British South Asian narratives of diabetes and views on future research
6 September 2018
Cardiovascular & metabolic Patient experience
Senior Qualitative Researcher Dr Suman Prinjha, with Project Support Assistant Nasima Miah from the University of Leicester, and Professor of General Practice Andrew Farmer write about a knowledge exchange workshop for patients, public, researchers and health professionals to discuss South Asian narratives of diabetes and what future research should explore. The project was funded by a University of Oxford KE Seed Fund award.
What can health professionals, researchers, patients and public learn from one another about type 2 diabetes? Patient and public involvement in research, and in setting research priorities, is increasingly important because it can help ensure that research focuses on what matters most to patients. With this in mind, we organised a workshop that would provide the space and opportunity for people with different kinds of diabetes knowledge – academic, clinical and experiential – to share perspectives and ideas.
Background: focus groups with South Asian communities
The incidence of type 2 diabetes is increasing globally. In the UK over three million people are thought to be living with the condition, around 11% of whom are of South Asian ethnicity. Compared to the white British population, diabetes is around six times more common in British South Asians, who develop the condition about ten years earlier. Despite these statistics, we know relatively little about the lived experiences of South Asians with diabetes, including views of healthcare, ‘self-management’ and how these intersect with ‘culture’, religion, work, family and other aspects of daily life. We do know that British Asians are less likely to access services than the white British population, that they have worse health outcomes due to diabetes, and that they are underrepresented in research.
We wanted to organise the workshop because we had recently conducted focus groups with people from various South Asian communities in Leicester, which had aimed to include first, second and third generation people of Indian, Pakistani and Bangladeshi descent. In total we conducted eight focus groups (single-sex and mixed) with Bangladeshi, Gujarati, Pakistani and Punjabi populations – communities that are diverse in terms of language, religion, migration history, country of birth, education, literacy, cultural norms and traditions. We asked participants about their day-to-day experiences, challenges and support needs, including support through digital messages.
These exploratory focus groups, set up by Nasima Miah from the Centre for Black and Minority Ethnic Health at the University of Leicester, and facilitated by Suman Prinjha from the University of Oxford, were conducted in English, Punjabi, Hindi, Urdu, Bengali and Sylheti. 67 people talked about their experiences of taking medicines long-term, diet, aging, day-to-day priorities, how travelling to and from South Asia affected their views on healthcare, and how herbal and complementary approaches were sometimes used alongside diabetes medications.
This preliminary research highlighted several things: how much participants wanted to talk and share their experiences; how little we know about the best ways to support patients given the diversity in these communities; and how much more we could learn working more collaboratively: patients, public, researchers and health professionals.
To explore the issues raised in the focus groups further – and to share the findings with people who had taken part in them – we decided to run a workshop for research participants, health professionals and other stakeholders.
The workshop setting
The workshop, held on 27 June 2018, was jointly hosted by the University of Oxford and the Centre for BME Health in Leicester. Thirty people got together to learn from one another about British South Asian experiences of type 2 diabetes, including the challenges, current research, and how they could work together in the future. The group included people living with type 2 diabetes, community centre managers, faith leaders, researchers, health professionals, and representatives from Diabetes UK and Leicester City Council.
Held in the afternoon (2-6pm), the timing of the workshop took account of the afternoon prayer times that were observed by some participants. It took place in Leicester so that our focus group participants could easily attend, many of whom relied on public transport. Few had taken part in research before, and some who had agreed to give a short talk about their experiences felt nervous on the day and changed their minds. We had to be flexible (sometimes moment to moment) and to emphasise the informal nature of the workshop, a key concern for some participants. We also had to be flexible about people coming in and out at different times of the afternoon because of other priorities, including childcare and (shift) work. All the participants who presented spoke in English. The group discussion was mostly conducted in English, too, and some participants spoke in Urdu and Punjabi. Both Suman and Nasima spoke several languages between them, were familiar with South Asian cultures, and were on hand to translate or have conversations in the preferred language of participants.
Talks by health professionals and researchers
Presentations were given by health professionals, researchers and people living with diabetes, and these were followed by a group discussion. Professionals shared what they knew about current research and patients about their challenges and priorities. Current research included studies in self-management and how this could be supported by new technologies. Using examples from research in Cape Town (South Africa) and Lilongwe (Malawi), Andrew Farmer discussed the ways in which SMS text messages to mobile phones have been used to support people to manage hypertension. A similar study is now being conducted in England to support people to take their diabetes medication as prescribed.
This topic was continued by Marta Krasuska from the University of Edinburgh, who talked about the use of text messages in the Pakistani community in Scotland. Marta discussed the findings from three focus groups that she and her colleagues had conducted with Pakistani women to discuss text messages to support prevention of diabetes. This included the content and tone of messages. Messages will be tested in a feasibility study, and delivered in English using an NHS platform.
Carol Akroyd, manager of the Centre for BME Health, gave a brief history of the centre, where staff conduct research, host community events to raise awareness of diabetes and other conditions, and have developed a diabetes risk assessment score that has been translated into three South Asian languages. Training packages have also been developed, including short courses in community engagement and cultural competency.
