A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England

Bea is a retired diplomat’s wife and is a quiet woman. She enjoyed her childhood and early adult life in Guyana. Bea came to England on her own in the 1950s to study nursing. Her husband was a lawyer and England became their country of residence. Long periods were spent working and living abroad with her husband as diplomats whilst their two daughters and one son were in boarding school so she wondered whether this absence affected their relationships.

Her son had moved away but now lives with them. Bea has a strained relationship and little contact with one daughter but a good one with the other who is married with two daughters. Whilst in St Lucia she took responsibility for one of her granddaughters when her daughter could not cope with both. She returned to England following her husband’s retirement to work as a midwife but retired due to diabetes in 1997, associating stress with work as a midwife. She reflected this may have caused her diabetes despite taking every precaution including no sugar, small food portions and eating healthily. Some of her personal stress has been alleviated.

Bea missed both her parents but refrained from talking about their deaths whenever the question was raised. Bea believes Buddhist teachings and herbal therapies like karela tea, beechnut and foods such as green plantains and fish help her to cope. I interviewed her three times and from her conversation, it indicated she was managing her diabetes. She was aware of a hereditary component recalling a history of diabetes on her father’s side (who ate whatever he wanted) but none diagnosed in her mother’s family.

Bea was prescribed metformin but developed kidney problems. The metformin was withdrawn and she has since been prescribed insulin. She is self-managing with a strict diet but has the occasional lapses eating sweet things like cakes. Her pattern of managing the diabetes is explained as “cheats” compensated by being ‘good’ and sticking to the diet the next day. Bea talked about finding a cure.

After an active life she can only walk short distances. Bea maintains regular contact with three sisters and a brother, the youngest sister has diabetes. We discussed by phone how she managed her condition on insulin. She felt she had more control and flexibility in keeping the blood sugar levels down depending on what she planned to eat that day.

Bea believes that health care practitioners at the GP diabetic clinic do not understand her needs, denying her a service that should be a right, and she asked again to be referred to the hospital. Her diabetic neuropathy is now being treated. She feels having to wait a few days before her glucose sticks prescription is renewed affects her management of the condition.

Bea made a concerted effort during this inquiry to exercise daily and was eager to become a member of the group offering her home as a venue but mobility problems meant she required a lift to the sessions elsewhere.

Further conversations revealed she had a series of recent falls which are being investigated. I noticed too that her husband has had memory lapses and had forgotten to give her my messages. Following a discussion, Bea has asked for him to be referred to a memory clinic for assessment as he may be showing early signs of dementia.

Reflection

I was warmly received at the first interview and Bea confirmed the transcript was a true record of what had been said when it was returned for co-construction. After I completed the analysis and developed the storyline with Bea, I sent my supervisor our combined effort. Being mentored in PAR is important to instil confidence.

Guyana was on Bea’s mind. Bea recalled a celebrity kind of existence of large houses, servants and chauffeurs and travelling with her husband to many countries, in comparison she lives in a modest London house and accepts they have to live carefully on pensions. On reflection I could have explored the losses in her life of parents, children away in school and way of life. She admitted missing her parents but not the diplomatic life. Perhaps my type of questions did not always get the expansive answers that I had observed in my supervisor. This was a skilled process that I was still getting to grips with and learning about for further interviews. In my continuing dialogue over a year with Bea I learnt a lot more about her and her family.

Bea and I established a relationship as the inquiry progressed. She showed a number of strengths in managing her condition and making decisions on improving self-management. Her action of taking more exercise increased daily as she noticed how much better she felt after a brisk walk.

Initially I found it difficult to establish a relationship with Jane but we kept a dialogue going following my initial visit. She spoke briefly about her early life in Guyana and move to England. Jane is a socially active woman who loves dancing, belongs to many clubs and hosts fundraising events for Guyanese charities. Totally absorbed in Guyanese culture, she also caters for Guyanese events. She eventually did not join the group due to her many interests but was keen to keep in contact with me. I felt I might be able to persuade her to join the group later.

Jane stated she had no problems with her diabetes management, showed strengths in managing her diet, taking prescribed medication, keeping active and regularly using public transport. When diagnosed with diabetes she felt prepared because she was always checking for the condition as her father and grandparents died from it.

In May 2011, post interview I sent her transcript and phoned to discuss but she had not read it, being upset by the death of a sister from cancer living in New York and making arrangements to fly there. Jane promised to make contact with me on her return. I offered my condolences and ended the conversation.

Not hearing from Jane for over a month, I phoned with limited success until August 2011. She had returned from New York but was still grieving for her sister. Clearly she did not want to communicate so we arranged to resume contact in a few weeks. When I called a month later, Jane was more responsive but problems with the local council had occupied her time. She highlighted that she was still busy but managing her diabetes and the local hospital consultant had said it was under control. Although we communicated over a long period she declined my offer to visit again. She listed all the things she did that kept her busy but when I questioned if she would like me to continue she said she found the calls supportive. We arranged a longer conversation in March 2012 to follow up on the story sent to her and went through it together reflecting on what was said. Jane did not attend the PAR group sessions but still wanted to be a study participant so I kept her informed of the issues raised.

I was interested in hearing Jane’s responses to what being Guyanese meant as this had been discussed in the PAR group. She saw it as just the place where she was born but I learnt more about her life in Guyana. She described living with grandparents in a big house with servants as a class thing. Her father did not live there but he came for dinner daily at six p.m. She did not see her mother. She went to live with her father and step mother who took her out of school and life became difficult. She had no secondary schooling.

I asked Jane her reasons for not attending any PAR group sessions. She felt it was for people with nothing else to do. She considered herself well known in her community and involved in many activities such as the neighbourhood forum. She informed me she was going to New York for a few months to look after her 95 year old step-father and an aunt in Toronto.

I contacted Jane on two more occasions on her return and she invited me to a Guyanese dance she organised. We met there and she seemed well and felt she was managing her diabetes with no issues to report.

Jane was a difficult person to engage with and seemed prepared to talk although it took time to establish the relationship. On reflection, it became acutely obvious that she was not keen to talk about her life in Guyana or her long-term condition. She made me feel welcome when I arrived for the initial interview, offering Guyanese delicacies she made especially for the visit. I asked a few questions but did not prolong the interview drawing it to a close with the intention of returning. I am not certain why she was not keen for me to visit again. I noticed that her large house had papers and large black bags lying everywhere. She kept making excuses for its condition to which I responded that I came to see her and not her house.

Jane eventually gave me some feedback about the transcript and her storyline stating it was an accurate record of what was discussed. I accepted her opinions regarding the group because she had the right to refuse if she felt it was not needed. I made an assumption that being Guyanese she would welcome meeting with other Guyanese women but Jane made it clear not everyone wants to attend a group related to their condition.

The relationship with Jane developed over time by telephone when she spoke more openly about her diabetes. On reflection, could I have done this differently? I still do not know but learnt from the process that perhaps I should have left the situation sooner.