Monitoring Change - How men with diabetes psychologically adjust to life with a chronic illness
Monitoring Change - How men with diabetes psychologically adjust to life with a chronic illness
Interview with Dr Lesley O'Hara by Lorna Rouse
Dr Lesley O'Hara
Dr Lesley O'Hara is a research psychologist working in the area of child and adolescent mental health based in UCD Child & Adolescent Psychiatry. Lesley's research interests are situated within the field of critical health psychology and is particularly concerned with the lived experience of illness. Her PhD was completed at Nottingham Trent University.
Can you start by describing your area of research?
My research is concerned with how men experience and adjust to life with type 1 diabetes and incorporate it into their daily routines. I am interested in how their attitudes towards diabetes change over time and how, with change in attitude can come a change in the way diabetes is managed. I'm also concerned with how diabetes can affect family life, moving from being something that's experienced by the individual to affecting their partners; for that I've interviewed couples where the male partner has type 1 diabetes. Another interest is the issues that men choose to talk about away from their families in a private environment, so I've researched what men talk about when they use online forums and support groups. It's about the holistic experience of living with and adjusting to the disease, moving away from the medical concerns regarding the control of blood sugar levels.
Was there a lot of existing research on how men experience type 1 diabetes?
In recent years the topic of men with chronic illness has received a lot more interest, but this hasn't extended to men with type 1 diabetes. There are studies that examine how men and women differ, and research has also tended to focus more on adolescents with type 1 diabetes rather than adults. One complication of diabetes that affects about a third of men is erectile dysfunction and for that reason I would say probably ninety per cent of the papers that focus on men with type 1 diabetes will only look at the experience of erectile dysfunction, so it's very much focused on this one aspect of not even the disease itself but a complication of the disease.
What were the main aims of your project?
I started with the very broad question: what is it like living with diabetes? I use a method of analysis called grounded theory, so I tried to stay as broad-minded as possible before starting the interviews. I wanted the men to lead the research by making relevant what is relevant for them. That's particularly important because I have type 1 diabetes myself and I didn't want the studies to be led by my own opinions.
Is that the basis of grounded theory, that research is data driven?
Absolutely, it also acknowledges that the researcher comes to the analysis with their own experiences. For me that was obviously very important because I have my own experiences of living with diabetes, so when I write up my analysis and when I'm writing papers I need to acknowledge that I'm not coming to it as a blank canvas with no experience and that my conversations with participants throughout the interviews may have influenced what they decided to talk about.
When you were interviewing men with diabetes, was it an advantage that you have diabetes yourself?
Definitely, everyone that took part said this made it easier to talk to me, there was a shared understanding. From a practical point of view they were able to talk about things like blood sugar levels and different types of insulin without worrying about explaining what it all meant. It also helped make the interviews more casual, following a conversational style at times. Anyone doing an interview can start to get a little bit nervous and it was helpful for me to just change the format and tell them a little bit about myself. There was reciprocity so that with each disclosure I would make, they'd make one back, making it very much a two way process.
So it was quite an informal style of interview.
Yes, I learnt that some people become a bit more self-aware when they see a dictaphone and their responses may change, but I tried to keep it as casual as possible and they talked for two hours on average.
It could be quite a sensitive topic, did you have any difficulties interviewing people?
I think that because of my own experience I knew what could potentially come up. Some people did get upset during interviews and that's always hard to deal with, but I wouldn't say that I found it particularly difficult. I have to be very mindful of the fact that I'm meeting people who have the same disease as I have and if they've lived with it for thirty years they may have a variety of complications. It was important that I had my own support from my PhD supervisors, so whenever I did have a difficult interview we would discuss it and how I felt about it. It was very important to be able to go into the analysis of that interview having resolved how I felt about it myself. I really enjoyed talking with participants about the actual experience of living with diabetes and I think they enjoyed it too. For many of my participants it was the first time they'd ever been asked about it and I think it's a terrible thing that you can live with a chronic illness and be asked about your blood glucose control, but never how you feel about living with it. Although it is a chronic life-changing illness I think there is an attitude that there is a treatment, so you've nothing to worry about. For that reason a lot of people feel like they can't offload about it. People do a lot of comparative work saying, 'oh well I know compared to somebody who has cancer I've no reason to be complaining.'
Is that something people did in the interviews?
Absolutely, they constantly compared themselves to people with other illnesses or even other people with diabetes such as those diagnosed at a younger age. They find it difficult to justify being annoyed about it and if you can't justify being annoyed about something it's very hard to offload your annoyance.
How did you go about collecting and analysing data from the online forums?
