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IPP-SHR Podcast Please click on the link to access podcast#100

8th Annual 2009 PONZ - Psychosocial Oncology New Zealand Conference

IPP-SHR Podcasts

Published 26 Feb 2010

      

Summary

To commemorate the 100th IPP-SHR Podcast, this week’s podcast is a collection of interviews that were conducted by Michael Bouwman and Hamish Holewa, at the 8th Annual Psychosocial Oncology Conference New Zealand, 2009. Michael Bouwman spoke to Associate Professor David Perez about his paper titled "Putting the patient in the centre of cancer care", looking from a clinician's view of important patient care issues. Michael also spoke to Helen Neser and Gay Dungey about their workshop titled, "Integrating the bunker into mind, body and spirit - A radiation therapy and health professional's perspective". PhD Student Andu Iordache talked to Michael about his presentation "Making the case for using dream talk in cancer care". Michael also talked to Amy Munro about her paper about the online forum, LifeBlood LIVE, which is an forum for haematology patients. Sarah Hunter spoke to Michael about her paper, "The impact of premature menopause and fertility damage from cancer treatment". Anna Holmes discussed her paper, "Bearing witness to suffering - letting go of control". Richard Egan talked about his paper titled, "Spirituality: who cares?". And Hamish Holewa spoke to Susan Comber, a social worker at the Head and Neck Cancer Clinic, Auckland City Hospital

Transcript

Associate Professor David Perez

Michael Bouwman: I’m Michael Bouwman and this is Special Edition Podcast number one-hundred, by the International Program for Psycho-Social Health Research, coming from Dunedin in the South Island of New Zealand.  We are here for the 8th annual Psychosocial Oncology New Zealand Conference, 2009, an annual conference for advancing the understanding of psychological, social, spiritual and ethical aspects of Cancer and its treatments. I spoke with Associate Professor David Perez, Faculty of Medicine, University of Otago, a keynote speaker at the Conference and who gave a paper titled, ‘Putting the Patient in the Centre of Cancer Care’ I asked him to speak on a clinician’s view of important patient care issues, set in the context of the literature.

David Perez: The literature certainly gives us a good background framework for our thinking and approach to patients, but we have to consider, both, the literature and the individual in front of us.

Michael Bouwman: In your talk you mention that denial can sometimes actually be a useful thing; can you talk a bit about that?

David Perez: Oh well, denial is an interesting discussion point, I think we observe it quite frequently; some cases of denial are almost mind blowing in their immediacy. But I think many people exercise denial at a lower level. Sometimes, it’s discussed in a pejorative way—that it’s a negative thing that needs to be rectified. I think its part of the human condition and generally it’s adaptive. There’s not a lot of literature on denial and the taxonomy of denial is also not that clear. But the literature would suggest that for most people it is adaptive, and particularly denial of the physical symptoms, or the physical deficit of cancer, can be productive in the sense that people still live a full life.

Michael Bouwman: Decisions about expensive medicines—how do doctors tackle that with their patients?

David Perez: Well, expensive medicines is a major issue in New Zealand, because the number that are funded by the government is very low, certainly lower than Australia, and yet all the patients are generally aware of these medicines based on the media, Internet and so forth. And, for some it’s real dilemma as to how far to introduce the patient to this topic, particularly if they perceive that they are really struggling financially, and that the prospect of paying for these things is just completely out of the question. So, I think in some ways doctors, oncologists, have become a bit tortured about the issue; the literature would suggest that the vast majority of people, regardless of their willingness or ability to pay for them, like to hear about them. That’s reassuring, in a sense, because it means we can introduce the topic to people and then ask them whether they wish to proceed with greater details concerning cost and so forth. So, I think that should be the message that goes out—everyone should have that issue raised with them.

Michael Bouwman: Yes—and that’s not happening at the moment.

David Perez: No, and I think there’s still a lot of filtering as to whether patients are given that information, I think filtering is slowly diminishing though.

Michael Bouwman: And, another thing you addressed in your presentation was the weighing up between quality and quantity of life for a patient.

