Addressing poorer diabetes-related outcomes in Black African and Caribbean (BAC) patients is an urgent healthcare priority. Healthy Eating & Active Lifestyles for Diabetes (HEAL-D) is a Type 2 diabetes (T2D) self-management programme, culturally-tailored to meet the needs of BAC patients. HEAL-D was developed using co-creation methods to ensure its cultural relevance and acceptability. It has been evaluated in a pilot study in primary care, showing significant improvements in HbA1c and patient quality of life (QOL) and resulting in south London commissioners adopting it for wider implementation.
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Innovative co-creation methods were used to address poorer T2D structured education attendance and outcomes among local BAC communities. Kings College London worked with people living with T2D, healthcare practitioners (HCPs) and community leaders to create a culturally-tailored programme. HEAL-D aims to help these communities achieve evidence-based diet and lifestyle goals through supporting and motivating self-management skills. Visits were made to mosques and churches to foster engagement with hard-to-reach patients. Community leaders helped open up communication and gain the trust of patients. Co-design workshops included a meal, which nurtured openness and discussion about what they wanted in a self-management programme; flipcharts and post-it notes were used to get honest feedback; and existing videos were reviewed. HEAL-D integrates evidence-based behaviour-change techniques, dietary counselling and exercise classes to achieve evidence-based lifestyle goals. It is novel and innovative because: it is delivered in community venues, counteracting distrust and avoidance of medical settings; lay educators work alongside HCPs to provide cultural understanding; it offers flexible attendance/programme switching to allow for work/carer commitments; it provides culturally-relevant dietary advice; it nurtures a social support network to overcome stigma and isolation; it offers culturally-acceptable exercise guidance e.g. walking and dancing.
Co-creation methods were chosen because they are more effective for promoting engagement of high-risk groups. Kings College London partnered with patients, HCPs and community leaders, to ensure appropriate cultural tailoring of HEAL-D and acceptability for patients and HCPs. Focus groups and interviews were conducted in local buildings to improve engagement and foster trust with patients, as well as to explore issues relating to T2D self-management, to inform the cultural tailoring of HEAL-D. Church and mosque leaders advocated for the project within their congregations. Topics explored included diabetes and lifestyle knowledge and practices, health concerns, experiences of behaviour change, and the role of families/friends/communities in supporting behaviours. Ten HCPs were interviewed to explore the healthcare needs and engagement of BAC patients and experiences of delivering healthcare to this group. Five faith leaders (three Christian, two Muslim) and four volunteer health advocates were interviewed about how patients could be engaged with T2D self-management through community structures. All participants were invited to two half-day workshops, held in community locations, to discuss setting, media channels, structure and delivery, as well as literacy and numeracy needs. Stakeholders provided feedback on existing educational materials e.g. language/phrasing, content, pitch and understanding, and new draft intervention materials.
Co-creation was highly effective. A total of 80% of focus group participants chose to be involved in the workshops, demonstrating the success of the engagement work. Continual feedback from stakeholders informed the development of the programme and accompanying resources. The curriculum was based on evidence-based T2D guidelines to enable it to be embedded into clinical practice. Group-based delivery, which fostered connectedness, social support and interaction, was the favoured format. Flexible attendance was a priority, so programme switching was incorporated. The best curriculum format involved behaviour-change techniques with a strong focus on participatory activities, along with information on cultural foods. There were seven two-hour sessions, each focusing on a self-management goal. There was an hour of education/group discussion, delivered by a diabetes specialist dietitian alongside a community lay educator, and an hour of group-based physical activity, delivered by trained instructors. Behaviour change was supported by case study videos, which provided role models, group discussion, interactive games and practical tasks, such as a cook-and-taste session and group exercise. A walking group was established, and pedometers were provided with a step challenge. Group-based activity classes, such as dance aerobics and circuit training, were used to foster social cohesion and demonstrate appropriate exertion levels, and a home exercise DVD was made, using community role models. Culturally-relevant dietary advice and printed resources provided portion and cooking guidance. Three diabetes specialist dietitians and four lay educators were recruited and trained to deliver HEAL-D. Six programmes were delivered in church halls, a community centre and a leisure centre in Southwark and Lambeth between May and November 2018. A total of 45 patients were recruited via primary care referral. Participants were, on average, 58 years old (range 31-84), 66% female, 47% Caribbean ethnicity and 51% African ethnicity. HbA1c at recruitment was 62 mmol/mol (range 44-125) and body mass index was 33.8 kg/m2 (range 19.5-55.9). Attendance rates were high; on average participants attended 92% of the programme; 60% of participants completed all sessions, 80% completed all but one session. This is substantially higher than 30-50% attendance at standard education programmes locally. Patients experienced a reduction in HbA1c and an increase in self-assessed QOL of both statistical and clinical significance (HbA1c baseline: 61.9 ± 18.3 vs endpoint: 55.7 ± 12.4 mmol/mol, p=0.036; QOL baseline: 68.5 ± 18.3 vs endpoint: 75.5 ± 16.8, p=0.01). These improvements are considerably greater than for existing programmes. A full-scale research trial of HEAL-D has been commissioned in south London.
Sustainability and Spread
Commissioners and the Health Innovation Network were consulted from the outset to ensure the programme had relevance and potential, and to facilitate fast implementation into clinical practice. HEAL-D has received overwhelming support from several clinical commissioning groups (CCG), and six CCGs have commissioned it for Autumn 2019 delivery (approximately 120 places); this will see it implemented in four new London boroughs.
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