Background
The ‘MICKY&S’ pilot structured education project was developed to make a real difference to the lives of children with diabetes. ‘MICKY&S’ empowers families to match insulin doses to carbohydrate intake, affording significantly improved freedom and choice in eating.
Recent Department of Health documents support self-care and empowerment as crucial aspects of any high quality diabetes service, with patient-centred care and timely access to specialist education and support forming central pillars of both the Diabetes and Children’s National Service frameworks (NSF’s) NICE guidance for Type 1 diabetes and the most recent ‘Making Every Young Person with Diabetes Matter’ document. Structured education is considered a vital part of patient support packages, particularly in terms of empowering people to take control of their own condition and integrating self-management skills into daily life. Such programmes can have a profound impact on biomedical outcomes as well as improving patient quality of life and satisfaction. Offering structured education to children is an essential component of a diabetes speciality service. It was important to bring the local service in line with other paediatric diabetes units developing similar programmes of education, in the absence of National evidence-based programmes for children. Such a programme would offer an equitable and local service to children in Somerset.
DAFNE and DESMOND courses exist for adults, but there are no nationally evaluated structured education programmes for children with diabetes yet. The aim of this education programme was to develop and pilot a group education programme specifically for children /families with diabetes, seeking user views to inform session design and content.
Why this service is a good example of shared practice
Education is needed for children using multiple dose injection regimens in order to maximise the effectiveness of their treatment in daily life. Whilst programmes had been developed for adults, nothing similar existed for children.
This programme brings the principles of adult structured education for diabetes to the paediatric service without pre-existing training packages or additional resources.
Service Provided
Planning began early in 2007. The children’s diabetes specialist nurses and dietitian designed the curriculum and appropriate patient literature. This included invitation letters, letters to support absence from school/work, pre-course psychosocial assessment forms for parents and children, a booklet about healthy eating and carbohydrate counting, homework diary sheets, insulin dose adjustment guides, test meal guidance and evaluation sheets.
A literature search was conducted to gain a wider understanding of the differing teaching styles that should be employed when educating children and establishing what resources existed in the healthcare sector. Selection criteria were agreed, based largely on expressed interest, age (11-17 years) and multiple dose injection regimen usage. Team knowledge of individuals, as well as family availability for the dates, informed group formation.
The pilot course was delivered in June 2007, with further sessions in November 2007 and 2008; programme evaluation and re-design are ongoing. Each course required the child and one parent to attend two 3 ½ hour sessions a week apart, with a daily food, insulin and blood glucose monitoring diary completed between sessions.
Sharing a meal together was included for both the practical / learning and social benefits of group working. It also afforded opportunities to facilitate injection and blood glucose monitoring workshops with the children prior to their meal.
Each session began with ‘icebreakers’ and involved practical activities that encouraged a friendly atmosphere for shared learning. A very relaxed, child appropriate delivery style was employed throughout.
Knowledge and skills are developed over time and the specialist nurses visited families at home within a month of undertaking the programme to review their progress, trouble-shoot and deliver additional, individualised education. Families were reminded of contact details for accessing ongoing support.
It is an ongoing process to develop structured education that is robust enough to withstand rigorous internal and external quality assurance and to meet all the national criteria
Accountability
Quantitative benefits have yet to be demonstrated; it is likely to be some months before biomedical data can be rigorously evaluated. There are plans to monitor effects on glycaemic control and weight/BMI, but the children and families who have taken part, have enjoyed the experience and found the freedoms and flexibility it brings in daily life very helpful. Most early impressions are that there has been an improvement in their glycaemic control. This has enhanced the team approach to the management of children’s diabetes.
Resources
Curriculum and appropriate literature designed for the programme. Professional time e.g. Dietitian, diabetes specialist nurses, consultant paediatrician
Learning
The programme gives children with diabetes the opportunity to make the same food choice as other children, and the flexibility to lead their lifestyles as they would wish without compromising the control of their diabetes.
The sessions delivered so far have proved immensely enjoyable for all. Professionally, the staffs gain much from the sharing of the participant’s experiences, having fun together and developing working relationships with families.
Also, qualitative evaluation of the programme by children and parents demonstrated a high level of success in quality of life and satisfaction outcomes. They cited almost unanimous approval of the venue, length and timing of the sessions, the amount and usefulness of the ‘homework’ and the group size. Families particularly enjoyed the interactive practical sessions, e.g. weighing cereal, working with food models. Please see the following quotes as part of the qualitative evaluation:
‘We have gained a lot from this. My son sometimes feels like a ‘normal person’ now. He has since taken on loads more responsibility for looking after his own diabetes and this course offered a different way of reinforcing some of the things I was trying to teach him as a parent (although he listens to what others are saying more than to me!). As a parent it can be very difficult to step back and allow them more control, but it helped me to do this. I think his blood glucose levels have improved and he knows more about portion control and understanding different food groups and what he needs.’
‘I tried hard to think of something I did not enjoy or understand, but couldn’t’
‘I enjoyed meeting other parents who share the same problems’
Challenges
The main challenges related to resources: prioritising this development within existing professional time and obtaining funding. Teaching families about carbohydrate counting is an essential part of the course, requiring dietitian hours which are severely deficient in our team.
The programme represents value for money when considered alongside the satisfaction / qualitative benefits described by families. Ongoing funding will require a business plan, but it is affordable and the team are determined to continue delivering the programme for as long as families benefit from it. Empirically, teenagers can be challenging and difficult to engage but nurturing an open, honest communication style can pay high dividends for all.