David Perez: That’s a bit surprising that the issue of quality versus length of life is relatively poorly represented in the literature, because we talk about it all the time, you know, it’s of great interest to people, including, I think, the lay public, would have quite strong views on this. But, the literature is very sparse, what it does indicate to us is the majority of people would like, both, quality and quantity, which is understandable, but the significant minorities, who are either totally committed to quality only, or to quantity, regardless of the costs, in terms of quality. We’re doing research in Dunedin currently in that very area, which is looking at, do those attitudes change over time, and I think it’s important to establish that because someone’s initial wish many actually change throughout the illness, and we need to respond to that.

Michael Bouwman: On that note, thank you very much for talking to IPP-SHR Podcasts today.

David Perez: Pleasure.

Helen Neser & Gay Dungey

Michael Bouwman: And I also spoke to the presenters of a workshop titled, ‘Integrating the Bunker into Mind, Body and Spirit – A Radiation Therapy and Health Professional’s Perspective’.

Hazel Neser: I’m Hazel Neser and I work in the Department of Radiation Therapy at the University of Otago. I’m not a radiation therapist, I have a psychology background and I train radiation therapists.

Gay Dungey: And I’m Gay Dungye and I was a radiation therapist, but for the last ten, fifteen years I’ve been teaching on the radiation therapy programme.

Michael Bouwman: OK—and what can you tell us about vicarious shock and second hand trauma?

Hazel Neser: Well, we have a shared interest in minimising the impact of what’s sometimes called vicarious trauma, secondary shock, secondary post-traumatic stress, compassion fatigue on health professionals, because we notice that with some of our student cohorts that graduate, as they leave the profession within three to five years. So, looking at how to work protectively, and for those who have a mentoring role with trainee health professionals in the clinical environment, to just think about in terms of their own clinical practise, how they can encourage young people to develop more effective strategies; and it was based on Gay’s work, and I’ll let Gay...she conducted a study with young trainees.

Gay Dungey: I looked at how radiation therapy students coped with their feat of treating cancer patients, and so the affect that the patient with cancer has on them. So, I found some very positive things: the students felt a sense of pride in what they do; they felt an increased value in their friends and their families; but then it also had some negative impacts, in the fact that society doesn’t often cope well when you tell them that you treat patients with cancer, in, you know, radiation therapy departments, and dealing with some of the responses from the general public and issues around that. And then they felt like they couldn’t cope with other people’s—what they perceived as—minor problems, like the common cold, or, you know, you can get over the cold, but we deal with people that are coping with cancer, so, there are some very positive things that came out and some rather negative things, which in the end affected their identity development as young people.

Michael Bouwman: And what are the main stressors in the field?

Hazel Neser: Managing patients’ distress.

Gay Dungey: And the students found treating patients who were palliative very difficult, patients who are potentially going to die, they may not die next week, but I think that realisation that a lot of the patients, even though they’re being treated in a radical style. For example: lung patients and oesophagus patients actually aren’t going to do that well.

Michael Bouwman: Yeah, they’re not being rescued.

Gay Dungey: Yeah, so they had problems coping with that side of it. And they didn’t know what to say or do, they felt scared to talk to them in case they said the wrong thing.

Hazel Neser: Consistent with the literature that looks at who’s at greatest risk of experiencing vicarious trauma; it is those people who have a natural ability to engage empathically, that’s one of the greatest predictors.

Michael Bouwman: So, empathy is a disadvantage.

Hazel Neser: ...is a disadvantage. So, on one hand we are encouraging them to be empathic, but now we need to put things in place to enable them to continue to be empathic without becoming overwhelmed with compassion distress, particularly in the palliative context.

Michael Bouwman: So, that has somewhat to do with their own sense of self, their own self image then?

Gay Dungey: Yes, yes—well for the students particularly there was a lot to do with their own self image and who they are and where they are. When you say, “Oh, I’m a radiation therapist,’ and, you know, and people say, “What’s that?” and then you tell them and then the response is, “Oh, how depressing it must be and oh, I couldn’t do that.”

Michael Bouwman: Yes.

Gay Dungey: ...you know, so even though they feel a sense of pride in what they do, they’re getting this lack of understanding coming through just from general society, and the fact that they don’t.

Hazel Neser: And it’s not just about how depressing, it’s also that you work with radiation, there’s a scary aspect to radiation—that it can’t be good for you.

Michael Bouwman: Right—so there’s an idea that their own health is at risk. OK, and so what are the practical implications of this kind of research?

