Children with type 1 diabetes (T1D) are at greater risk of psychological problems and need psychosocial support as part of diabetes care. The transition from primary to secondary is regarded as one of the most difficult in pupils’ educational careers, with transitioning requiring adaptation to multiple emotional, social, organisational, cognitive and systemic changes. However, little is known about the impact for children with T1D and their parents. The University College London Hospitals (UCLH) Paediatric Psychology Service and Diabetes team developed a brief, family-based intervention that explores diabetes concerns during this period and allows opportunities to share ideas and resources. The Getting Ready for Transition (GReaT) group aims to increase confidence and reduce the concerns of children and parents.
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Individuals living with T1D, and their families, face complex issues integrating diabetes care into daily life, which takes an emotional toll. Psychosocial factors have an effect. Children in the UK transition to secondary school at 10-11 years old, involving simultaneous changes in school environment, social interactions and educational demands. Children with T1D face the additional responsibility of diabetes care shifting from adults monitoring and acting on blood glucose readings in primary school to minimal adult supervision and largely independent management in secondary school. Children often have intensive regimes which can mark them as different from their peers, intrude on activities and prevent them living ‘normal’ lives. Literature searches found no published articles about the needs of, and support for, children with T1D, and their parents, at this time. GReaT is adapted from two other interventions: RICHes, funded by DRWF to improve overall metabolic control and reduce the burden of living with T1D, developed in collaboration with young people and families; and the Tree of Life, which enables young people to share problems and solutions by connecting with their strengths, abilities, hopes and dreams. It has been widely used across cultures, settings and ages, and was adapted for young people with T1D at UCLH. The GReaT group puts the experience and knowledge of young people and their parents first by: providing opportunities to meet other families facing similar challenges and share ideas; allowing parents to hear about their children’s knowledge and personal experience of diabetes in school; facilitating exercises that demonstrate young people’s independence and expertise in looking after diabetes; connecting young people with the strengths, skills, values and resources to support them through the transition to secondary school. GReaT groups were developed and facilitated by diabetes dietitians, nurses and clinical psychologists, ensuring a holistic approach. The pilot group was improved on, based on feedback from children and parents. Parents who attended returned as ‘peer parents’ to share their experiences. All children due to transition, and their parents, were invited to attend and information shared at the parent workshop was disseminated to all families.
Activities encouraged children to see themselves as experts in their diabetes and for parents to explore how to prepare for transition. Children shared how they recognised and treated symptoms of hypoglycaemic and hyperglycaemia and the impact on learning; they created a ‘school bag of life’, identifying hopes and dreams for secondary school, important people who would support them and the strengths that they, and other people, noticed about themselves. They explored challenges they might face, diabetes concerns and the strategies that helped. Parents shared ideas and identified strengths and abilities. Two pilot groups (four boys, four girls, nine parents) were held in the summer of 2016 before transition. The children appreciated sharing and listening to ideas and meeting others with diabetes, while the parents valued each other’s advice, not feeling alone and listening to their children. Parents said they would have valued an information session earlier in the school year.
Their feedback influenced the design of the second cycle of the groups, held in 2017. A total of 15 parents (ten families) attended a workshop delivered by a Diabetes Nurse Specialist, Dietitian and Clinical Psychologists in January to facilitate preparation for transition. There was a Q&A panel consisting of the diabetes team and ‘peer parents’. A summary newsletter was shared with all families transitioning. In the summer 14 families attended three modified GReaT groups, which included a ‘school canteen’ practical session on dealing with carbohydrate counting. Evaluation forms were completed at all groups.
In 2016, ten families were eligible for the groups, with eight attending. In 2017, 37 children were eligible with 38% of families (14) joining. In 2018, 35 children were eligible, 19 parents attended the parent workshop and 15 children were set to attend groups in the summer. Previously there was no support for this group of young people. Evaluation form feedback was used to adapt groups/workshops to families’ needs. Six main themes were identified: increased confidence; reduction in worries/concerns; having a space to talk; diabetes education/management; social connectedness, as well as having a space for fun.
Sustainability and Spread
The GReaT programme is in its third year with its highest sign-ups. The UCLH diabetes team is committed to it and minimal running costs mean it will remain sustainable. User feedback ensures it is meeting their needs. The UCLH team intends to continue the programme annually. Trainee psychologists are shown the delivery approach, meaning ideas can be disseminated to universities and other services when they move. Initial evaluations have been shared in poster presentations at international conferences and a journal article is being prepared. Halina Flannery has been selected to attend the ISPAD 2018 Science School to develop a research proposal to conduct a large-scale randomised controlled trial across three UK hospitals to investigate the effectiveness of the GReaT programme. The UCLH team is working with a PhD researcher conducting qualitative research into the experience of young people with T1D transitioning to secondary school.
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