Diversity in diabetes

Project aims

The first part of this project is to identify the barriers and what helps to improve blood sugar control. We’ll give special attention to socio-economic status, culture and ethnicity. Together with patients and their families we will co-design culturally appropriate support packages and understand the practicalities of delivering them in clinic.

We will design the package alongside Bristol and Birmingham-based children and young people with type 1 or type 2 diabetes, their families and carers, and healthcare providers. Designing the package with these people should mean it better meets their needs.

Once we have developed the package, we will pilot it in ten other children’s diabetes units before testing it in 40 more centres in England and Wales, in a ‘cluster’ randomised trial. This will help us understand whether it’s acceptable and helpful for these groups.

We will:

• Look at the existing evidence to understand what’s helped children and young people from the groups we’re interested in control their blood sugar
• Review the existing evidence to understand how ethnicity, cultural beliefs, dietary differences, education and socio-economic status influence managing diabetes in children
• Interview children and young people and their carers from relevant ethnic groups to understand how they found being diagnosed and managing diabetes
• Run focus groups and interviews with children and young people, their carers and other key stakeholders to understand how best to support behaviour change
• Design the package with children and young people, their carers and healthcare providers
• Investigate the practicalities of delivering the package
• Run a pilot trial in other locations to see whether we should progress to a larger, full-scale study

What we did

Self-management programmes

We partnered with researchers from the University of Birmingham to review findings from multiple systematic reviews on self-management support programmes for children and young people with diabetes. A systematic review looks at all the available research on a particular topic, analyses it and provides a summary.

Self-management programmes are important when it comes to treating long-term diseases. They help patients manage their symptoms by teaching them and giving them advice about their condition. Amongst others, this helps patients stick to treatments and lifestyle changes. It also helps them deal with the mental and social consequences of their health condition.

During the review, our researchers found that gamification (adding game-style elements like point scoring into non-game activities) could improve how children and young people engage with programmes. They found it was also a good way of giving children and young people information about their condition, especially if they didn’t know or understand much about health in general.

Although technology is important for self-management programmes, the study team found that face-to-face contact is also relevant. Children and young people benefit from psychological interventions delivered by trained healthcare professionals because living with diabetes doesn’t just affect physical health.

Interventions should be adjusted according to the needs of families or carers. They should give families the skills to cope with their children’s needs and help everyone adapt to living with and managing the condition. Interventions should also motivate families to improve their knowledge about diabetes.

Experiences and views of living with diabetes

We reviewed qualitative studies examining the experiences, views, beliefs and attitudes of families from underserved communities whose children were affected by diabetes. We wanted to understand what families, carers and those who deliver diabetes healthcare services felt about the subject. Exploring this helped us understand how services could be improved.

We found that getting to know a child or young person and their family played an important role in providing them with care. Healthcare professionals were likely to get better engagement from families if they used this person-centred approach. We found that using this approach had the potential to mitigate health inequalities.

We also found that healthcare professionals should address any socio-cultural issues seen as important by a child, young person or their family. Rather than focusing solely on clinical concerns, healthcare professionals should address practical and emotional problems, to minimise conflicts related to diabetes management. This helped young people accept their condition and motivated them to continue managing it for themselves.

Designing self-management support for underserved communities living with diabetes

We wanted to explore what was known about designing and implementing self-management programmes for diabetes in underserved communities. We did this by looking at four key design considerations:

• Composition – the design and content of written materials and digital tools and interfaces
• Structure – the combination of individual and group sessions, their frequency, and the overall duration of programmes
• Facilitators – the combination of individuals used to deliver the programme
• Context – the influence and mitigation of a range of individual, socio-cultural, and environmental factors

Our findings suggest that self-management programmes designed to be more accessible to underserved communities should include:

• Readily understood written information and intuitive digital interfaces
• Group, individual and remote learning options
• Programmes of flexible duration and frequency
• Culturally concordant peers and community-based providers
• Self-management support programmes integrated within existing health systems
• Adaptations made according to the language, resources, and beliefs of individuals and their communities