Hazel Neser: Well we explored ways...we looked more particularly at the importance of sustaining our practice by keeping in mind what our sense of meaning and purpose and hope in what we do, and so that that’s not eroded. And also remembering to connect with communities particularly, because when we get quite—traumatised can feel quite a strong word—but when we feel overwhelmed, we may withdraw from very nourishing communities, and to remain engaged with communities that still nurture and nourish us. So, that’s an aspect of self-care, we focused more on that rather than the usual work/life balance, just to remind people, what attracted you to this work.

Michael Bouwman: In the first place.

Hazel Neser: In the first place. How do you measure success; what can you control in your work.

Michael Bouwman: Well, thanks very much for talking with IPP-SHR Podcasts.

Andu Iordache - PhD student in Psychology, University of Auckland

Michael Bouwman: Another paper was delivered by a PHD student in Psychology at the University of Auckland, Andu Iordache, who gave a presentation on, ‘Making the Case for Using Dream Talk in Cancer Care”

Andu Iordache: My research is on dreams of hospice patients, looking into the role their dreams may play within the context of advanced terminal illness. It’s not a very common topic, I realise that, but I think our dreams do actually have a chance of being integrated within the studies on spirituality of cancer patients. You can learn a lot about people just by asking them a simple question: “What have you been dreaming about recently?” “Have your dreams changed since your diagnosis?” Can you make any connections with what’s been happening in your waking life?”

Michael Bouwman: So is it more of a way to open a conversation with a patient, or is it more than that?

Andu Iordache: It is a good way of opening a conversation, at the same time you would expect—what they called a continuity hypothesis in dream psychology—when you expect some of those issues that are concerning them in their waking life to come up in their dreams. So, it’s really about finding out what are those areas where patients need help, and sometimes even if they don’t—if the dreams are not very symbolic, you know, like very metaphoric, like seeing is falling off a plane without a parachute, or that type of dream—you know just asking people about a dream they might refer, because it’s such an open question, and they’re the only competent to answer that question, because we obviously can’t observe their dreams, so actually they can say whatever they feel like saying, it gives them a chance to talk and to refer to those issues that are important in their waking life, regardless of whether those do come up or not in their dreams. Quite often they do come up and that’s an area, something that I am researching.

Michael Bouwman: And is it helpful to conduct these types of interviews with patients over a period of time?

Andu Iordache: Well, yes and things change the trajectory of illness, as I’m sure you know, is changing so that actually shows in the dreams as well, like sometimes you could have, you know for example, the types of dreams I am looking at in particular, because they are linked to waking distress, is repetitive recurring, or nightmares. And, sometimes if someone is stuck, you know, at a stage, there’s some unfinished business there, and you see that coming up in the dream, either in a direct form or symbolic form. Sometimes, you see some moment in their dream life, for example, they don’t have just one dream, they don’t have the same dream, they have the same dream theme or symbol, but there’s actually a bit of a different context to it. So they’re working through those issues, those waking life issues, towards some kind of resolution. Now, this is obviously highly individualised, like it’s not a one size fits all type of approach, because everybody’s different, not everybody remembers their dreams very well, so it’s just an additional tool to improve communication and reduce isolation in patients.

Michael Bouwman: OK.

Andu Iordache: I think any medical personnel who deal with palliative patients can use this as an additional extra tool. And even if patients refuse to talk to you about their dreams, they say they don’t want to, it’s still important information because it might mean that, either, they have some delicate issues that they don’t want to attend to, or it might be that your relationship with them is not as good as you would like it to be so that they would trust you with their dreams. Some people think it’s awkward to ask people about their dreams; but then isn’t it awkward to talk to palliative care patients about next Christmas?

Michael Bouwman: Yeah—No, it’s a fascinating way to talk to a patient about what their innermost thoughts are without directly asking them.

Andu Iordache: It is. I think that’s a very astute observation. One thing with patients, you know, they slowly disengage, particularly in the more advanced stages of the illness, they slowly disengage with the outer world so they spend more time stuck in bed, doing things that... without a purpose or a goal—not a worldly goal anyway. So that kind of state is more of an altered state of mind, so this is where probably the focus on their dreams and turning inwards might be helpful to maintain communication with them, because if you try to keep talking about those daily things that belong to the consensual reality of the healthy, they might not feel that motivated to talk.

Michael Bouwman: And I suppose it might inform themselves as to their progress and how their attitudes are changing as the illness progresses.

