with Alexander about his article and study titled: Mapping patients’ experiences from initial change in health to a cancer diagnosis: a qualitative exploration of patient and system factors mediating this process. Published in the European Journal of Cancer Care and co-authored with others listed on our website. Hi Alexander, thanks for speaking with us today on IPP-SHR Podcasts. Do you want to start today’s podcast by explaining the importance of an early cancer diagnosis, and what is presently known about the reasons for delay in diagnosis?

Alexander Molassiotis: Yes, this is a very important topic. By detecting the cancer early, we can intervene with better treatment or operations when the cancer is more manageable, and that ultimately will lead to better survival in patients.

Hamish Holewa: And the reasons for delay in diagnosis is?

Alexander Molassiotis: Some of the reasons are related to the patients themselves, some others to the system, and particularly coming from the UK, we have quite a few health care system related reasons and we show some of the worst possible survival rates in Europe. If we focus more on the patient reasons, probably patients feel, sometimes, embarrassment especially when some systems develop in more, let’s say, private areas, for example, gynaecological cancer, the breast, the testicles, and so on. They don’t go to the doctors until they actually have significant problems, and at that point, patients are quite late with the symptoms. Most of the patients probably underestimate how serious their problem is, and many of them also are trying to self-manage problems before going to the doctor—they try, one, two, three, different things that they know that they may work, eventually they don’t work, problems are increasing and then they go to the doctors. It’s mostly around issues of recognition and interpretation of the symptoms, and fear of what might happen next.

Hamish Holewa: Yes, interesting. And so, what recommendations do you propose to advance the early diagnosis of cancer?

Alexander Molassiotis: Yeah. A number of things can be said and are implied within our interviews and our data: one of them is there is a very urgent need to refocus the attention in public awareness around cancer symptoms—what we call the red flag symptoms. If we look, however, on TV or in the media, we can see only about smoking, and this is one of the key reasons, but it’s not the only one. What again about things like post-menopausal bleeding or some blood in the faeces, or some hoarseness in the voice. These are the other symptoms that are probably a little bit forgotten or taken in second place in these public health messages, and I think it is very important for us to refocus our attention and invest, also, in raising some public awareness for the wider range of the red flag symptoms.
Hamish Holewa: Yes.

Alexander Molassiotis: We also need to highlight in these messages some positive information about early detection. Many patients may think of cancer, but they are too scared to go there just in case they’re going to be given this diagnosis, because cancer is associated with death. And, I think the messages need to be more positive around how important is the early diagnosis; how many things we can do with that if we detect the cancers very early. Many of the patients that are diagnosed with cancer are also elderly patients, and they have a number of other chronic illnesses and co-morbidities, which complicate the process of diagnosis. So, we need to have a better way of assessing these patients, with chronic illnesses, and find a way to differentiate symptoms that are part of the chronic co-morbidity. Another thing, we have suggested that there is a clear need for reinforcing the cues towards the patients—both, in terms of improving the re-attendance, if symptoms do not resolve soon, and in terms of increasing the knowledge, and understanding the risk, and this particularly in patients that we know that they are at an increased risk of cancer—for example, chronic smokers with symptoms—we need to be able to actually bring them back and follow up the duration if symptoms are not resolving. We focused quite a lot on lung cancer, because the most dramatic data we had was particularly from the lung cancer group, which also in the UK has the lowest survival rate in the world. At the moment, the guidelines are written in a way that favours later referral, particularly the lung cancer group, also, has a lot of guilt feelings and there is a social stigma, because the vast majority of these patients are smoking. So, we need to actually need to deliver some different messages that will include our understanding that guilt feelings and social stigma do prevent people from coming to their GPs, and look at health promotions efforts in this area in a different way. The majority of reasons for not coming to the hospital are patient related, but we’re focusing on primary care because this is more amenable to interventions than the public. So the effort should be directly towards educational interventions to improve the primary health care professional’s ability and skills in detecting the cancer.

Hamish Holewa: And, is there any other systematic factors that delay diagnosis?

Alexander Molassiotis: There are differences between the different diagnostic groups: some are having a very speedy process, and they go very quickly to the hospital or the testing centre and they are diagnosed fairly quickly. Some others are delaying. Again the nature of the symptom is important here—when we have vague symptoms, probably this will lead to longer system delays. And I will give you a couple of examples: if it was a symptom, let's say a lump in the breast, that was looked at very carefully, very quickly; was sent to the referral centre within days, and within twenty-four hours they had a biopsy and results. However, when it was coming to more vague symptoms: for example, like abdominal pain, a little bit of diarrhoea; some headaches and so on, these typically were delayed for months; and if you look in the paper, we tried to actually numerical put together, from what the patients told us, how long it took from the moment they had the first symptoms, until they were actually diagnosed, and the gastrointestinal group and the lung cancer group, it was many many months—the G.I. group, for example, was around thirty-seven weeks, whereas lung was about twenty weeks. The vagueness of the symptoms that would make the difference. And also, we had an interesting thing with the brain cancer patients: they all came with some neurological problems to the GP, and they were all referred very quickly, but to a stroke unit, and so every single patient we had from the brain group, the GPs thought they had a stroke, and based on the guidelines, they had to refer them to the stroke hospital and they had an MRI in the next couple of days, which the MRI showed actually they had a brain tumour. So that was a complete mistake, not serious, but in hindsight it was a great thing to send them to a stroke unit because the guidelines suggested they had to have an MRI and then they were diagnosed very quickly with that.

Hamish Holewa: Right, an ironic twist of luck.

Alexander Molassiotis: Indeed, yes. The only thing I would like to add is the key message from this study and for your audience: the prime objective is not so much how to make people recognise the potential significance of their symptoms at an earlier stage, but rather how can G.P's and health professionals can objectively distinguish the majority of the symptomatic patients with non-malignant illnesses from the small minority, with cancer, presenting with the same symptoms, and that will be very tricky without testing some new interventions, particularly focusing on the primary care and rethinking again some of the key messages that we propose out of health promotion campaigns. A number of patients talked to us about being healthy, in inverted commas, having a healthy lifestyle, and they never associated that with cancer, and I think we are missing something that we are saying to everybody, eat lots of vegetables, have exercise, don’t smoke, and so on, and people assume that if they do all of this they are not going to be at risk of cancer—this is the wrong message, and I think we have to change that, and we need to look at messages that talk about the potential risk, and that might be genetic, might be work related, might be environmental. So, we need to refocus some of the messages. So, the key thing is: a) How primary care and GPs will be able to detect cancer earlier and develop some interventions and strategies to do that, and the second bit, refocus the health promotion messages about early detection and early diagnosis of cancer.

Hamish Holewa: Hmm, an important message. Well, thank you for sharing that information with us today on IPP-SHR Podcasts. It’s been a pleasure.
Alexander Molassiotis: Thank you very much.

Podcast Keywords

cancer, symptoms, early detection, delayed diagnosis, primary care

Research Notes: Tourette's Syndrome: Understanding the Impact of Diagnosis on Children, Families and Caregivers

2011-06-13T17:40:00.000-07:00

Interviewee

Dr Jesus Rivera Navarro, Professor in the Faculty of Social Sciences, University of Salamanca, Spain

Article

Rivera Navarro, J., Cubo E., Almazan, J. (2009) The Diagnosis of Tourette's Syndrome: Communication and Impact., Clinical Child Psychology and Psychiatry 14(1):13-23.

Summary

Dr Jesus Rivera Navarro describes the qualitative descriptive methodology he used to understand the impact of a diagnosis of Tourette's syndrome on doctors, patients and their families. He talks about the dynamics of the three study focus groups, explaining that, both, the group of physicians, and the group of relatives, spoke freely during focus groups sessions, whereas many of the children with Tourette's syndrome had difficulty speaking about their problems. He also describes the analysis technique used, based on Grounded Theory, which involved line by line coding, followed by paragraph by paragraph coding, and finally axial coding to reveal the structure among categories and to describe the process of actions or events.

Transcript

Michael Bouwman: I’m Michael Bouwman and in Podcast number 106, I interviewed Dr Jesus Rivera Navarro about his paper: The diagnosis of Tourette’s syndrome – Communications and impact. I asked him if he could explain the term, qualitative description, and why he chose this method for his study.

Jesus Rivera Navarro: Qualitative description studies have a comprehensive summary of events. Qualitative descriptive study is the method of choice when a straightforward description of phenomena is desired. This method was adequate to understand the different opinions regarding the diagnosis of Tourette’s syndrome and its impact on doctors, patients and their families. At the moment of writing, we wanted to contrast the opinions of these three groups, and qualitative description was the best method.

Michael Bouwman: And you used focus groups as a method of data collection for the three different participant groups in your study. Were there different benefits and difficulties with this approach, depending on the participant group?

Jesus Rivera Navarro: In the physician focus group, development of the discussion in the focus group was very easy. Between them, sometimes, there were disagreements, but they spoke sincerely, telling their experience with patients, with Tourette’s syndrome, in the relatives. With relatives of Tourette’s syndrome patients, the coordination of the focus groups was easy too: they spoke fluently about the main problems with their children; they even criticised the actions of doctors and health professionals. In the case of children with Tourette’s syndrome, the duration of the focus groups was more difficult, because some of the participants of these groups were very young—between eleven- and 17-years old, and they had more difficulty in speaking fully about their problems. The other patients discussed more aggressively about the diagnosis of Tourette’s syndrome and the relationship with their doctors.

