Socio-cultural influences on the behaviour of South Asian women with diabetes in pregnancy: qualitative study using a multi-level theoretical approach.

BACKGROUND: Diabetes in pregnancy is common in South Asians, especially those from low-income backgrounds, and leads to short-term morbidity and longer-term metabolic programming in mother and offspring. We sought to understand the multiple influences on behaviour (hence risks to metabolic health) of South Asian mothers and their unborn child, theorise how these influences interact and build over time, and inform the design of culturally congruent, multi-level interventions. METHODS: Our sample for this qualitative study was 45 women of Bangladeshi, Indian, Sri Lankan, or Pakistani origin aged 21-45 years with a history of diabetes in pregnancy, recruited from diabetes and antenatal services in two deprived London boroughs. Overall, 17 women shared their experiences of diabetes, pregnancy, and health services in group discussions and 28 women gave individual narrative interviews, facilitated by multilingual researchers, audiotaped, translated, and transcribed. Data were analysed using the constant comparative method, drawing on sociological and narrative theories. RESULTS: Key storylines (over-arching narratives) recurred across all ethnic groups studied. Short-term storylines depicted the experience of diabetic pregnancy as stressful, difficult to control, and associated with negative symptoms, especially tiredness. Taking exercise and restricting diet often worsened these symptoms and conflicted with advice from relatives and peers. Many women believed that exercise in pregnancy would damage the fetus and drain the mother's strength, and that eating would be strength-giving for mother and fetus. These short-term storylines were nested within medium-term storylines about family life, especially the cultural, practical, and material constraints of the traditional South Asian wife and mother role and past experiences of illness and healthcare, and within longer-term storylines about genetic, cultural, and material heritage - including migration, acculturation, and family memories of food insecurity. While peer advice was familiar, meaningful, and morally resonant, health education advice from clinicians was usually unfamiliar and devoid of cultural meaning. CONCLUSIONS: 'Behaviour change' interventions aimed at preventing and managing diabetes in South Asian women before and during pregnancy are likely to be ineffective if delivered in a socio-cultural vacuum. Individual education should be supplemented with community-level interventions to address the socio-material constraints and cultural frames within which behavioural 'choices' are made.

A multi-faceted approach improves inpatient diabetes care at a tertiary hospital.

BACKGROUND/AIMS: The results of the National Diabetes Inpatient Audit in 2013 showed that the Royal London Hospital had performed worse than the national average in several domains. The aim of this study was to improve inpatient diabetes care at the Royal London Hospital. METHODS: A multi-faceted intervention was designed via a Commission for Quality and Innovation workstream which spanned from April 2014 to March 2016. The National Diabetes Inpatient Audit results of 2013, 2016 and 2019 were compared to look at the outcomes and analyse the changes brought about by the intervention. RESULTS: There were statistically significant improvements in medication errors, prescription errors, glucose management errors and insulin errors in 2016 and 2019 as compared to 2013. More inpatients with diabetes were visited by the diabetes team, received foot assessment and patient feedback improved in both 2016 and 2019 as compared to 2013. CONCLUSIONS: A multi-faceted approach led to significant improvements in patient outcomes and experience, resulting in Royal London Hospital performing well above the national average in the National Diabetes Inpatient Audit in 2016 and 2019. This simple consultant-led multidisciplinary approach could be replicated in other hospitals in UK facing similar challenges.

Enhancing diabetes education and self-management in South Asian populations in the UK.

The South Asian population in the UK is at increased risk of developing type 2 diabetes mellitus. This article considers the cultural beliefs that South Asian patients with diabetes may have about their condition, and discusses the challenges that healthcare practitioners may encounter when providing care for this patient group. It offers practical advice on how to enhance the care and treatment of these patients, including the importance of providing culturally sensitive guidance. There may be particular risks and health effects for Muslim patients with diabetes who choose to fast during Ramadan. The principal author introduced a 'pre-Ramadan assessment' initiative in their GP surgery in Tower Hamlets, London, which aimed to provide education on the risks associated with fasting and to improve patients' self-management of their condition, thus reducing potential health complications.