Andu Iordache: Yes—it depends on their recall as well. Again, this is—people don’t have to make anything. Another important thing is that dreams in themselves might not mean a lot; it’s the mean making process that’s quite important. Because some people might associate them to a spiritual source, some people would just think that they are due to medication, and that is a big one, because the current state in palliative care is that we only hear about patients dreams when they reach a stage where they have traumatic nightmares, and we only deal with that by giving them meds. So, that’s very medicialised in regards to dreams and symptons. Dreams can be...don’t have to be nightmares to talk about them; they are part of someone’s spirituality and may be a more increasing, you know, a more important part than it was ever before in their life. Because, you know, in your dreams you can still do things, whereas you’re stuck in bed. In your dreams you might still—like one of my patients: going to China, going to Hawaii, going hunting, doing all that in his dream life, so there is a lot still happening for you in your dreams; you might have good dreams about the good old times. So that’s another...you know that can actually be a positive...sometimes those people are upset that they woke up from those dreams, because they would have gladly stayed there forever. One limitation about, you know, when we talk about their dreams is that we can’t really observe their dreams as we can’t do that with anyone. So, that is—they are the only competent: they are the only ones, who have actually been there and saw what they’re dreaming, and obviously we have to rely on their recall, and that’s interesting, that’s a limitation when you study dreams, but at the same time it’s a big advantage because that makes the patient the only competent in reporting and judging those dreams, so and that forces us into listening more as health care professionals, which we don’t always do, like we tend to...if we’ve seen a symptom a hundred times we are going to be tempted to say, oh I know what that is and I can tell them, you know, tell them all that. So, we’re the experts, but with a dream we can’t really do that because it’s their individual experience and we didn’t have direct access to that, and, you know, it’s really in their power to decide if they want to talk to us about it, if we’re going to talk about dreams we’re going to have to listen rather than remember to listen, which we always forget to do.

Michael Bouwman: Hmm, and that’s got to be an advantage. Well, that’s a fantastic insight and could be well used as a useful tool.

Andu Iordache: Definitely hope so.

Michael Bouwman: Okay, well thanks very much.

Andu Iordache: Thank you Michael.

 

Amy Munro

Michael Bouwman: Next I spoke with Amy Munro about her paper, ‘LifeBlood LIVE, an Online Forum for Haematology Patients’, co-authored with others mentioned on our website.

Amy Munro: I’m Amy Munro; I’m support services manager at the Leukaemia and Blood Foundation in New Zealand. We provide psycho-social support and information for patients and families being diagnosed with blood cancers and also non-malignant blood conditions. I’m talking today about our new online support and information forum for those patients, which is called LifeBlood LIVE.

Michael Bouwman: Great, and could you tell us a little more about that. It’s been operating for about a year now?

Amy Munro: That’s right. We launched the website in September, 2008, at World Lymphoma Awareness Day—which is a big awareness campaign for us. And in the year and a bit since then, we’ve got over two-hundred registered users, and a lot of people have frequently viewed the site and look at the conversations going on in the forums.

Michael Bouwman: Fantastic. And would they have heard that from word of mouth? Or just Googling it? How do you think they came into contact with it?

Amy Munro: We get a lot of site referrals, because we look at the analytics of the site. A lot are organic and that people have Googled it. We also get site referrals coming through from our main website, which is: leukaemia.org.nz. When we talk to people in hospitals and on the phone, when they contact us, or are referred to us, we tell them about the site as well, and do a lot of publicity, and we know that there’s a lot of word of mouth from other patients as well.

Michael Bouwman: And it’s a forum, so they are encouraged to converse on the site?

Amy Munro: That’s right—it’s an open forum, which means that although you have to register to make a post, anybody can view the site, so we know a lot more people look at it than actually post on it. But, people can, as I said, register and can remain completely anonymous; all the public sees is a user name and a photo, if you choose to upload one, but you don’t have to. There are disease specific forums, for example: you might have been diagnosed with multiple myeloma, you can click on the myeloma link and then see the conversations that have happened within there. You can start your own conversation, or join someone else’s, and there’s also some non-disease specific forums as well that talk about side-effects of treatment, talking to your family, and there’s also a separate carers and family forum as well.

Michael Bouwman: OK, and who does the moderation?