Michael Bouwman: And, your method of analysis was based on Grounded Theory. I wondered if you could explain to our listeners what was involved in this process of analysis.

Jesus Rivera Navarro: Of course. The main contradiction of Grounded Theory in our analysis was the way of coding: line by line coding was followed by paragraph by paragraph coding, when the transcript did not reveal any dimension. Finally, axial coding was used to code the data. The aim of this coding technique is to reveal the structure among categories and to describe the process of actions or events. Thus, categories and relevant subcategories were identified along with a core category or emerging storyline. Three big categories were identified: difficulties to diagnosing Tourette’s syndrome; the impact of the diagnosis on the person with Tourette’s syndrome and their families, and communication of the diagnosis of the Tourette’s syndrome. Every one of these dimensions had other subcategories too. The analysis was coded in terms of differences of perception between people with Tourette’s syndrome, their relatives and physicians.

Michael Bouwman: Very good. Well, thank you very much for speaking with us about the methodology of your research.

Jesus Rivera Navarro: Thank you very much.

Podcast Keywords

communication, diagnosis, focus groups, Tourette's Syndrome

Tourette's Syndrome: Understanding the Impact of Diagnosis on Children, Families and Caregivers

2011-06-13T17:38:00.000-07:00

Interviewee

Dr Jesus Rivera Navarro, Professor in the Faculty of Social Sciences, University of Salamanca, Spain

Article

Rivera Navarro, J., Cubo E., Almazan, J. (2009) The Diagnosis of Tourette's Syndrome: Communication and Impact., Clinical Child Psychology and Psychiatry 14(1):13-23.

Summary

Children with Tourette's Syndrome (TS) experience symptoms such as eye blinking, grimacing, coughing, and throat clearing. They have lower levels of self confidence and greater social anxiety than those in the general population, and are often stigmatised due to the nature of their symptoms, lack of knowledge about TS in the community, the fact that their illness is inherited, and because TS is seen as a psychiatric condition. This week, Michael Bouwman talks with Dr Jesus Rivera Navarro, who studied the impact of a TS diagnosis on patients and their families, and found that rejection and lack of comprehension about the diagnosis by teachers, classmates and relatives, had a particularly negative impact. He also found that families experienced significant anxiety because they could not clearly interpret the language clinicians used when communicating the diagnosis. Jesus believes that TS diagnosis communication should be improved so that patients and their relatives are informed clearly and unambiguously in a suitable setting, using language that is psychologically sensitive, with enough time for discussion, and continuity of attention from beginning to end. He also recommends education programs for teachers and other education professionals, and peer support for caregivers and relatives of people with Tourette's syndrome, in order to avoid conflicts and denial of the diagnosis.

Transcript

Michael Bouwman: I’m Michael Bouwman and today I’m introducing Dr Jesus Rivera Navarro, Professor in the Faculty of Social Sciences, University of Salamanca, Spain. I am speaking with Jesus about his study and article: The Diagnosis of Tourette’s Syndrome: Communication and Impact. Published in Clinical Child Psychology and Psychiatry and co-authored with others listed on our website. Welcome. Could you start by explaining to our listeners what Tourette’s syndrome is and what we know about this condition?

Jesus Rivera Navarro: Tourette’s syndrome is a childhood onset, inherited neuro-developmental disorder, characterised by the presence of multiple motor tics, as well as one or more vocal tics, lasting longer than a year. There are a lot of symptoms related to tics: eye blinking, grimacing, coughing, throat clearing. These symptoms may persist throughout life. Tourette’s syndrome is often associated with other disease, such as, obsessive compulsive disorder, attention deficit hyperactivity disorder. Many studies show how Tourette’s syndrome impacts on the daily life of patients. Patients with Tourette’s syndrome report learning difficulties and behavioural problems. Patients with Tourette’s syndrome were found to have lower levels of self confidence and higher social anxiety than those in the general population.

Michael Bouwman: You also highlighted the impact on the person of a diagnosis of Tourette’s syndrome. Could you discuss that impact?

Jesus Rivera Navarro: Physicians thought that impact of the diagnosis in children was related to the importance that families gave to the tics, because, according to the doctors, children with Tourette’s syndrome normally had a good tolerance for tics and other symptoms. People with Tourette’s syndrome thought that the impact of diagnosis was related to the behaviour of their teachers, classmates and relatives. When these individuals expressed rejection or a complete lack of comprehension regarding Tourette’s syndrome, the impact was negative. For relatives of patients with Tourette’s syndrome, the impact of diagnosis on children can become a source of great anxiety because of poor interpretations of the clinical language used by doctors, as well as the stigma that stems from the categorisation of Tourette’s syndrome as a psychiatric disease.

Michael Bouwman: Yes. Your findings explored factors associated with communicating a diagnosis of Tourette’s syndrome. Could you elaborate on these findings?

Jesus Rivera Navarro: There are two important factors which make it more difficult to communicate the diagnosis of Tourette’s syndrome: firstly, the denial of diagnosis in the family—many times families denied any connection between the children’s symptom and Tourette’s syndrome. That was because members of the family suspected the Tourette’s syndrome was a genetic issue and preferred to avoid it. This dismissal makes it difficult to diagnose Tourette’s syndrome, it can cause marital conflicts due to arguments regarding the origin of Tourette’s syndrome.

Michael Bouwman: Whether it’s from the father or the mother’s side of the family.

Jesus Rivera Navarro: And secondly, the stigma surrounding the identification of Tourette’s syndrome as a mental disorder affected not only the Tourette’s syndrome patients themselves, but also the relatives: for example, in one case of our focus groups, a patient had accused the family of maltreatment, and the physician had asked for a social worker without considering aggressiveness as a symptom of Tourette’s syndrome.

Michael Bouwman: Ok, and finally, what do you think are the practical implications of your study?

Jesus Rivera Navarro: This study justifies some recommendations, for instance, improving the communication of diagnosis of Tourette’s syndrome is necessary for good treatment, besides it could make it necessary to implement education programs, to explain to teachers and all the other education professionals what is Tourette’s syndrome and what are its symptoms, and provide peer support to care givers and relatives of people and children with Tourette’s syndrome, in order to avoid conflicts and denial of the diagnosis.

Michael Bouwman: Thank you very much for giving us your time.

Jesus Rivera Navarro: Good night. Thank you very much.

Podcast Keywords

communication, diagnosis, focus groups, Tourette's Syndrome

Research Notes: Post-Natal Cultural Practices in Ethiopia: Protective or Destructive To Mental Health?

2011-06-13T17:34:00.000-07:00

Interviewee

Dr Charlotte Hanlon, Associate Professor, Department of Psychiatry, Addis Ababa University, Ethiopia, and Honorary Research Fellow, Institute of Psychiatry, Kings College, London, UK

Article

Hanlon, C., Whitley, R., Wondimagegn, D., Alem, A., Princea, M. (2009) Postnatal mental distress in relation to the sociocultural practices of childbirth: An exploratory qualitative study from Ethiopia, Social Science & Medicine, 69(8): 1211-1219

Summary

Research Notes is a complementary podcast which explores the practicalities, issues and methodology associated with conducting psycho-social health research. Dr Charlotte Hanlon talks about her experience as an English psychiatrist conducting focus groups and in-depth interviews in rural Ethiopia. She shares the insights she gained through working with local interpreters and research assistants, using third party interviewers and dealing with the challenges posed by cultural and language differences and transportation difficulties. Charlotte describes the use of 'key informants' and 'snowballing' strategies as a method of participant recruitment, and describes her approaches to data analysis and securing funding.

Transcript

Hamish Holewa: Hi, I’m Hamish Holewa and welcome to the first Research Notes. Research Notes is a podcast which complements the content of our normal podcasts. We hope to explore the methodologies, practicalities and issues associated with conducting psycho-social health research. Our hope is it will give you an insight into the nitty gritty of research and show the decision making, processes and compromises that inevitably happen when conducting research. In the near future we hope to make Research Notes more interactive and engaging for our listeners; yourself and allow you to post questions and suggest content for upcoming podcasts but for this first issue of Research Notes we are talking with Dr. Charlotte Hanlon, Associate Professor in the Department of Psychiatry, Faculty of Medicine, Addis Ababa University, Ethiopia, who in podcast #105 spoke about her research looking at post-natal distress in relation to socio-cultural practices of childbirth in Ethiopia. Starting this Research Notes podcast I asked Charlotte about the practicalities and challenges involved in doing research in a rural setting in Ethiopia

Charlotte Hanlon: An English psychiatrist going into a rural Ethiopian setting, you’re going to encounter a number of difficulties that you wouldn’t face conducting research in a western setting. There were some things that were all about practicalities, getting transported to different places, arranging appointments, it was always quite haphazard and people would just turn up and it wouldn’t be when we expected them but that was fine, so a lot of flexibility was required and we had to be quite flexible about where we saw people. We had chickens pecking at our tape recorder obscuring the noise and then the wind obscuring all the voices, these kind of things were sort of teething problems which we were able to overcome. Perhaps one of the more important problems is really me coming in from outside, not being fluent in Amharic and not being able to be sort of totally in control of data collection, so working through an Ethiopian mid-wife who was our research assistant and who was conducting the interviews directly. They sound like you can skip over them as small things but there were challenges that we had to face

Hamish Holewa: And how did you manage the iterative component of qualitative interviewing when you were using a third party for interviewing, in this case your research assistant, the Ethiopian mid-wife?