Initially it was quite difficult to find a forum that had an area specifically dedicated to men with type 1 diabetes, so I had to widen my focus to men with diabetes in general. I've used postings from one particular online community. The forum falls under the sex and intimacy category on their forum listing because again, it focuses on the erectile dysfunction element of life with diabetes. First I got permission from the owner of the website to use the postings after explaining what my research was about and the procedures I would go through to make the data as anonymous as possible. I collected every single posting from that website; the advantage of doing this alongside the two interview studies is that the data doesn't need to be transcribed.
Did you analyse the postings in a similar way to the interviews?
Yes, using grounded theory. The only difference with the forums is that you're very much on the outside and can't ask follow-up questions. The exchanges on the website are really in-depth, the men on this forum displayed a surprising level of emotional expression in comparison to the interviews. They really use the internet forum as a safe place to offload. One of the challenges was making sure postings were from men because everyone had user names. Although it was a men's forum I would say about fifty per cent of the postings were from women. This particular website usefully has a little biography under posts with their personal information, including gender.
So women were posting about their partners?
Yes, asking for advice to try and establish what their role should be and giving advice to other women. Nearly all the postings on that site are about experiencing erectile dysfunction, so a lot of women would post very supportive messages to men who had posted on the forum. It's a very interesting way to see the dynamics in the exchanges between men and women and tied in nicely with the study looking at couples where the male partner has type 1. What surprised me was that, for all of the ten couples I interviewed it was the first time they had actually sat down and talked about diabetes together. A lot of the men were living with concerns about their future health, which their wives were not aware of until the interview. So the extent of disclosure that men made in the online forum was interesting in comparison.
That's interesting because you'd think the forum would feel more public.
I think maybe it's the anonymity of the forum, the fact that it's not face to face. That is a concern people have about using internet data; are you using postings that people made under the belief that they are private? However, people who use this website are very aware that they're posting on a public forum because they have private alternatives to it, which only actual members of the site can see. I went on as a member of the general public, not a site member and looked at what was publicly available.
So you had permission from the website owner, did you need permission from the individuals?
No, because one of the conditions of the contract that they sign up to when they join is that their postings are in a public forum that is the property of the website owners. It is a debatable topic, but I think that the people posting on this forum are very aware that others can see what they're saying, especially when they have private alternatives to the public posts.
What have your main findings been so far?
So far the main findings suggest a theory of adjustment to life with diabetes. Ultimately most, if not all, of the men in the study strive to minimise the presence of diabetes in their lives, downplaying its significance and that compliments a lot of other research into men's health. They achieve this by describing it as something that isn't as serious, so a lot of men would say, 'it's not a disease it's a nuisance.' Describing diabetes is difficult, is it an illness when you don't feel ill with it? A 'disease' sounds serious, but because you can live day to day without feeling like you have a disease participants were very quick to refer to it as a condition - not too serious. Once they view it like that it's then possible to justify moving away from the recommendations health care professionals give and that was the case for every single person in the study. It's as though there is an acceptance that these recommendations from the health professionals are too strict, you're not realistically meant to stick to them. Instead, as individuals they find their own way to live with it. I think this shows that you can't really come up with a blanket treatment that dictates how everyone with type 1 diabetes should live their lives; everyone is different and will find a different way of fitting it into their everyday lives.
I also found that how men live with diabetes is fluid and open to change in response to personal circumstances. The implication of this is that the recommendations someone is given at diagnosis are not necessarily going to be relevant throughout their whole life. A lot of men in their twenties or thirties are focused on their careers, which have priority over their health. Often once they have children they move from this focus on the short-term towards a focus on the future, taking better care of themselves to make sure they can take care of their children. When people see warning signs that complications may arise, again the focus changes from the short-term, in which they can justify not paying attention to diabetes, to being concerned about their long-term health. In order to maximise their quality of life in the future they feel they have to start taking better care of diabetes in the present. This highlights the issue of prioritisation of personal quality of life over health related quality of life and raises the question, why do the two need to be mutually exclusive? Surely it would be possible to achieve both personal quality of life and optimal health. A lot of changes are needed from diagnosis to interactions with health care professionals to make this happen. That's why investment needs to go into this because it has such a huge effect, not just on health and on NHS budget figures, but on someone's quality of life.
What was the role of partners in management of diabetes?
In addition to the lack of dialogue between couples about living with diabetes I found that men often view themselves as being in charge of managing their diabetes and they're sometimes reluctant to accept that their partners do play a role. Although it is played out in the everyday practicalities such as preparation of meals, the role of the partner is often unrecognised. There is also a very different relationship in terms of diabetes care in younger couples compared to older couples. In younger couples I found the man was much more inclined to manage it independently and I think that may be reflective of changing times.
