Title: Developing an Intervention to Support Positive Adaptive Strategies for Adults Recently Diagnosed with Type 1 Diabetes: Patients and Health Professionals as Co-designers
Funder: Department of Health and Social Care

Abstract: Background: Type 1 diabetes(T1D) is generally associated with childhood, however, around half of cases occur in adulthood. There have been few studies examining the experiences and needs of the adult diagnosed population. We recently completed a longitudinal qualitative interview study with 30 adults aged 20 to 67 years diagnosed within the last 3 years. The findings suggest that a diabetes diagnosis in adulthood causes significant physical, psychological and social disruption, contributing to the development of maladaptive behavioural responses and diabetes related distress. Current strategies for the newly diagnosed adults do not attend to these issues, increasing the risk of patient disengagement, psychological morbidity and future diabetes complications. Hence, early intervention to support adults in developing positive adaptive strategies following diagnosis may attenuate these problems. Study aim: To co-design with patients, family members and health-professionals a psychoeducational intervention theoretically underpinned by a bio-psycho-social model of adaptation to help adults formulate adaptive strategies following a diagnosis of T1D. The intervention will aim to reduce their risk of psychological morbidity, social/relationship problems and diabetes complications by enhancing their personal adaptation to life with diabetes and activation of self-management behaviours. Research plan: We have followed the Medical Research Council's guidance on developing and evaluating complex interventions in structuring our work. We will build on our earlier theory and modelling work, to engage patients, family members and health-professionals in a co-design process to develop an intervention. This process will enhance the relevance and acceptability of the intervention and enable us to optimise its active components. The study will proceed in 3 integrated stages following a co-design method that draws on design thinking: Stage 1. Development of ideation frameworks(0-3months). In this stage we will conduct two focus groups with relevant health-professionals(n=8-10 per group) to explore their perceptions and experiences of issues relating to adult onset diabetes. We will analyse the outputs s thematically and integrate them with the patient accounts we have collected in our previous longitudinal study to create a matrix of ideas. This will be used to develop conversation tools contextualised to the perspectives and experiences of both patients and health-professionals. Stage 2. Exposure and Stimulation(4-8months). In this stage we will use the conversational tools, to foster a productive dialogue between patients and health-professionals. We will engage both patients and health-professionals in exploring the needs of patients as they adapt to life with diabetes and current care provision. We will then engage them in solution focussed thinking to consider how a psychoeducational intervention could address those needs. This stage is comprised of the following procedures: parallel workshops exclusive to patients(n=10) or health-professionals(n=10); and then an integrated workshop bringing the patients and health professionals together to prioritise needs and intervention focus. Stage 3 Construction and Optimisation(9-12months). In this final stage of the work we will run a focus group for family members(n=8-10) of adults with recent onset disease(36 months) for them to comment on the resources we have developed. We will then construct the framework and protocol for the intervention, detailing the underlying psychological techniques, curriculum(content areas), delivery methods and outcome targets. We will present the protocol at a final workshop to get feedback from the study participants. Patient/NHS benefits: The production of an intervention with good fit within the NHS that will enable a positive adaptation to the disease as a platform for: increasing self-management activation; reducing psychological distress; increasing social integration; and improving physical and mental well-being in the longer term. The principle benefits for the NHS will be: the production of an improved care pathway for adults with new onset T1D; and ultimately prevention of costly psychological, social and physical complications.

Lay abstract: Over half of the people who develop Type 1 diabetes do so as adults. The issues confronted by adults developing Type 1 diabetes are distinct, as many aspects of their lives are already established (employment, relationships and lifestyle). In talking to adults newly diagnosed with diabetes, we have found that it has a big impact on their current and future life-plans, creating emotional upset and frustration. Consequently, many adults struggle to come to terms with their condition. They can also quickly become fearful of low blood sugar levels (hypoglycaemia) and of diabetes complications (feet, eye, kidney and heart problems). Therefore, in this early period of Type 1 diabetes people can develop psychological problems (fear of complications and hypoglycaemia), and low motivation to look after their diabetes (testing their sugar level and injecting insulin regularly). We have identified that while these patients get practical help with diabetes following diagnosis, they get very little support to help them live positively with diabetes or to address their emotional distress. In this study, we will work with patients, family members and health care professionals to develop a supportive programme of care. The aim of the programme will be to help people with adult-onset diabetes to adjust psychologically, socially and physically to diabetes reducing their risk of physical and emotional complications. The study will involve running group discussions with patients, health professionals and family members to get them to discuss how to better support people following diagnosis, based on what we know about the problems people can experience. In the first instance we will run these groups separately and then we will bring everyone together to agree the content and delivery methods for the intervention. Once we have finished developing the intervention we will present it to all stakeholders for a final round of refinement.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: METABOLIC AND ENDOCRINE