Background: In the UK, the use of insulin pump therapy in children with Type 1 diabetes is increasing. Many studies have investigated the effectiveness of this treatment in improving biomedical outcomes and quality of life measures. However, few studies have explored the perspectives of children themselves on their use of pump therapy, particularly in the pre-adolescent age group. This study focussed on primary school aged children and aimed to explore in depth how they experienced insulin pump therapy in the context of their everyday lives.
Methods: This was a qualitative study using a hermeneutic phenomenological research design. Fifteen children were recruited from two paediatric diabetes clinics in England. Each child participated in a single semi-structured interview conducted in the home setting. Data was used analysed for themes to describe their experiences.
Results: Diverse and sometimes contradictory experiences were highlighted, demonstrating that children were both helped and hindered by their treatment. Although young, they were actively involved in the management of their own condition not only operating the technology themselves, but also in managing their identities and adjusting to their treatment. Despite the considerable effort that this involved and the negative experiences they described, all but two of the children were enthusiastic about pump therapy and viewed it favourably. Six key themes were used to illustrate these findings: Disrupted bodies / Disrupted lives; Transformed bodies / Enhanced lives; Shaping identities feeling different and the same; Empowering / Disempowering; