Implementing a structured education program for children with diabetes: lessons learnt from an integrated process evaluation

Abstract

BackgroundThere is recognition of an urgent need for clinic-based interventions for young people with type 1 diabetes mellitus that improve glycemic control and quality of life. The Child and Adolescent Structured Competencies Approach to Diabetes Education (CASCADE) is a structured educational group program, using psychological techniques, delivered primarily by diabetes nurses. Composed of four modules, it is designed for children with poor diabetic control and their parents. A mixed methods process evaluation, embedded within a cluster randomized control trial, aimed to assess the feasibility, acceptability, fidelity, and perceived impact of CASCADE.Methods28 pediatric diabetes clinics across England participated and 362 children aged 8–16 years, with type 1 diabetes and a mean glycosylated hemoglobin (HbA1c) of 8.5 or above, took part. The process evaluation used a wide range of research methods.ResultsOf the 180 families in the intervention group, only 55 (30%) received the full program with 53% attending at least one module. Only 68% of possible groups were run. Staff found organizing the groups burdensome in terms of arranging suitable dates/times and satisfactory group composition. Some staff also reported difficulties in mastering the psychological techniques. Uptake, by families, was influenced by the number of groups run and by school, work and other commitments. Attendees described improved: family relationships; knowledge and understanding; confidence; motivation to manage the disease. The results of the trial showed that the intervention did not significantly improve HbA1c at 12 or 24 months.ConclusionsClinic-based structured group education delivered by staff using psychological techniques had perceived benefits for parents and young people. Staff and families considered it a valuable intervention, yet uptake was poor and the burden on staff was high. Recommendations are made to inform issues related to organization, design, and delivery in order to potentially enhance the impact of CASCADE and future programs.Current Controlled TrialsISRCTN52537669.

A person‐centered education for adolescents with type 1 diabetes—A randomized controlled trial

“…The present study is unique, as earlier educational program in adolescents have not been able to demonstrate improvement in glycaemic control for either boys or girls . In the present study, the intervention had an effect on boys' glycaemic control.…”

“…Attendance was high in the study, an aspect that was found to be difficult in a previous study . Usually, families experience the initiation of CSII as a positive event, and it can thus be easier to achieve higher attendance as the study has a connection with other positive changes.…”

“…The American Diabetes Association (ADA) and the International Society for Pediatric and Adolescent Diabetes (ISPAD) emphasize the right of young people and their parents to receive structured, person‐centered, and empowerment‐based education to facilitate them in managing their diabetes . It has been noted that there is only a small number of group‐based educational program that have been evaluated for preadolescent children and adolescents and none of these show any effect on glycaemic control …”

Quality of care in rural youth with type 1 diabetes: a cross-sectional pilot assessment

“…Offering creative educational approaches that include a strong psychosocial support aspect could be a cost-effective and patient-centered approach. 51 This pilot-level observational study illustrates the feasibility of assessing QOC where little data have been collected-among rural American youth with T1DM. Future studies should consider the unique needs of rural patients with diabetes in intervention efforts focused on serving, educating or delivering tailored diabetes care to reduce disparities between urban and rural residents.…”

Development of an acceptable and feasible self‐management group for children, young people and families living with Type 1 diabetes

“…Between 28 July 2014 and 9 December 2014, 89 eligible families (44% females; mean age 12.4 years, range [8][9][10][11][12][13][14][15][16] received study information, either prior to attending or during their clinic appointment. They were then approached to take part during clinic or were called on the telephone.…”