Charlotte Hanlon: We wanted there to be a flow of the interview and in a way we wanted my presence to sort of fade into the background

Hamish Holewa: Absolutely, yes to remove any cultural intimidation or bias

Charlotte Hanlon: But in order to do that I had to work very closely so we spoke a lot about what we wanted to try and get from interviews and at the end she would sort of summarise and I would add some bits and we would go back and forth a little bit more at the end just to clarify. That’s obviously much more difficult than if you conducted the interviews yourself but we felt it was perhaps better than just translating each question one at a time, waiting and losing the flow of the interview

Hamish Holewa: And how did you actually develop the probe questions and what role did they actually have in that whole research process?

Charlotte Hanlon: We started out with a very loose interview guide which was really sort of trying to prompt people to speak about what happens in pregnancy and childbirth and the post-natal period and for this paper we sort of focused on what people told us about the post-natal period. We were aware that people might not spontaneously talk about supernatural issues, we very much tried to encourage people in that direction without leading them but if they didn’t spontaneously mention those issues we had a set of planned probe questions and they came from some of the experience of one of the authors, Dr. Atalay Alem is a Senior Psychiatric Epidemiologist in Ethiopia. He’s done a lot of work in Butajira about mental distress outside of the perinatal period and so he’s done a lot of work on explanatory models, speaking with key informants and really very commonly issues about evil eye and bewitchment, ancestral troubles, spiritual possession come up. We try to keep as open as possible at the beginning but we knew that there was potentially some valuable data around supernatural etiology because of the taboos about discussing that we thought we might have to directly ask

Hamish Holewa: And did you wait until the end of interviewing or the end of data collection for analysis to begin or did this occur throughout data collection? Do you want to just focus on that topic a little bit?

Charlotte Hanlon: After each interview we would be thinking about, well what, was this what we expected, what was surprising, was anything emphasised, anything avoided? And we sort of tried to think about what was coming out of the data and on that basis we were modifying some of the questions and the order of the questions that we were asking. And then of course there’s the whole process of a transcription and translation which in itself does bring a sort of analysis of the data, we just tried to follow a sort of grounded theory approach. Our questions were not directive and too structured, the answers were quite free ranging and we were able to sort of start with descriptive codes and then build those up into groups that seemed to represent higher order themes and then we would check those against different data and we did that before we finished data collection and then we actually did a few more interviews to try and test out some of these theories. We immersed ourselves in the data and then tried to take a step back at some point and then just say, well is that really representative of what people were saying?

Hamish Holewa: And one important aspect of conducting research is to be able to actually access participants. In your article you mentioned that you used a key informant and the snowballing enrolment procedure. Do you just want to talk a little bit about that process?

Charlotte Hanlon: We’re fortunate to be able to make use of a key informant who lived in the area all of her life, was well known but worked in the base and so had a lot of experience going around and visiting the field sites and when the base was being set up a lot of work was done with community leaders and so the workers in the base have a very good sense of people in the community who would be able to be good informants. So she gave us our initial way in which was really very important, it gave us a legitimacy I think with other participants and also enabled us to access people who we may not of been able to find, particularly for example, the traditional healer [there’s] not always a willingness to come forward for such interviews. Potentially there are some limitations, obviously we don’t know how that key informant is particularly received within the community although there weren’t any obvious difficulties but that is one of the limitations that you would face and you asked about snowballing. We did this as we were going along, so we asked whether there was anybody else that we should speak to about this topic, we were directed to some people who we had not originally planned to interview. Specifically we were looking really to try and identify women who were recognised within the community as having a perinatal distress state and then we tried to locate those women and we identified three women on that basis so they were identified some within the community that greatly enriched things

Hamish Holewa: And did you feel using a local person with the snowballing enrolment established trust and rapport amongst your participants?

Charlotte Hanlon: I think the research assistant was excellent and she had a lot of experience doing qualitative work in Butajira. She was a mid-wife by training although didn’t disclose that so much during the interviews. The sort of circumstances where we were interviewing people it was easy for them to move away if they wanted to or terminate the interview. The two women with wuqabi - which is this sort of ancestral spiritual possession, they both seemed quite interested to talk about their conditions. Actually, they self-identified themselves with our vignettes, of kind of a western style post-natal depression; so they seemed to be kind of more up for thinking about themselves in those terms, which was a bit of a contrast to, for example, the woman who described all the features of post-natal depression that I would recognise as a psychiatrist from the west but didn’t self-identify herself as having a kind of an illness in that sense. And if anybody was felt to need treatment that was a part of the deal but we didn’t end up having to refer anybody

Hamish Holewa: Okay, yep fantastic and you used the Butajira Rural Health Program, do you want to just talk about how you used that program, how it helped and facilitated the study?

Charlotte Hanlon: The Butajira Rural Health Program was very important in supporting us on the ground and this is a program that’s been up and running since 1985. The Butajira area was selected to set up a demographic surveillance site which means that there’s a geographical area which has a population of about forty-thousand people who are visited on about three monthly basis to determine births, deaths, migration and really to be able to quantify the population because otherwise there’s no routine registration of these events and so it’s always very difficult to know how many people are living in an area. So we benefitted from their infrastructure in terms of the way in to get introduced to people within the base. It’s a great resource really these demographic surveillance sites across a number of low income countries now and the Butajira one is part of the in-depth networks. There’s a website about all these different demographic surveillance sites and what they achieve

Hamish Holewa: Okay then so the Butajira Rural Health Program is international then or is it just in Ethiopia?

Charlotte Hanlon: It’s just in Ethiopia but it’s part of an international linking of demographic surveillance sites in different low income countries

Hamish Holewa: And finally, do you want to talk about the practical challenges associated with running five focus groups and did you see any difference between data gathered from the focus groups compared to the in-depth interviews?

Charlotte Hanlon: The focus groups were more of a challenge because you’ve obviously got to get more people in the right place at the right time and find a place to hold them. Also there was sort of a cultural challenge because sort of norms of social behaviour so for example, we had one group of the traditional birth attendants where there was quite a spectrum of ages and experience which is not really what you were advised to do within a focus group setting but it was a bit unavoidable for our purposes but the consequence of that was the older women are very much revered and so when they start to talk nobody’s going to interrupt them and nobody’s going to contradict them and they’ll start and they’ll carry on and tell a whole full story. It was a bit of a challenge particularly in that group to get people sort of interacting as a group rather than it being like a series of interviews. We did find some interesting differences within the groups, so the father’s focus group, they were much more forthcoming about issues related to supernatural attributions for disturbance whereas, often when we were talking to particularly rural women, they were very reluctant to acknowledge these issues which we kind of know are prevalent beliefs within the community. Definitely there are challenges to focus groups, we did get really rich data and I think it did complement the in-depth interviews, to some extent it helped triangulate the data. You can test things out and get a few opinions and perhaps in the father’s focus group it worked best because people were willing to chip in and sort of contradict one another

Hamish Holewa: Right, get a bit of discussion

Charlotte Hanlon: Exactly, it seems that people very much enjoyed the focus group so they had quite a buzz to them

Hamish Holewa: Yeah fantastic. I think that anybody who has done qualitative research would fully understand what you were saying there so thank you for sharing those insights with us today on Research Notes

Charlotte Hanlon: Thank you very much indeed

Podcast Keywords

Ethiopia, Sub-Saharan Africa, post-natal depression, childbirth, gender, post-natal period

Post-Natal Cultural Practices in Ethiopia: Protective or Destructive To Mental Health?

2011-06-13T17:27:00.000-07:00

Interviewee

Dr Charlotte Hanlon, Associate Professor, Department of Psychiatry, Addis Ababa University, Ethiopia, and Honorary Research Fellow, Institute of Psychiatry, Kings College, London, UK

Article

Summary

In many cultures women are supported by their communities after giving birth, while they have a period of rest, social-seclusion and recognition of their newly acquired status as a mother. Research is divided on the implications of this 'socio-cultural patterning', but indicates that it might protect women from developing post-natal depression, and the lack of this supported rest period in the resource rich countries, where there is a more biomedical approach to childbirth, might contribute to the higher rates of post-natal depression in such countries. This week, Hamish Holewa talks with Dr Charlotte Hanlon, who interviewed women in Ethiopia about their post-natal experiences. She discovered that while the elaborate post birth rituals and support period, which included gift-giving and the celebration of a successful delivery, could be protective, it also raised expectations, and for women who were unable to achieve the ideal experience, these expectations led to significant mental distress. Dr Hanlon says that many women are excluded from the practices due to being at the limits of survival due to poverty, ill health and marital difficulties, including domestic violence. For these women, the period of seclusion prevented them from participating in the cash economy, limited their contact with friends, and meant that domestic violence remained hidden, which actually exacerbated their pre-existing levels of distress.

Transcript

Hamish Holewa: This is IPP-SHR Podcasts and I’m Hamish Holewa. For today’s podcast I’m speaking with Dr Charlotte Hanlon, Associate Professor in the Department of Psychiatry, Faculty of Medicine, Addis Ababa University, Ethiopia, an Honorary Research Fellow in the Institute of Psychiatry, King’s College London, UK. We’re speaking with Charlotte today about her study and article titled, ‘Postnatal mental distress in relation to the sociocultural practices of childbirth: An exploratory qualitative study from Ethiopia’, published in Social Science and Medicine and co-authored with others listed on our website. Welcome Charlotte, thanks for speaking with us today.