Amy Munro: So, the site is moderated by myself and the other members of our patient support team: there are four of us throughout New Zealand and we’re all registered nurses with experience in haematology, and working with supporting these patients. So, what we do is we have a month by month schedule of moderation: so when it’s your month, every day we read the site, read the new posts, and also check the inbox for any new registration emails, or any queries or problems people have emailed through to us.

Michael Bouwman: Right. So as well as being informative for the registered log in users, there must be information value to you as well.

Amy Munro: Absolutely. We try and take a bit of a back seat with moderating: if someone says something on the website that is asking for help, they are perhaps saying, has anyone else been in my situation? We’ll just kind of sit back and watch that for a couple of days to wait for another member of the public, you know another user to answer and respond. The whole point of this forum is for people to talk to other patients, and people experiencing these things, you know, not necessarily to talk to us. Although, if we notice that there hasn’t been a response, we’ll quite often make a post of support. The other form of moderating is to make sure that we’re a bit wary of perhaps posts that aren’t necessarily appropriate, and that might include if someone were to make a post suggesting that perhaps chemotherapy wasn’t a good idea, and perhaps you should try x, y, z instead, and we’ve never had to...

Michael Bouwman: Right, someone giving de facto medical advice.

Amy Munro: That’s right. We’ve never had to remove a post—which we’re very proud of, because we know from other forums that it exists, that there have been spammers and people posting things that aren’t appropriate.

Michael Bouwman: And does your data suggest that the registered users are within New Zealand, or their all over the place?

Amy Munro: The majority are within New Zealand, but we have had seen on the analytics that we do have views from other places. The actual registered users, I think, the huge majority are in New Zealand, I think there might be a couple in Australia. But, in terms of the site, there are views all around the world. It’s very interesting.

Michael Bouwman: Well, congratulations on that and thanks very much for talking to IPP-SHR Podcasts.

Amy Munro: Great. Thanks.

 

Sarah Hunter - Registered Nurse and Doctoral Candidate

Michael Bouwman: Sarah Hunter, a registered nurse and doctoral candidate from Auckland, New Zealand, spoke with me about her paper, “The impact of premature menopause and fertility damage from cancer treatment’. Could you tell us a little bit about that paper?

Sarah Hunter: This study is a qualitative study in which I interviewed seventeen women from around New Zealand. These women were aged twenty to forty-five at the time of diagnosis, and were six months to ten years from the end of their primary treatment, and disease free to the best of their knowledge, and had a variety of different cancer diagnosis.

Michael Bouwman: Okay. And you identify four categories that illustrate your participants’ experiences of premature menopause and fertility damage. Could you tell us about that?

Sarah Hunter: Yeah sure. The four main categories were: the first ones to do with sort of a major life disruption and that was also to do with decision making, and how they coped with that kind of disorder; then the next category was to do with the many loses that they experienced, associated with fertility damage and premature menopause; the third one is to do with the different kind of emotional impact that had on them, and the fourth one is to do with their self perception and how that’s been impacted on and changed as a result of these things.

Michael Bouwman: And what were the practical implications of your findings?

Sarah Hunter: I think the sort of overall impact, which seems to supersede just fertility damage and premature menopause, and I illustrated this in my presentation with lyrics from a song called “Hearing Damage”, which...

Michael Bouwman: Tom Yorke, Radiohead.

Sarah Hunter: Tom Yorke from Radiohead—you’re obviously into Radiohead like me. And that the chorus lyrics from the song go along the lines of: “They say you’re getting better, but you don’t feel any better. You wish you felt better, you wish you felt better.”—or something like that. And that is a really good way to explain what these women were saying to me, that they’re highly functioning cancer survivors who—to look at them you wouldn’t realise that they’d had cancer, you wouldn’t realise that they were struggling with the ongoing sequelae of their cancer; they wish they weren’t—you know, they wish that they didn’t feel these things and experience these things. But, this is ongoing and I think we health professionals, we’re missing the importance of fertility damage and premature menopause at the decision-making stage, we don’t make enough of it to women when they’re making their treatment decisions, and therefore, certainly the women I spoke to didn’t realise how important this was—once they’ve started treatment or had treatment it’s too late. Having said that, all these women indicated that they would still have gone ahead with treatment, but it would have found it better to cope with if they’d known better. So, as far as practical implications go, I think as health professionals we need to make more of it at treatment decision-making, and we need to realise that the implications of these side-effects are ongoing, and that in the survivorship phase we need to offer more support, and be more open with asking about it and talking about it to people, throughout the survivorship phase.