Improving diabetes care at the end of life.

The number of people with diabetes in the UK is increasing. Many are aged over 75 years, and this has resulted in rising numbers of patients for whom diabetes exists comorbidly with other disease processes. Those with life-limiting illness require palliative care services. However, end of life care for patients with diabetes is generally poor. The aim of end of life care for these individuals is to maintain comfort, while minimising the risks of osmotic symptoms. The wishes of patients, carers and families should be taken into consideration when agreeing new glucose control targets, adjusting treatment or changing focus on diet. Patients and carers should feel that the condition is being managed with the support of healthcare professionals. These professionals need the knowledge, skills and confidence to recognise the end of life to tailor diabetes care appropriately.

New models of self-management education for minority ethnic groups: pilot randomized trial of a story-sharing intervention.

OBJECTIVE: no model of self-management education or peer support has yet achieved widespread reach and acceptability with minority ethnic groups. We sought to refine and test a new complex intervention in diabetes education: informal story-sharing groups facilitated by bilingual health advocates. METHODS: pilot randomized trial with in-depth process evaluation in a socioeconomically deprived area. 157 people referred for diabetes education were randomized by concealed allocation to an intervention (story-sharing group in their own language) or control ('usual care' self-management education, through an interpreter if necessary) arm. Story-sharing groups were held in five ethnic languages and English (for African Caribbeans), and ran fortnightly for six months. Primary outcome was UKPDS (UK Prospective Diabetes Study) risk score. Secondary outcomes included attendance, HbA1c, well-being and enablement. Process measures included ethnographic observation, and qualitative interviews with staff and patients. RESULTS: some follow-up data were obtained on 87% of participants. There was no significant difference between intervention and control arms in biomedical outcomes. Attendance was 79% in the story-sharing arm and 35% in the control arm (p < 0.0001), and patient enablement scores were significantly higher (8.3 compared to 5.9, p < 0.005). The model was very popular with clinicians, managers and patients, which helped overcome numerous challenges to its successful embedding in a busy public sector diabetes service. CONCLUSION: people from minority ethnic groups in a socioeconomically deprived area were keen to attend informal story-sharing groups and felt empowered by them, but clinical outcomes were no better than with conventional education. Further research is needed to maximize the potential and evaluate the place of this appealing service model before it is introduced as a part of mainstream diabetes services.

Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population.

OBJECTIVES: to analyse the narratives of people with diabetes to inform the design of culturally congruent self-management education programmes. METHODS: the study was based on quasi-naturalistic story-gathering; i.e. making real-time field notes of stories shared spontaneously in diabetes self-management education groups in a socioeconomically deprived London borough. Eighty-two adults aged 25-86, from six minority ethnic groups who were in the intervention arm of a randomized controlled trial of story-sharing, participated. Stories were translated in real time by the facilitator or group members. Ethnographic field notes were transcribed, and analysed thematically (to identify self-management domains raised by participants) and interpretively for over-arching storylines (i.e. considering how self-management domains were contextualized and made meaningful in personal narratives). Analysis was informed by both biomedical and sociological theories of self-management. RESULTS: people with diabetes identified seven self-management domains: knowledge; diet; exercise; medication; foot care; self-monitoring; and attending check-ups. Interpretive analysis revealed eight illness storylines within which these practical issues acquired social meaning and moral worth: becoming sick; rebuilding spoiled identity; becoming a practitioner of self-management; living a disciplined and balanced life; mobilizing a care network; navigating and negotiating in the health care system; managing the micro-morality of self-management 'choices'; and taking collective action. CONCLUSION: living with diabetes involves both medically recommended behaviours and complex biographical work to make sense of and cope with illness. Self-management education programmes should take closer account of over-arching storylines that pattern experience of chronic illness and recognize that some elements of self-management knowledge cannot be pre-specified in a structured curriculum.