Charlotte Hanlon: Thank you very much—it’s very nice that you’re taking an interest in our study.

Hamish Holewa: Do you want to start the podcast by briefly explaining the notion of social cultural patterning and the evidence that, during the postnatal period, it can protect against depression?

Charlotte Hanlon: Stern and Kruckman identified that there was some key, sort of, commonalities like protective measures for the new postnatal woman, social seclusion, a period of mandated rest, increased support and recognition of her new status as a mother. So in 1983, Stern and Kruckman made this hypothesis that these kind of elements, these sociocultural patterning of the postnatal period, could be important at protecting women against postnatal depression; and there was also the idea that in the West, where we perhaps moved towards a more, sort of, biomedical picture of childbirth, that some of these practices are relatively neglected, and therefore, that’s why postnatal depression might be more common here. There’s a bit of uncertainty in the literature about whether there actually is a relationship between these patterning behaviours and development of postnatal depression.

Hamish Holewa: Right. One of the first themes identified by your research is that of disappointed expectations and exclusion. Do you want to talk about those findings further?

Charlotte Hanlon: The purpose of conducting the qualitative research was to acquaint ourselves with all the different rituals and behaviours that were associated with the postnatal period, particularly in Ethiopia, and one of the striking findings was just how prominent and elaborated those rituals were. However, for example, in Butajira, the postnatal period is seen as a very good time in the woman’s life: there are lots of things, such as, she receives gifts and there are ceremonies that celebrate the successful delivery, special foods that build her up, and things like that. So, that kind of supports the idea that cultural elaboration is protective in the setting, but it also raises a set of expectations, and a lot of the participants in our study spoke about how women could be disappointed. So, for various reasons, but mostly because of poverty, or because of marital difficulties, a woman could be excluded from these practices, and because they happen to be so important and so very much valued within the culture, those women could be at particular danger of developing mental distress states. And so, this is actually quite drawn out, the parallel with Dressler's concepts of cultural dissonance, which is also about the idea that if somebody is unable to carry out a belief, or an action, that is very much valued within the culture, that this causes a psychological dissonance that can cause psychological difficulties, and so that was one of the hypothesis that came out of our study: that although maybe the cultural patterning could be protective for women, the very fact that it was held in such high esteem meant that those who, sort of, fell through the net, those who were unable to participate, could be particularly at potent risk.

Hamish Holewa: Right, and your next theme, though, related to exacerbating pre-existing problems. Do you want to elaborate on that theme?

Charlotte Hanlon: Yeah, this was a thing that came up again and again. People talked about how for some women, the postnatal period could be a burdensome time and could just make the pre-existing difficulties worse. Particularly, I think they were referring to being at the limit of survival with respect to poverty but also ill health and marital difficulties, and part of the reason for this, that came out of the discussions, was that the period of confinement means that the woman is very much kept to her home, and so some of the activities she would’ve engaged in beforehand which might of made life easier for her, so being able to engage in the cash economy, even if it’s a small scale kind of endeavour, or chat informally to her friends. If she doesn’t have enough money to do the rituals and invite people around, she can’t actually leave the house to go out and seek help herself, and so for women with pre-existing difficulties may actually find the period of confinement to make those worse. There were quite a lot of strong quotes that came, we had one woman who was not identified a priority as having mental health problems, she was a postnatal woman, but she talked very candidly about her own postnatal period and how her husband had been beating her but nobody else knew, and it was all hidden away because she had to stay in the home, and just how worthless this made her feel—and even suicidal. So, that’s how we kind of came to the conclusion that this was an important theme that could be related to mental health problems in the woman.

Hamish Holewa: Sure, and do you want to talk about another theme there, vulnerability and danger that you mention in your article?

Charlotte Hanlon: This really came out very much in the discussions about... especially the woman’s spiritual vulnerability, and so many of the practices were directed towards that goal: so keeping her inside away from sunlight, not able to cross the boundary of her home, was all about protection really. What our respondent’s spoke about was how that kind of creates a sort of aura of fear, really, because the woman’s having to be very careful and make sure she carries out these practices in the right way, otherwise, some kind of catastrophe can befall her or her child. There were again, there was spontaneous descriptions of what might happen to a woman who didn’t carry out postnatal practices in the way she should, and mostly, respondents spoke about sort of spiritual attack, of being important in comparison to the other themes, where it’s much more about the socio-economic status and her level of empowerment within the marriage; and they described symptoms that could arise and they seemed more indicative of a sort of severe mental illness, psychotic disorder. Although, especially in our paper, we tried to be quite careful not to sort of overstate how symptoms might map onto western constructs of mental disorder. That seemed to be the more severe disturbance, was being identified by respondents, as being something about spiritual attack and not attending properly to her vulnerability during this critical time.

Hamish Holewa: Right absolutely, thanks for sharing the time with us today and for speaking with us on IPP-SHR Podcasts.

Charlotte Hanlon: Thank you.

Podcast Keywords

Ethiopia, Sub-Saharan Africa, post-natal depression, childbirth, gender, post-natal period

Research Notes: 'Welcome to the Club Nobody Wanted to Join': Humour and Masculinity in Prostate Cancer Support Groups

2011-06-13T17:23:00.000-07:00

Interviewee

Dr John Oliffe, Assistant Professor, School of Nursing, University of British Columbia, Vancouver, Canada.

Article

Oliffe, J., Halpin, M., Ogrodniczuk, J., Bottorff, J. & Hislop, G. (2009) Connection humor, health and masculinities at prostate cancer support groups. Psycho-Oncology, 18: 916-926.

Summary

Dr John Oliffe describes the qualitative ethnographic approaches he used to understand the way men engage with prostate cancer support groups. He says men typically do not acknowledge illness, let alone openly discuss their health concerns with other men, so the support groups seem to run contrary to typical male behaviour. Direct observation of support groups allowed him to observe the role humour played in the groups, enabling men to engage at a level they were comfortable with, at a time in their lives when they were feeling particularly vulnerable. Follow-up interviews with the men and their partners allowed him to contextualise his observations, gain an understanding of how the men came to be involved in the groups, and understand what the men and their partners saw as the benefits of group participation.

Transcript

Michael Bouwman: I’m Michael Bouwman and in podcast number one hundred and four, we interviewed Dr John Oliffe about his paper: Connecting humor, health, and masculinities at prostate cancer support groups. We asked him what he thought were the benefits of using a qualitative approach to his research in exploring this issue.

John Oliffe: A qualitative approach allowed us to observe the groups, so, typically what we did, we had a couple of research assistants, myself included, and we positioned ourselves at the back of the room, and we would observe the interactions of the men at the groups, and then we would also interview men and their partners individually about attending the prostate cancer support groups. So, there’s a kind of, the qualitative approach helped us to, sort of, contextualise some of what we were seeing, to more fully understand and be able to talk to what we were seeing. And, also, talking with the fellows, and or, their partners about, you know, what the benefits were and how they came to be involved in the group. Because, really, when you think about it, they’re really acting in a way that we say men don’t act, so, it was very interesting to be able to do it in a qualitative way. I can’t imagine a survey questionnaire that would have got us the same, sort of, contextual data.

Michael Bouwman: Yes, and did they understand that you were researching humour?

John Oliffe: Actually, one of the reviewer questions was around, you know, did you present yourself as a humour researcher? And, no we didn’t; so, we didn’t come in, sort of, telling jokes and...We came in doing an ethnographic study of looking at these groups, and talking to people who were affiliated with these groups and members of the groups. So, this was very much emergent and I guess it relates, in part, to the qualitative approach. I guess one of the advantages of the qualitative piece is that you can go in and you’re not necessarily looking for humour and then humour emerges as a key piece, and then you start to be able to ask more questions about it, observe it more closely, and write a paper. This was definitely not a paper that we thought was going to feature, and we certainly weren’t going in there looking solely at humour. I think we’ve had five or six publications of this particular research and this was one aspect that you just couldn’t ignore, it was so, kind of, prevalent, in how the guys conducted their business, that we just, sort of ran with it and started, sort of, asking focus questions around as we started to unpack, you know, the interviews and then attending more and more groups, just looking for these subtle pieces around humour.

'Welcome to the Club Nobody Wanted to Join': Humour and Masculinity in Prostate Cancer Support Groups

2011-06-13T17:21:00.000-07:00

Interviewee

Dr John Oliffe, Assistant Professor, School of Nursing, University of British Columbia, Vancouver, Canada.

Article

Oliffe, J., Halpin, M., Ogrodniczuk, J., Bottorff, J. & Hislop, G. (2009) Connection humor, health and masculinities at prostate cancer support groups. Psycho-Oncology, 18: 916-926.