Michael Bouwman: And making sure they’re listened too.

Sarah Hunter: Absolutely.

Michael Bouwman: Okay. Well it’s been a pleasure talking to you Sarah.

Sarah Hunter: Thank you very much.

 

Anna Holmes - PhD candidate, Department of Bio Ethics, University of Otago

Michael Bouwman: Anna Holmes is a PhD candidate from the Department of Bio Ethics, University of Otago, Dunedin.  I spoke to her about her paper: ‘Bearing Witness to Suffering – Letting go of Control’, which she presented at the 2009 Psychosocial Oncology New Zealand conference. Can you tell our listeners a little bit about your paper?

Anna Holmes: Yes. This paper has come directly out of a PhD that I’m in the process of writing up, which is on spiritual issues in general practice. And one of the very strong themes was bearing witness to suffering. I guess the reason why this came up as such a strong theme, is that the actual action of listening and bearing witness seems to be a healing one, and the doctors themselves talked about the healing effect of being with and bearing witness to the suffering the patient was going through.

Michael Bouwman: Right.

Anna Holmes: The sacred in medicine was another theme that emerged from the doctors and this didn’t necessarily refer to the religion kind of activity, but it referred to a sense of transcendence, which they had about their work. The enabling of the transition from life to death is something that GPs are also involved in. Part of any transitions for human being is actually letting go—it’s allowing yourself to let go of the present state and moving onto a new one. The thing that was most striking in the interviews was actually that the General Practitioners talked about the transitions that they witnessed and the deaths that they witnessed, and one particular one I recall talked about healing while dying; talked about a person coming to a sense of their own wholeness, even as they knew that they were dying. The thing that was very striking was that there was a mirroring, between the doctor and the patients, of the process that was going on. Almost all of my participants talked about the amount of learning that they had from their relationships with their patients.

Michael Bouwman: Right.

Anna Holmes: I also asked them about their experience of family member being sick or dying, and the most striking thing that I heard in that area were in fact from people who had lost family members unexpectedly and suddenly. And one described the sense of a sudden loss of a family member and not having any opportunity to say goodbye as being like ‘having a skyscraper on my head’. And I think that is a very vivid description of the size of the pain that comes with unresolved and unresolvable loss, really, in terms of a sudden and unexpected loss.

Michael Bouwman: Yes

Anna Holmes: But, there were also very positive statements about people whose whole personality changed as they made the transition from expecting to live, for a reasonable period of time, to knowing they were going to die in a short space of time, so that they became peaceful and a kind of centre of comfort and peace for family members, and indeed other members of the community, including their doctors and the medical team looking after them.

Michael Bouwman: Good of you to speak with us today on this wonderful paper.

Anna Holmes: Not at all—thank you very much.

Michael Bouwman: Thank you.

 

Richard Egan - Social and Behavioural Research in Cancer Unit, University of Otago

Michael Bouwman: I caught up with Richard Egan from the Social and Behavioural Research in Cancer Unit, University of Otago, at the 2009 Psychosocial Oncology New Zealand conference about his paper, “Spirituality: who cares?”

Richard Egan: The paper was looking at spirituality and arguing that in the past spirituliayt has been the forgotten dimension, increasingly it’s coming onto the health agenda, particularly in oncology and palliative care. The research that I was reporting on particularly was a PhD study that looked at spirituality in New Zealand hospices, which was the largest study of spirituality in New Zealand, anywhere, but particularly in hospices. And I was trying to map the landscape, map the spiritual landscape of New Zealand at the end of life.

Michael Bouwman: And you looked at the definitions of spirituality as well?

Richard Egan: Yeah—firstly what does it mean? I’ve got a simple taxonomy that suggests that there’s three of four ways of looking at it: that spirituality’s related to religion; it’s related to purely secular things, or it’s a mixture of both, and by and large, particularly in the hospices and in the literature, that latter inclusive definition is the one that comes through.

Michael Bouwman: Okay. And tell us a little bit about your findings.

