Summary
The Highs and Lows Support Group came about following reports that many patients and families looked after by the paediatric diabetes team at University Hospitals of Leicester did not know anyone else who understood the burden of diabetes. The group helps them feel supported, included and understood. A wide range of events is organised, such as bowling, soft play, mini golf and picnics. The impact has been positive, with parents gaining compassion and understanding from other parents, and the children enjoying meeting others with diabetes. It also helps to show young people and families diabetes technology in a fun, social environment away from clinical care.
Innovation
Some children and parents see the clinic as a threatening environment. They are reluctant to open up to or engage with the diabetes nurses and doctors. Many children/young people (CYP) are the only student in their school with diabetes, or the only one in the family. The support group offers a safe space in a non-clinical setting where they can meet others who understand life with diabetes. It is a place where they can be themselves, talk and share problems without the worry of getting things wrong. Many siblings of children with diabetes also find living with diabetes difficult, which often goes unrecognised. The support group gives them ‘time out’ from being the sibling of a child with diabetes. Again, they can meet others and share experiences, or just make new friends and have fun. The parents also meet and socialise, make new friends and discuss and share their lives with diabetes. The group also improves partnerships between the CYP, parents, careers and the diabetes team, helping to remove boundaries found in a clinic environment. This enables better interactions and improved information sharing. Now, in the clinic, some of the CYP, parents and careers are less apprehensive about being there and feel more at ease with the diabetes team. Some seem more accepting of their diabetes and clearly support one another. It is too early to say if there has been a positive effect on glycaemic control. Once established, the parents and carers will be able to support this venture themselves, with minimal support from the professional team.
Equality, Diversity and Variation
Issues relating to equality and diversity have been addressed by ensuring all families (n = 415) are informed of the diabetes support group at outpatient appointments and via social media platforms. Clear written and verbal information about upcoming events is also provided. The group provides an environment where families’ voices can be heard and concerns addressed. As those from deprived backgrounds may not be able to afford activities like bowling, laser tag and trampolining, fully funded places are offered for all CYP with type 1 diabetes. Activities that do not require substantial funding, such as picnics in the park, are offered to ensure annual budgets can be spent appropriately. Event locations are chosen to be easily accessible via public transport. To cater for the 1-16 years age range, different activities are held, ranging from soft play and trampolining to laser tag and bowling.
Results
The Highs and Lows support group has been established since May 2022, hosting quarterly events each year. In the past year, events included a family picnic in Abbey Park, laser tag, a Christmas party, bowling and BOOST trampolining. Approximately 130 families benefit from funded places at these events. As a way of supporting young people and families, the group is included in diabetes annual review clinics when discussing emotional well-being – a frequent point of discussion, considering diabetes burnout. The positive feedback from the support group has been overwhelming and attendance at the events continues to grow. Families have made financial contributions to the group to ensure it can continue to thrive. In addition, providing this group has reduced phone calls, saving staff time. Families are supporting each other and meeting up outside of group activities.
User Feedback
The feedback from families has been very positive, via text messages, cards and in person. The diabetes team has enjoyed getting to know the CYP and their families/carers in a non-clinical, relaxed environment. The overwhelming benefit of this support group was reflected in families asking when the next event would be, wanting to get involved and reporting the benefits to not only their children but to them as parents. Many CYP shared phone numbers and developed long-term, meaningful friendships. Parents are now involved in organising events along with the diabetes team. Support from the children’s hospital charity and diabetes UK has funded the project.
Dissemination and Sustainability
The Highs and Lows support group was established for families looked after by the paediatric diabetes team at University Hospitals of Leicester, supported by Diabetes UK, who provided a template of how to establish a family support group. The aim is to reach as many families as possible in the service, and ensure that all activities remain free for the CYP with diabetes. Given the limited provision of paediatric psychology services within the team, it is hoped that the peer support group will serve as an alternative service to help remind families they are not alone in the difficulties they face, and that diabetes can also bring new connections, friendships and enjoyable times for CYP.