Summary

Men in Canada and Australia tend to monitor their own symptoms and self-medicate, rather than consulting family physicians and GPs, largely due to the belief that to be masculine, they must be stoic, autonomous and self-reliant. How, then, are leaders of prostate cancer support groups able to create an environment where men feel comfortable discussing sensitive topics such as impotence, incontinence and digital rectal examinations? This week, Michael Bouwman talks with Dr John Oliffe, who studied prostate cancer support groups in Canada, and found that group leaders 'disarm stoicism' through humour, which allows participants to engage at a level they are comfortable with, and means that newly diagnosed men experiencing anxiety are able to gain valuable information. He says humourous accounts from group members about their own experiences with treatment side effects, such as incontinence, often lead to discussions about coping strategies and help to normalise the experiences for the entire group. John stresses that although participants tend to be skilled at diverting conversations when needed, and 'marking the boundaries' about what is okay to talk about and what is not, humour can still be used inappropriately. He recommends that prostate cancer support groups develop their own group rules for the use of humour.

Transcript

Michael Bouwman: I’m Michael Bouwman and today I’m introducing Dr. John Oliffe, Associate Professor in the School of Nursing, University of British Columbia, Vancouver, Canada. I’m speaking with John about his study and article, ‘Connecting Humour, Health and Masculinities at Prostate Cancer Support Groups’, published in Psycho-Oncology and co-authored with others listed on our website. Welcome, would you provide our listeners with a background on the literature which indicates that men do not typically engage with self-health or acknowledge illness?

John Oliffe: Yeah I guess there’s a couple of things that are out there that suggest that men arrive in clinical practice less often than women especially when we’re talking about general practitioners or family physicians, so we know that the numbers in Canada and in Australia suggest that guys less often consult a doctor. There’s a few reasons for that, one of the reasons put forward very often is that men’s reproductive health linkages aren’t the same as women’s so you know, women at an earlier age are engaged with healthcare services, have a general practitioner, whereas guys tend not to be perceived as needing that, especially around a biological or reproductive health imperative. Interestingly, if we looked at the emergency room statistics both in Australia and Canada, we’d find that men are over represented in the emergency rooms. Again, we tend to sort of talk about guys as that being an artefact of their occupation but we also know that men tend to self-monitor any illness or any symptoms they may have. Many men self-medicate, discuss the problem with a partner and eventually or albeit reluctantly, consult a doctor. The caveat to that is men arrive in emergency rooms because they tend to wait, have a great deal of pain and then arrive in the emergency rooms seeking acute care

Michael Bouwman: Yes and your study documented a number of things in relation to your work on prostate cancer support groups. Would you elaborate on the notions of disarming stoicism and marking the boundaries?

John Oliffe: Sure, we’ve distilled the findings into themes as typically the case with qualitative research. One of the things that we positioned as disarming stoicism, so if you buy into the notion that men are stoic and autonomous and self-reliant then seeing a bunch of guys in a room talking about prostate cancer and talking about their health kind of disrupts that but it wasn’t like we walked into the room and there was all these guys hugging and crying and cathartic, it was much more – the stoicism was disarmed in a really kind of implicit way. One of the examples would be that men often arrive for the first time at a prostate cancer support group newly diagnosed and you can imagine there’s a lot of stress, lot of potential for anxiety. There would often at the front end of a meeting, there would be an ice breaker; the leader of the group would put a joke forward. One of our favourite ones was a fellow who said, ‘welcome to the first time attendees, welcome to the club that nobody wanted to join’ and it just you know, just gives a little bit of a flavour to sort of settle a few fellas down and make it not quite as arduous to sort of engage. The other thing we found with disarming stoicism which is interesting, when someone makes a joke be it good or bad, be it funny or not, people react and so it kind of engages people at a level where you might not even have to say a whole lot because really their core business is around information. You know you didn’t have to say a whole lot as a new attendee, you could just engage with what was going on around you in really subtle ways.

Michael Bouwman: Yes it’s a rather important moment if they’re turned off the idea of the support group, they won’t come back.

John Oliffe: Absolutely cause you can lose them, you can lose them right there. They come in the door and if it feels like someone’s just joking around and it’s not a legitimate piece then people can be turned off very, very quickly.

Michael Bouwman: So there’s a balancing act between disarming them with humour and making sure that it appears to be a serious support group?

John Oliffe: Yeah, we talked in the paper about marking the boundaries. They could sort of engage with things like impotence and incontinence which are really, really sensitive subjects in your everyday life and they were able to mark the boundaries about what was okay to talk about. I’ll share an example with you, someone was talking about incontinence or introducing the idea of incontinence and this fellow had purchased what’s called a penile clamp and this fellow had had a lot of trouble with incontinence and he’d been passing urine, he was a bit like a tap, bit on and off and in the end he got a metal penile clamp. It was purchased on the internet and what it does, it constricts the urethra so it’s turning off a tap. So he described going on a vacation, going into the airport and going through the metal detector and the metal detector going off and eventually they run that security piece over him, you know that wand and they find the metal is located around his groin area and of course the penny drops for him and of course the group’s in raptures about this but he introduced a very, very complex, sensitive topic around incontinence that then albeit through a joke, broke into a good hour dialogue about what men do to curb some of the incontinence. And the other way the fellas did it was if anything looked like it was getting a bit contentious they were very, very good at breaking any sort of anxiety or tension in the room with a joke because it would buy you a little bit of time to get off a particular train of thought

Michael Bouwman: Reformulating men’s sexuality, you made some findings about that?

John Oliffe: Older men are predisposed to prostate cancer, there’s this notion of declining libido and erectile function as you age. So they’ve got that and then they’ve also got this situation where the majority of the treatments will lead to various degrees of erectile dysfunction. They’re not easy things to talk about, especially amongst a group of strangers and these groups were mixed as well, the majority of them. The people that arrived at prostate cancer support groups that we looked at, about a third of them were women so you can imagine this isn’t an easy conversation to engage. They kind of normalise the erectile dysfunction, an example of that was one of the groups where they asked all of the guys who experienced erectile dysfunction to go to X spot in the room, looked over in the corner of the room and they were all huddled in the corner of the room where the erectile dysfunction, there was no one on the other side of the room. Instead of marginalising and subordinating people, what it did was actually result in this collegial kind of camaraderie, ‘we’re all struck with a similar challenge and problem’ and then that said, they also were very masculine in it in their own way because guys would still you know, share details about sexual fantasies in joking kind of ways about different bits and pieces that were kind of blokey humour if you like but a way of signalling they still had desire. And also one of the calling cards around the groups was the digital rectal examination which is historically been poorly tolerated by men. It was interesting because these guys often had the digital rectal examination as a routine examination, [it] kind of positioned the heterosexual masculinity as having the phobia so it was quite clever in the ways they normalised the things that guys don’t typically do, so erectile dysfunction was okay, digital rectal examination was okay because it’s just part of what you’re going through, it’s part of the journey and probably privileging the cancer as being the major issue.

Michael Bouwman: And you noticed that humour was central to many of the group interactions, would you elaborate on your findings on when humour goes south?

John Oliffe: When humour is misinterpreted it can create some pretty awkward situations and what we suggested in the paper is that you know, it really comes down to having a leader who’s very, very clear and very confident in being able to intercept those sort of situations, i.e. position someone’s testimonial as just that, as a legitimate piece that needs to be listened to and fed into. And we also sort of suggested an idea that maybe some group rules around how humour might actually be used just to avoid that potential.

Michael Bouwman: And typically the prostate cancer support group leaders are people who have experienced prostate cancer, they’ve heard all the stories.

John Oliffe: Yeah and that’s a good point too, the groups that we went to, the fellows that run these groups, they’re volunteer-based, they are prostate cancer survivors and I think it’s really important because they have the ability to make a joke because they’re in the same boat in many ways. It’s very different to someone standing up there and making a joke and not actually having this life experience and then of course it’s self-effacing humour though, I think that’s actually a key point to how this humour kind of emerges within this group, yeah

Michael Bouwman: Well fantastic, many thanks John for speaking with IPP-SHR on this important area

Podcast Keywords

support groups, prostate cancer, men's health

Research Notes:'We're not all just Beads and Feathers': Helping Aboriginal Women with Breast Cancer to Connect and find Culturally Appropriate Support

2011-06-13T17:19:00.000-07:00

Interviewee

Dr Jennifer Poudrier, Associate Professor, Department of Sociology, University of Saskatchewan, Saskatoon, Canada

Article

Poudrier, J., Thomas Mac-Lean, R. (2009) 'We've fallen into the cracks': Aboriginal women's experiences with breast cancer through photovoice, Nursing Inquiry, 16(4): 306-317

Summary

Dr Jennifer Poudrier was told by breast cancer advocates in Saskatchewan, Canada, that it was difficult to engage with Aboriginal women with breast cancer. When she began her research, no Aboriginal breast cancer community existed in Saskatchewan. In this 'Research Notes' podcast, she describes how her 'photovoice' research project led to the establishment of a community, created ongoing opportunities for advocacy, and empowered Aboriginal women participating in the study to communicate their 'lived experience' of breast cancer and to work through psycho-social issues they had been unable to deal with previously. She stresses the importance of gaining help from a prominent Aboriginal elder to attract interest and trust in the study at its outset, and explains that the women in the study had a powerful drive to be 'seen' in their photographs, rather than remain anonymous, and how she had to approach the ethics board to gain approval for this. In this podcast Dr Poudrier gives a detailed description of her four stage research process: 1. Initial interview and instructions to participants on the use of the digital camera. 2. Participants took photographs that described their experiences of breast cancer. 3. Individual interviews with the women, during which they described the themes emerging from the pictures and why they took the pictures. 4. Sharing circle: participants shared their stories, experiences and photographs, and discussed strategies for improving the situation for Aboriginal women. They were then introduced to local policy makers, stakeholders and advocacy groups, to workshop ways of moving their ideas forward.

Transcript

Michael Bouwman: I’m Michael Bouwman and in podcast one-hundred and three, I interviewed Dr Jennifer Poudrier about her paper: 'We've fallen into the cracks': Aboriginal women's experiences with breast cancer through photovoice. I asked her could she describe to our listeners her qualitative methodology and what is involved with photovoice?

Jennifer Poudrier: The photovoice methodology’s really been a wonderful and exciting component of our joint work. Not just from the research point of view, but also from the participating women, in this research of visualising breast cancer. Photovoice was developed by scholars Wang and Burris, in 1997 to better understand the health needs of Chinese villagers. So, it’s a participatory method where researchers work with individuals and communities to, first of all, record and reflect their personal, and community, strengths and concerns; secondly, to promote critical dialogue and knowledge about personal and community issues through group discussions—of photographs, using photographs, and third, to reach policy makers. So, photovoice prioritises participants’ knowledge and pictures as a vital source of expertise, with a view to positive community transformation. So, it’s about using photos to share, and to plan and to change. So, the steps that we followed, and further refined to meet the needs of the women we worked with, we had an initial interview, at this point a chance to really get to know the women, hear their story, talk to them about the project we were planning, and to show them how to use digital cameras. We then simply gave them a digital camera and asked them to take pictures of things that described their experience of breast cancer at any stage. So, essentially, here’s a camera and go out into the world. Each woman, of the twelve women, was then interviewed about her pictures: so they described the themes emerging and why they took the pictures they did, one on one. And then we followed up with a sharing circle—so we got the twelve participating women together, so they shared their pictures, their stories and experiences. They discussed collective strategies for improving situations for Aboriginal women, and then we introduced them to some local policy makers, stakeholders and advocacy groups, to see if there wasn’t ways to move their ideas forward. I think for all of us working in it was really an exhilarating process; the creativity and brilliant insights coming from the women about their experiences and their desire for change through pictures, has been really really powerful. We worked with such strong and intelligent women so, the business of photovoice has been really really interesting and fun.

Michael Bouwman: And over what period of time was that project?

Jennifer Poudrier: Approximately two and a half years, or so.

MB: Right.

Jennifer Poudrier: I also work in other areas of Aboriginal health using photovoice, and the technique does take a considerable amount of time, because it has to ensure that it meets the needs of the participants—so, if their busy, or something happens, we can’t just say, two-weeks, here’s a camera and that’s it. So, we have to really be respectful of the lives of women participating, so, it can take a long time sometimes.

Michael Bouwman: Indeed. How structured is this method to tease out the stories?

Jennifer Poudrier: Yeah. The philosophy of the work that we’re doing with photovoice is that it is somewhat structured, but when it comes to working with people, it becomes structured around the needs of the participants: in that themes are, sort of, coming from the women—we don’t, sort of, come up with them and ask them to respond. So, in some ways, it is unstructured and seems a bit disorganised, unlike other work, but it’s intended to be so that women we work with have a voice in directing the process.

Michael Bouwman: In the recruitment process you talked about an elder who wrote a newspaper article.

Jennifer Poudrier: Right.

Michael Bouwman: Could you talk about that?

Jennifer Poudrier: As part of the process of doing community based research, or decolonised research, it’s important really to include, as much as you can, Indigenous people with Indigenous perspectives, in all aspects of the research, especially from the start. We knew that Aboriginal women weren’t being served by advocacy groups and support groups for reasons we didn’t know, and we also did not have an Aboriginal woman breast cancer community already established, so we knew that there was some work to be done, but we didn’t really know how to engage with people, and in fact, had heard that it was very difficult to do so from breast cancer advocates in the province. So, we enlisted the help of an Aboriginal Métis elder, who had been working previously with the University of Saskatchewan. She’s fairly famous, but wishes to remain anonymous; she work a piece in a local, or Saskatchewan based newspaper called, Eagle Feather News, which described her experience learning about her grandmother’s breast cancer and the process under which she had a double mastectomy without really knowing why. It was a very heart wrenching piece; I think that was the main way in which people came to be interested in the study. And, of course, part of it was the visual images, the use of photography, which was interesting to people, but, primarily I think our work was this, the elder I’m describing, was really an important piece for the whole of the research. So...

Michael Bouwman: A very helpful way to start a project like this.

Jennifer Poudrier: Yeah, and not only, in community based research you’re dealing with an already existing community, or a leadership, and in this case we just, sort of, threw ourselves out there to see who might be interested and we had really no idea what would happen about what we did, we were very very very lucky to enlist the support of this amazing elder.

Michael Bouwman: And what were the benefits of using visual methods for this research?

Jennifer Poudrier: From a research point of view, is that it provides so much more contextual and significant information. So, if we see visual imagery as a form of communication—where a picture is worth a thousand words, and we’ve seen examples of that—then we can move beyond just an analysis, or understanding of text, or writing, and we can analyse the elements of the image, including metaphorical communication, things that just don’t come out of words. So, imagery is a way of telling a story from the perspective of the photographer; two, it’s also about power. Where colonial discourse in health care holds a problematic image of women who are sometimes seen as powerless, disorganised, similar, homogeneous, and extremely traditional, photovoice, through the use of the images, can reverse or disrupt that colonial gaze, by asking women to reveal the world as seen through their eyes, so that, in this sense, the women are authors of the facts. So, visual research with the view to putting the camera in the hands of Aboriginal women is a useful tool for sharpening the focus, and becoming engaged on a different level, in the lived experiences of Aboriginal women. On the other hand, the process of photography for the women in the interviews had its own benefits: many of the women who participated talked about the fact that they really had not had the opportunity to think clearly or talk about their experience of breast cancer, while they were in various forms of treatment or stages, and while taking care of their families and trying to survive; and some of them living in some degree of poverty, they just often hid their fears, would go cry in the bathroom, so as no one could see them; just left their anxieties and pain away from their family members. So, as mothers and grandmothers, they felt that it was really important to stay strong for the family, but this active process of photography, taking photos of experiences, allowed a lot of women to process and to explain a great number of issues that they’d had, that they’d never really dealt with before. Their stories and their lives were very powerful and the process of picture taking and the act of doing something, and talking about it, really seemed to be a benefit to the women. So, I think the use of this technique, not only from the point of view of visual communication, as a very powerful tool to convey meaning, outside of text, but also a really important participatory type of work that allows women to talk about their experience. So, the use of the camera was really significant, as well, in the whole process.

Michael Bouwman: Yes, a very creative experience.

Jennifer Poudrier: I think doing something like that as opposed to filling out a survey or having an interview was a...it allowed more time for creativity and for processing ideas. I think it was quite amazing.

Michael Bouwman: And some of the women wanted to be visible in the photographs?

Jennifer Poudrier: This is true. We had originally proposed, based on what Wang and Burris had suggested that we de-identify the women, or they don’t take pictures of other people or themselves. From an ethical point of view, it is quite tricky, but it turned out—, and we applied for ethics and were approved on ethics in the idea that they would remain anonymous, but we felt such a powerful disagreement from the women, that they did want to be visible, they did want to be seen, they did want to be identified; so we had to return to our ethics board to renavigate that approval, and in fact, the women did identify themselves. The issues of anonymity and visibility are interesting from an ethical point of view, but going with decolonised research and we absolutely had to do our best to ensure that, you know, the women were able to guide that process, and not just us.

Michael Bouwman: I suppose that was unexpected. Did you really know where it was going to head?

Jennifer Poudrier: No we didn’t, at all. As I said, we just were following the, sort of, guidelines as set out by the literature we were reading on photovoice, so we really had no idea, in fact, we gave the women camera’s and indicated that they weren’t supposed to take pictures of people—and here were the ethical guidelines—or themselves, but they just didn’t bother, they wanted to do it their way; and I was quite concerned about the idea of anonymity and ethics, and images lasting a long time, but I think we just had to go with what the women wanted to do.

Michael Bouwman: What became of the images?

Jennifer Poudrier: We have them all stored, all of the images are digitally stored here. All of the women have all of the pictures that they’ve taken—both in digital form and printed. They also have access to the group of pictures for their continued work with the advocacy agencies as well, so that they’re able to use the pictures for their... whatever support documentation that they’d like to produce. In a principal of, I guess we’d call it, OCAP—ownership, control, access and possession of visual data, the women have all of those things. So, they can, as a collective, can do with the pictures what they want.

Michael Bouwman: And, what do you think are the benefits of using a qualitative methodology for your research?

Jennifer Poudrier: Well, in, sort of, simple terms around qualitative methods, they’re really a method that really allow for a story to be told. Letting a story be told is really important when doing research with insensitive topics, topics that are underexplored, and when working with people, or populations, or communities that are relatively marginalised, in this work I’m describing we have all three of these elements. The qualitative methods, combined with other frame works, like decolonising frameworks, that sees participants as experts in their own lives, is crucial. It’s also crucial that we have an ethic of shared partnerships, trust, mutual respect, different ethical protocols, personal integrity, etcetera. So, qualitative research, combined with the, sort of, decolonising method, has been really important to ensure that we’re doing things right and that people are participating as fully as they can be.

Michael Bouwman: Wonderful.

Jennifer Poudrier: There’s so much innovation in qualitative research—people doing plays and dramas and writing poetry as data these days, so there’s lots of exciting things happening. Yeah.