Suman Prinjha then discussed findings from the eight focus groups that had been conducted with the Centre for BME Health. One of the main topics that participants had discussed was food, including cooking, diet, feasting and festivities. Many had wanted more information about healthy foods, portion sizes, and specific information about South Asian diets: including whether rice or chappati was healthier, about different kinds of chappati flour, lentils, curries, vegetarian versus meat diets, and the affects of herbs and spices in helping to manage diabetes. People also wanted to know more about stress management, and support groups. Diabetes medication was another topic that generated much discussion, and taking medication as prescribed meant different things to different people and depended on context. Medication was sometimes missed or taken at different times, particularly when attending family or community events (and there were often many of these), when visiting South Asia, fasting, when first diagnosed, and when people had several medications for different conditions.
Talks by patients and public
The highlight of the day for many workshop participants was hearing firsthand from people living with diabetes. Four focus group participants talked about the day-to-day challenges they faced and how they dealt with these. Ebrahim, a 47-year-old man who had taken part in the Bangladeshi focus group, was diagnosed with type 2 diabetes when he was 39. He discussed the impact of diabetes on his life, including depression when he was first diagnosed, loss of confidence, anxiety around blood sugar levels, and effects on driving, fatherhood, exercise and insurance premiums. Ebrahim felt that diabetes support should be aimed at the whole family, and stressed the importance of raising awareness of the different ways that a diagnosis can affect a person’s life, not just their physical health.
Ravinder, who had originally changed her mind about speaking in public, reconsidered after she had heard other people present and had seen how informal the workshop was. A 49 year-old woman who had taken part in the Punjabi focus group, Ravinder said that one of her biggest challenges over the past 14 years had been ‘self-discipline’ in terms of diet and exercise. At a recent six-month review with a practice nurse, Ravinder was told that her blood sugar levels had risen and the nurse advised adding another medication. Ravinder said:
All their interest was to add another medication in, and that was it....I’m trying (to lose weight) but I think it would be nice if we could have a little bit more support from practice nurses, GPs. I think all I wanted was for them to say was, you know, maybe on a one-to-one, special case, that “Okay Ravinder, come back in four weeks’ time and I’ll weigh you and do another blood test.” Not every month, you know, just something to support my plan (to lose weight), but it was a total blank.
Shofiqul, a 71-year-old man from the Bangladeshi focus group and a Leicester City Councillor, felt strongly that universities should engage with local communities when conducting research and disseminating the findings.
Stress and a holistic approach to healthcare was another theme that came up several times during the workshop. Rabia, a 62-year-old woman from the Pakistani focus group, said that she was diagnosed with diabetes at a very stressful time in her life when she was migrating from Germany to England. She believed that most South Asians with diabetes had stressful lives and that a holistic approach, including diet and positive thinking, could help. Rabia felt that a holistic approach had enabled her to reduce her diabetes medication with the support of her GP.
Sonal, like Rabia, also related to a holistic approach, and talked about the Ayurvedic clinic and diabetes support group that she ran in Leicester. She recalled the shock she felt when she was diagnosed with gestational diabetes and, years later, with type 2 diabetes. She found it difficult to manage her diet, including at home where she cooked for her family, none of whom had diabetes. Sonal felt that restricting her diet, including at family and community functions, often made her feel ‘outside the community’. In 2012 she set up a diabetes support group, and she stressed the importance of talking about the emotional impacts of diabetes as well as diet and physical activity.
Group discussion: ideas for future research
The presentations helped us to start thinking about the different priorities amongst workshop participants and gaps in our knowledge. A group discussion followed, focussing on the topics that participants wanted researchers to explore. These included:
- Exploring lifestyle factors – other than diet and physical activity – that could affect diabetes, including stress. Participants wanted to know if stress management, counselling, and relaxation and mindfulness techniques could help lower blood sugar levels.
- What are the main causes of stress in South Asian people with diabetes and how might these be managed?
- Are there any natural approaches that can help people with type 2 diabetes, including herbs and spices?
- How does having diabetes affect mental health? Participants discussed whether counselling could help, and some felt that diabetes should be explored not just as a physical condition but one that has emotional and mental health impacts too.
- Is there any research into the differing experiences of diabetes within and across the various South Asian communities, e.g. commonalities and differences between Hindu, Muslim and Sikh experiences, and the effects of age, generation, religion and culture?
- What is the impact of diabetes on families, including carers?
- Is there any research into the experiences of South Asian children and young people living with type 2 diabetes? They may have very different concerns to those of adults. Participants discussed the impact of a diabetes diagnosis on the mental health of young people, particularly as they are often going through many other changes in life.
- Can support groups help people to manage their diabetes better?
- How effective are existing programmes aimed at helping people to self-manage? Have they been evaluated? If so, what were the findings?
The workshop provided a valuable opportunity to hear the views and experiences of people from various backgrounds, and there was a lot of interest in working together. The event also enabled us to develop new relationships and consolidate old ones. Seeing our participants again but in a different context helped us to get to know one another better. Many participants asked how they could continue hearing about our research with British South Asian communities. A lay summary of the workshop was sent to participants one week after the event, and a short article about it was published by the Centre for BME Health.
We also compiled a list of people who said that they would like to work with us in the future, and informed participants of the various ways in which they could contact us to give feedback or get involved in further work. We plan to keep participants updated by letting them know of any papers that we publish on the focus group findings, any grant applications that we write, and any new research that we plan to conduct.
The workshop was our first step in discussing ideas about future research and coproducing a project with British South Asian communities. Increasingly seen as an important approach to designing, conducting and disseminating research, coproduction involves people working together, not in spite of their different kinds of knowledge, experiences and perspectives but because of them – the value of which was striking in this workshop. Our next step: to submit joint applications for funding with patients and public. These will draw on the ideas generated in the workshop as well as explore new methods of coproducing research with British South Asian communities.
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