Richard Egan: Yeah. The participants were patients, family members, staff, chaplains and Maori experts. By and large, spirituality was affirmed across the board as being important to these people. I asked them about definitions and they were understood as being broad, different from religion, but included religion. There were widespread spiritual needs, and in some cases, spiritual needs that were unmet.

Michael Bouwman: And you mentioned that there was a continuum between the bio-medical and the bio-psychosocial and spiritual.

Richard Egan: Yeah I think this has happened in health nationally and internationally, where for, you know, some decades the bio-medical model—some people call it the medicalisation of society—has dominated. But this is changing to some degree or beginning to change. We are starting to recognise that the psychosocial spiritual aspects—lots of people call it the holistic approaches—are important. And it’s not actually saying that bio-medicine is bad, it’s just saying that it’s not the whole picture.

Michael Bouwman: Yeah. And the practical implications of your study?

Richard Egan: The next step is actually to give some feedback to all the hospices in New Zealand, and the biggest need were structural needs. I mean, hospice staff do an amazing job, they are naturally compassionate in their work in a spiritually conducive way, but I think they need more permission, they need more FTE, they need more training, and I think at that structural level—what I call the upstream level—is where we could have the biggest bag for our buck.

Michael Bouwman: Fantastic. Ok, well thank you very much for speaking with IPP-SHR podcasts today.

Richard Egan: Cool.

 

Susan Comber - Social Worker at the Head and Neck Cancer Clinic, Auckland City Hospital

Michael Bouwman: And finally, IPP-SHRs Hamish Holewa spoke to Susan Comber of the Auckland City Hospital, a social worker at the Head and Neck Cancer Clinic, and a delegate at the Psychosocial Oncology New Zealand Conference, 2009.

Susan Comber: I’m the social worker in the ORL service, which is Otorhinolaryngology, and that’s a service for head and neck cancer patients within the wider ear, nose and throat department, and the department really has a very strong multi-disciplinary team, obviously with the medical personnel, and the surgeons, but also very strong team work amongst senior nurses and allied health.

Hamish Holewa: Sure. And how many patients go through the clinic a year?

Susan Comber: To date, till the beginning of December, over four-hundred patients seen at the head and neck diagnostic clinic and it’s approximately a similar number to those that came through in 2008.

Hamish Holewa: Right, so it’s quite a large clinic. And at the conference today you were presenting a poster about the head and neck cancer support group. Do you want to give us a brief overview of that?

Susan Comber: Our support group is really to offer ongoing education and rehabilitation and support for people. So, it’s offered to anybody that wishes to come along and it’s offered as an education program, so we have speakers. Patients who choose to come report that they get quite a lot of assistance from that, both by the opportunity to come back and hear expert information from the treatment team—the surgeons and the radiation oncologists, and oral health specialists and others. So, they get information, they share information and tips amongst themselves, obviously more people whose recovery may be further advanced sharing understanding and support, offering information for people newer to the whole experience, and that’s a feedback loop for the staff as well.

Hamish Holewa: Okay—fantastic. And do patients only go to this once, or is it a recurring support group?

Susan Comber: Yeah. We have a program set up for the year. People’s attendance varies and because it is an open education rehab group, there’s no requirement to a commitment. We have a core membership; we have some people who might come regularly for a couple of years; some people who just come occasionally, and the odd person who would just come once or twice. As well as, in small ways, almost for growth of potential political voices. One or two people felt they wished to represent some key issues for head and neck cancer patients and got the support the group behind them to take things a lot further.

Hamish Holewa: Is that support group facilitated by yourself?

Susan Comber: The support group’s facilitated by my colleague the speech language therapist, Janette, the speech language therapist and by myself, and with backup support from our allied health colleagues, when one of us is away, then someone else will step forward to do that.

Hamish Holewa: And do you want to just talk briefly about the main issues that affect head and neck cancer patients?

Susan Comber: It’s widely understood that people who are treated for cancers of the head and neck do face many physical, emotional and social challenges, and have really long term recovery and rehabilitation requirements. So, many people whose function many have been affected by the treatment, whether that’s swallowing, or breathing, or just the business of eating, or getting back to work, find that the road to recovery is long and difficult. So, those who choose the opportunity to come to the support group feel that that adds to their recovery.

Hamish Holewa: Sure. Thanks for speaking with us today and sharing those insights. It’s been a pleasure Susan. Thank you.

Susan Comber: You’re welcome.

 

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