Podcast Keywords

Aboriginal women, breast cancer, photovoice, visuality

'We're not all just Beads and Feathers': Helping Aboriginal Women with Breast Cancer to Connect and find Culturally Appropriate Support

2011-06-13T16:40:00.000-07:00

Interviewee

Dr Jennifer Poudrier, Associate Professor, Department of Sociology, University of Saskatchewan, Saskatoon, Canada

Article

Poudrier, J., Thomas Mac-Lean, R. (2009) 'We've fallen into the cracks': Aboriginal women's experiences with breast cancer through photovoice, Nursing Inquiry, 16(4): 306-317

Summary

Aboriginal women in Canada have much lower breast cancer survival rates than non-Aboriginal women, and the rate of breast cancer in Aboriginal communities is rising. This week, Michael Bouwman talks with Canadian researcher, Dr Jennifer Poudrier about her photo-voice study, which has found that Aboriginal women feel uncomfortable in support groups tailored to the needs of middle class white women, and many women avoid seeking services due to cultural taboos against 'inviting the cancer in' by discussing it, or taboos about discussing body parts. While she stresses the importance of realising that all Aboriginal women are not the same, Jennifer says services should be designed to be culturally appropriate and sensitive to indigenous spirituality. Jennifer recommends employment of 'Aboriginal nurse navigators' to guide people through the complex process of diagnosis, treatment and recovery, and believes it is vital to bring women together to share their experiences, stressing that many of the women in her study had never met another Aboriginal breast cancer survivor.

Transcript

Michael Bouwman: I’m Michael Bouwman and today I’m Introducing Dr Jennifer Poudrier, Assistant Professor in the Department of Sociology, University of Saskatchewan, Saskatoon, Canada. I’m speaking with Jennifer about her study and article: 'We've fallen into the cracks': Aboriginal women's experiences with breast cancer through photovoice. Published in Nursing Inquiry and co-authored with others listed on our website. Welcome. Could you start by providing a background on the situation of Aboriginal women’s health in Canada, and cancer in particular?

Jennifer Poudrier: Thank you very much for inviting me to participate. In the Canadian context and in general terms, Aboriginal women’s health is poor when compared to non-Aboriginal women’s health. For example, Canadian women’s life expectancy is around eighty-two years old, while Aboriginal women’s is around seventy-five years old, and even some recent statistics coming out of Saskatchewan show that the health disparity for Aboriginal women are comparable to some of those you see in developing nations. So, as it relates specifically to the breast cancer literature, Aboriginal women have slightly higher diagnosis rates. Although Aboriginal women and non- Aboriginal women have the same rates, Aboriginal women’s are increasing. However, the more compelling problem is that Aboriginal women have much lower survival rates—so in other words, post-diagnosis Aboriginal women are more likely to be sick and less likely to survive, or survive for any length of time. So, obviously then there are very important socio-economic, cultural, historical, economic and experiential factors involved here.

Michael Bouwman: Your paper starts with an important quote from one of your participants. Could you share that statement with our listeners and explain its significance?

Jennifer Poudrier: In the paper we’ve posted a photograph of a picture of an elevator shaft that was taken by Sandra, one of our participants, and about this picture she says, “This is a crack. It actually goes down an elevator shaft ...which is what I felt like was happening to us. We’ve fallen into the cracks, and nobody can really see ... Nobody really cares because they step over us all the time ... You don’t recognize that this is going on. People walk over; get in and out of this elevator every day. But very few people will look in the crack to see what’s down there or look in there.” I think here, Sandra—an amazingly creative funny, energetic woman—uses the image of an elevator shaft to illustrate her frustration with the fact that much of the support for Aboriginal women is not there, that the needs of Aboriginal women are largely invisible. In part her focus was on the experience of racism during various stages of her treatment, but also post-treatment, looking for support groups. Many other women talk about feeling uncomfortable in support groups, which cater to the experiences of middle class white women. Or, they talked about times where they just wanted to see “one more brown face like mine.” In a general sense, I think this quote suggests that breast cancer has been branded a, sort of, middle class white woman’s experience, and Sandra indicates the feeling of being invisible in this general dialogue about who’s important in the breast cancer world.

Michael Bouwman: And your findings refer to the spirituality and Aboriginal identity relating to breast cancer.

Jennifer Poudrier: It’s always safe to suggest right off the hop when we talk about identity and spirituality, that obviously not all Aboriginal women are the same, there is no homogenous group of Aboriginal women. We know that from the words of the women—one woman said, “We’re not all just beads and feathers,” and another woman said, “There’s so many First Nation’s people with different languages and cultures, and while there’re a lot of similarities, there’s some great differences too.” Even in our group of twelve, some women hadn’t been raised with traditional Aboriginal teachings at all, and others were really very much engaged in it. But, I can provide an example here of some of the ideas that the women conveyed around their identity—and I can start with Dorothy: As a woman who was closely connected with Cree spirituality, Dorothy suggested that one of the most difficult aspects of her breast cancer was the loss of her hair. So, according to her father, the cutting off of her hair would signify death of someone, or mourning in the loss of a loved one. So she’d never cut her hair before she had to in chemotherapy. She said: “The only time that people cut their hair is when they lost loved ones, and that’s what I believe today.... When I lost my hair, I cried. I cried. Well, maybe I’m gonna die now.” So, once she began to lose her hair and her braid was cut, her husband smudged the braid and she prayed, so just the braid was something very significant for her from her traditional teaching. Probably, it would be really important for health care practitioners to be aware of this possibility, in our study anyway. A lot of other women also discussed the fact that cancer was hush, hush in their communities. Many women said that by talking about cancer in communities, you would invite the cancer in—another taboo topic. It’s inappropriate to talk about body parts, such as breasts, and there might also be some stigma associated with breast self-exams, so, sort of a tradition of silence around bodies, and certainly around cancer by not inviting it in, was really important to the experience of women, in that they didn’t have any real support, a lot of them felt they had to be quiet about it.

Michael Bouwman: Your study documented a range of insights on the provision of support for Aboriginal women with breast cancer. Could you tell us about that and the practical implications of your study?

Jennifer Poudrier: It seems that one of the most important insights coming from the women was the commitment to improve the experience for other Aboriginal women diagnosed with breast cancer. They’re also concerned for women living in more remote areas to find support and service that was respectful and culturally appropriate, and some remote communities, or any communities, this is in the context where often time’s cancer isn’t spoken about. So, in this regard there were some suggestions and practical outcomes. Now linked to breast cancer agencies in Saskatchewan, some of the women have made posters and pamphlets, and are working on a DVD, which will travel to different communities around the Provence. I’m not sure where this is at, but the hope was that each newly diagnosed Aboriginal woman with breast cancer would get a care package that would indicate all kinds of support specific to her needs. Some of these ideas are to stress the importance of communicating their experiences that may be able to help just one woman from a First Nation’s community who was entirely alienated by the process in a bigger city, in a very complex care context. Another really important suggestion: they really felt strongly that an Aboriginal nurse navigator would be extremely helpful, able to guide newly diagnosed women and men through an incredibly complex process of diagnosis, treatment and recovery, in a way that understood and was sensitive to the needs and lives of Aboriginal people.

Michael Bouwman: Yes.

Jennifer Poudrier: Almost all of them suggest “I would be a support person...I would be available to help anybody who was gonna go through the process.” So, the main things coming out was this extreme interest in helping other people. One of the key things is that we’ve managed to facilitate a sharing of Aboriginal women who experienced breast cancer; and in all of our discussions with them in the sharing circle and interviews, most women talked about never having met another Aboriginal breast cancer survivor, and a lot of these women have connections that are maintained on a personal level, but also through the advocacy agencies. I’ll never forget one woman saying to me, “...you women and this study has changed my life...” and not just because of the study but primarily because of the relationships that she was able to continue after the, sort of, final sharing circle, and also relationships that we continue to have with her. We’ve also assisted in fostering connections between these women, or a group of them—a smaller group of the twelve—and some of the local breast cancer agencies in the Provence, who continue to work together to develop new tools, like a DVD or a care package, etcetera, so the policy or the sort of support work that they’re doing. One of the main things that came out of our VBC study, in terms of listening to the desires of the women, all of the women felt it was really important to reach more Aboriginal women breast cancer survivors, or even simply cancer survivors, not just provincially, but nationally. They knew that they’d had similar experiences with someone perhaps from BC or Halifax, but because of different First Nations, different identities, cultural traditions, some experiences might be entirely different. So, in that regard, along with two participants from the original study as our advisory group, we’ve just completed developing a funding proposal called, A National Picture, and in that what we hope to do is develop a photovoice project in different Canadian regions, based on the ideas of some of the women is to expand the study to understand Aboriginal women across the country. The other practical outcome of this work is that, you know, we really had a change to meet and to get to know and maintain some wonderful relationships with really resilient and brilliant women—I think that’s a pretty practical outcome, in a way.

Michael Bouwman: Yeah and an opportunity for further outreach.

Jennifer Poudrier: Exactly. The relationship building and the process of this kind of work is a fundamental key to its success. The photovoice, you know it’s a tool, but built around it is the really important mutual respect and trust; break up this dualism between researcher and participant when working with Indigenous or Aboriginal communities and just seeing each other as working together. Although, sometimes it takes some time, but it’s certainly worth it when you can maintain the relationship’s like that.

