Summary
The intervention to improve overall metabolic control and reduce the daily burden of living with Type 1 diabetes was developed in collaboration with children, young people and families. It took the form of workshops covering: how insulin and food affect blood glucose, potential impact of long term high HbA1c, effects of low and high blood glucose on daily living, self-management techniques, and talking about diabetes with confidence. Preliminary results show a reduction in young people’s worries about diabetes, increased sharing of diabetes responsibility among families, and a decrease in hypoglycaemic episodes. Participants were enthusiastic and positive and would recommend the workshop. Parents were impressed hearing the level of knowledge their children had about diabetes. At the end of the groups a leaflet written by the young people was produced.
Results
Seven groups were delivered by 2 qualified psychologists, an assistant psychologist and a diabetes clinical nurse specialist. The intervention incorporated evidence based behaviour change techniques to support the delivery of content informed by the T1DM education network. The workshop included sessions on a) how insulin and food affect blood glucose b) potential impact of long term high HbA1c c) effects of hypos and hypers on daily living d) self-management techniques, and e) talking to people about diabetes with confidence. 25% of families approached (22/89) participated in seven groups (2 – 4 participants). Families with younger children were more likely to attend the groups and participants were unanimously enthusiastic and positive at the end of the day. Parents and young people recommended the day (young people = 9.68; parents = 10), found the day useful (young people = 9; parents = 10), and enjoyed the day (young people = 10; parents = 10). Parents enjoyed listening to their children talk about their diabetes knowledge. Both young people and parents liked sharing ideas and meeting others with diabetes. Young people also indicated that they felt more comfortable speaking about diabetes after participation. A leaflet called ‘What you need to know about T1 diabetes’ has been developed using the ideas of the 22 young people that took part.
Challenge
Evidence shows that 82% of 6-10 year olds and 86% of 11-16 year olds with type 1 diabetes in the UK fail to achieve a blood sugar target (HbA1c) of less than 7.5% (48 mmol/mol). Poor diabetes control can result in acute difficulties as well as long term complications.
Objectives
To develop an acceptable and deliverable programme that is age-appropriate and addresses the needs of children and young people with T1DM and their parents. To collect data on potential screening measures using validated questionnaires.
Solution
The first phase was a qualitative exploratory study to develop an age-appropriate intervention for children and parents. Children with T1DM (aged 8-16) and parents were asked about what they would want from a programme to help manage blood glucose and feedback informed the design and delivery of a one-day blood glucose management workshop. Participants did not want to focus on fear of hypoglycaemia in isolation but wanted to include other factors related to diabetes management such as lack of confidence, isolation, lack of support, and effects of diabetes on relationships and school. There was then a draft intervention run with parents, children and young people with T1DM in 3 pilot groups. Families with children and young people aged between 8 and 16 years old with T1DM contacted by phone or approached in clinic. Families were offered groups based on the young person’s age and gender.
Learnings
An essential aspect of what made the current intervention successful is how young people and parents were engaged in the development process, and their suggestions were used to inform and refine the programme. The pilot groups allowed families to try out the activities and give immediate feedback for each activity. This allowed unbiased, immediate responses rather than opinions given in retrospect which are often neutral and have lost perspective. Retrospective feedback often tends to be positive with people having forgotten or not wanting to give negative comments. Feedback from the facilitators during the pilot groups also helped refine the delivery and organisation of the activities, and establish that the ideal group size was four families.
Evaluation
After each workshop, young people and parents were asked to indicate on a scale, from 1 to 10, how likely they would be to recommend the programme to other young people and families living with diabetes. Families were contacted by telephone and asked how useful they found the day, how much they enjoyed the activities, and how comfortable they were speaking about diabetes since participation. They were also asked if they had changed anything in their diabetes management and their overall impression of the program. Participants were asked to complete baseline and follow-up questionnaires regarding diabetes management, worries about hypoglycaemia and general wellbeing.