Do you think younger men have a different attitude towards managing their health problems?
Yes, I felt that the younger men were more concerned with the here and now, but similar themes emerged when older men reflected on their younger days. Adjustment to diabetes is life stage specific because as you get older illness becomes a more acceptable part of life. Managing an illness in later life is more expected, so I think that the presence of diabetes in your life when you're in your late sixties into your seventies is almost more acceptable than when you're in your thirties and trying to be the same as your friends who don't have diabetes.
Did you find similarities across the different elements of your studies; the online forum and the two different types of interviews?
In the one to one interviews, men strived to minimize their definition of diabetes, living their lives in a way that's reflective of managing a disease that isn't that serious until a complication arises. Similarly men online would say, 'I know that I haven't necessarily had the best glucose control, but now it's affecting my sexual functioning so I want to get it under control again.' One of the greatest differences was the emotional expression because men really used the forum to vent and to express really extreme emotions, using extreme metaphors. That goes against a lot of the research that looks at how men and women use online support groups. Research comparing what women with breast cancer and men with prostate cancer talk about online overwhelmingly finds that men are concerned with the practicalities of the scientific side of it, discussing treatments, whereas women use it for emotional offloading. I've found that men really do use it as an opportunity to vent their emotions. In comparison, until I specifically asked the husband in the couples interviews what his concerns were, he hadn't spoken about them to his wife.
You've also been looking at traits of masculinity and masculine identity, how did these studies relate to this?
One element of masculinity that came through strongly in some interviews was feeling in control of one's life; choosing how to control diabetes to live their life in their own way, not the way that they're told to by an external person such as a health professional. For the men who really prioritise being in control it was very difficult to accept recommendations from health professionals because they were not seen as recommendations but as instructions. A lot of the time people stop attending diabetic clinics because they want to feel like they're in control of their lives. If a respectful and cooperative relationship with their doctor can't be established this has implications for long-term health. A traditional man is also the provider and working and being able to work was hugely important to every man that I have talked to, it's important to their sense of identity. Sexual functioning is also a very integral part of masculine identity. There is variability between how each masculine trait influences diabetes management. People will say being a man is bad for your health! What I've found is that this may be the case when it comes to work because taking care of diabetes will fall off the radar in order to get a job done, whereas being able to function sexually requires attention to your health and management of blood glucose levels. In that sense, in order to achieve masculine identity and expression through sexual functioning men are more likely to take care of their diabetes. This highlights the problems associated with this stereotypical gendered view that men don't take care of their health and the concept of what a man is meant to be because there are different types of masculinity.
If you were able to explore any other area of this topic, what would you do?
I'd love to have the same focus on women with type 1 diabetes because I don't necessarily think it's very important to highlight differences between men and women, but I do think it's important to be able to develop an intervention for people with chronic illness that attends to the needs of the people that it's being served to. I also think that it's important to look at other disease groups to see if the same issues emerge, such as trying to minimise the presence of other chronic illnesses.
Something that I would love to explore in the future is life stages and to really focus on how attitudes towards diabetes change by doing a longitudinal study. It would be interesting to go back and interview the men in my study again to see whether they continued on the same route. I know of one particular person who got in touch with me to say he had changed his outlook completely following the birth of his son. During the interview he dismissed the DAFNE course as being rather mundane and like going back in time because it involves carbohydrate counting, but a few months later he had just completed a DAFNE course (Dose Adjustment For Normal Eating), was getting an insulin pump and was much more focused on managing diabetes because he wants to be healthy and able to take care of his son. If how people care for their diabetes is open to this much change, health care providers need to be there to advise on incorporation of diabetes management into your life with each change. I know it sounds difficult to tailor interventions to individuals, but as someone with diabetes who experiences healthcare sessions, I think that it is possible during check-ups to look at when diabetes can be worked around the individual's lifestyle. A lot of people with diabetes think that they're expected to fit their life around diabetes and if you go in with that expectation and it doesn't work out you will reject taking care of your diabetes, whereas if you have the proper intervention from the beginning and are shown how to work diabetes around your life I think it will make for a much more successful management of the disease in the long run.
You've said that you think there are implications of your research for healthcare professionals, are there implications for the men themselves?
I think that the research demonstrates that personal quality of life is partly prioritised over health related quality of life. In terms of interventions I think it really highlights that healthcare providers need to attend to the individual man and how they manage their diabetes. Once they do that it will definitely have implications for men with diabetes, who will be able to experience quality of life in both personal and health terms. At the moment there really is a trade-off between the two, men feel like they need to choose one or the other and your health and happiness shouldn't be mutually exclusive.
Thanks Lesley, that's been fascinating.
This interview originally appeared in News & Views in May 2012.