Michael Bouwman: Well, it’s a wonderful technique to listen to First Nation concerns, that’s for sure.

Jennifer Poudrier: Well, thank you very much for the time and for listening, and for being interested.

Podcast Keywords

Aboriginal women, breast cancer, photovoice, visuality

Children Living with Grandparents: An Under-Recognised and Under-Resourced Phenomenon

2011-06-07T21:38:00.000-07:00

Interviewee

Dr Barbara Horner, Director, Centre for Research on Ageing, Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, Western Australia

Article

Downie, JM., Hay, DA., Horner, BJ., Wichmann, H., Hislop, AL. (2010) Children living with their grandparents: resilience and wellbeing,International Journal of Social Welfare, 19(1): 8-22

Summary

The number of grandparents becoming primary carers of their grandchildren is growing in the UK, the USA and Australia, a phenomenon which is both under-recognised and under-resourced. This week, Hamish Holewa talks with Professor Barbara Horner, who has found that while most children's emotional and material wellbeing improves with grandparent care, there are psycho-social risk factors for the children, and financial and environmental stresses for grandparents, that need to be addressed. She says most children cared for primarily by grandparents come from disturbed families where they are at risk. Living with their grandparents gives them a much greater sense of safety and security - feeling that they are needed, loved, and that they belong. However, Barbara also stresses that many children need help with unresolved losses, such as the death of parents and abrupt separations from families through court rulings and crisis situations. She says many children feel confused and anxious about the past because they do not have 'the whole story'. Barbara's research also shows that children have an intuitive understanding of the stresses on their ageing grandparents, who may need to refinance to support the children, and change their own plans for the future.

Transcript

Hamish Holewa: Hi and welcome to IPP-SHR podcasts, I’m Hamish Holewa and for today’s podcast I’m speaking with Professor Barbara Horner, Director, Centre for Research on Ageing, Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, Western Australia. We’re talking with Barbara today about her study and article titled: Children living with their grandparents: resilience and wellbeing. Published in the International Journal of Social Welfare and co-authored with others listed on our website. Hi Barbara, thanks for speaking with us today. Do you want to start this podcast by providing a summary of what is known about the present situation of children living with their grandparents?

Barbara Horner: Yes certainly, I think we all understand that traditionally grandparents have played a fundamental role in families, in terms of support and guidance, and babysitting and assistance, and those sorts of things. However, I think what we’ve underestimated is the number of families in Australia for whom the grandparent becomes the primary parent, or the primary caregiver, for children. We know that we have an increasing number and a different range of family structures, and this is another one of those. Our researcher has indicated, or it’s revealed from the literature, that the data in Australia is not as comprehensive or as well collected as perhaps elsewhere, but our research shows that in the UK, for example, it was a growing percentage of families that became grandparent carers, and also in the US, up to thirty per cent of foster families, or kid-in-care families, are those families that include the grandparent as the primary carer. It’s a growing phenomenon, we’ve certainly increased our awareness over the last five years from when we first started doing research in this area, but it’s still under-recognised and under-resourced.

Hamish Holewa: Right. And your study detailed a number of protective factors for children. Do you want to elaborate on those factors?

Barbara Horner: Yes. When we looked at the data that we’d collected, we identified two primary factors—and the article that you referred to at the beginning goes into this quite a bit of detail. The protective factors were grouped under emotional health and material factors, and the children were able to articulate for us. There were reasons why they felt this was a good arrangement and felt protected by the arrangement, and that’s where we coined the concept of protective factors. So, under emotional health, there were issues around safety and security: emotionally they felt part of a family, they felt wanted and needed, they felt they connected to the family and to the grandparents—that was a sense of safety and security for many of the children. They had come from quite disturbed families, very broken social arrangements, in some cases risk factors. With their grandparents, it gave them a much better sense of safety and security. We also identified a concept of love, caring and belonging, that they felt that they were loved by their grandparents, that they were valued; a sense of emotional health was the extent to which they felt so much more part of this family. There’s the lovely quote in the article, that I refer to here, one of the children said: “It’s different living with...like anyone else lives with their mum and dad, but we live with our Grandma...it’s different stuff...well it’s hard not knowing who your dad is, but it doesn’t really matter coz we all had different dads, but you know, living with my grandma just made me feel so much better.” There were a number of examples with how they identified with that sense of belonging. We also looked at a grouping of factors around family contact, the children identified that it was important to still be part of the larger family—they enjoyed still having contacts with cousins and uncles and aunts, and being part of the Grandma family, or the Grandpa family enabled them to also integrate with the rest of their family. So they were all, sort of, the emotional factors, but there were some very clear material factors—some of these kids had come from environments where they literally didn’t have a room, and sometimes didn’t have a bed—and so they clearly identified the value of being able to have their basic physical needs met, which meant regular food, security of a home, a place to sleep, all of those sort of things that we all take so much for granted. They also talked about a concept we call “being spoilt”: they really related to the fact that the grandparent was, at times, doing extra things for them, because they were kids who had come into their home for different reasons, and they talked about how nice it was to feel at times, that they were being spoilt, that people were making a fuss of them. All of those things we grouped together as protective factors—situations where they helped the children to feel more protected than they had been in the previous relationships that they’d had.

Hamish Holewa: Right. And then on the opposite side, what are the risk factors then for the children?

Barbara Horner: There were, of course, both positive and negative components to the experience—it wasn’t so much the experience was negative, but it was important to recognise that there were still issues that needed to be resolved, and they presented as risk factors for some of these children. So, for example, we talked about past experiences: some of the journeys that these kids had meant that they’d been taken away from their parents rather abruptly, through a court ruling, or through a crisis situation. In some cases they’d never known their mother—their mother may have died, or may be in prison. So, we had to acknowledge that there were situations when there might be unresolved loss that the child needed to be helped to deal with—situations that they may have little memory of, or had been part of their life in the past. They also talked to us about sometimes feeling confused and anxious about the past, not having the whole story, not really knowing where mum or dad had gone, not really understanding what had happened, and it was important to be able to deal with those sorts of issues if this experience was going to, you know, continue to be valuable. That was past experiences that presented a risk to their wellbeing, the other category we looked at under that area were current issues—so things that were happening in their life right now. They were very intuitive when we talked to them about, how did they think their grandparents were coping? A number of the children talked about the fact that they knew it was an extra burden for their grandma or grandpa; they knew that some of them have had to change their lifestyle to be able to look after them; they were worried about their kids, I mean there’s one lovely little quote which says, “My Gran...she’s got arthritis in her thumb and she had a big operation on her back, so now she’s got metal in her back and screws... and sometimes she gets a bit grumpy and she blames it on me, but I don’t mind, coz I know that she really is looking after me...” So, they’re very intuitive to the wellbeing of their grandparents and also a little anxious that, you know, Grandma and Grandpa were so much older, and what was going to happen to them if they weren’t around.

Hamish Holewa: Okay.

Barbara Horner: There were also so some environmental and financial stressors, this is one part of, I guess, previous studies too that reappeared in this, and that is the burden of this role for many grandparents—this is not what they had planned to do with their life. In our previous studies grandparents talked about having to move to different homes because they didn’t have enough bedrooms; have to refinance situations; had to find other resources, environmentally and financially stressful. And the kids knew that, the kids picked up on some of those issues for the grandparents. There was some interesting information around parenting styles—talking about, you know, Grandma’s different, and she raised her kids in a different place; and sometimes a bit around being strict and a bit about being, you know, too many restrictions, and those sorts of things about a different parenting style. But, again the kids understood that that was going on, and were also appreciative that this was what Grandma did, or this was what Grandpa did, and they were doing the best that they could. And lastly, another risk factor towards their overall wellbeing was around stigma and secrecy.

Hamish Holewa: Right.

Barbara Horner: In some cases, they didn’t like to admit that they were living with their grandma, and some of the kids talked about, you know, not telling the kids at school, or not telling the teachers. When someone said, where do you live? They just said, oh you know, I live at home. They didn’t necessarily say, with Grandma. On the other hand, some of the kids said it didn’t worry them at all and they said they lived with their nana, and they were quite comfortable about that. That sort of tension of realising they’re different, you know, little things like one of the kids said, “How do you bring a friend over for a sleep over when it’s your Grandma’s house?” You know just those little subtle differences that we need to be mindful of. When we looked at the data we felt that there were aspects of this relationship that were very protective, but also because of the nature of the relationship and the history of the children, there were also still risk factors.

Hamish Holewa: And what do you think were the benefits of using a qualitative approach to your research?

Barbara Horner: It was very important for us to hear the voices of the children, that was what this particular study was about. Other studies that we’ve done, we’d spent more time talking with the grandparents and also with service providers, and support people in the area. The inclusion of this sort of an exploratory interview process, we felt, was much more suitable for children. We arranged it so that it was an environment that was supportive and not so confronting for them, and the children were able to clearly articulate and discuss how they felt through a number of activities that we did with them. So, it was very much focussed on their voices, and qualitative methodology was the way to go.

Hamish Holewa: ....comes from that, absolutely. Well Barbara, thank you for speaking with us today on IPP-SHR Podcasts on this important topic. It’s been a pleasure.

Barbara Horner: Thanks for the opportunity to talk about it.

Podcast Keywords

grandchildren, grandparents, foster care, relative care, resilience, coping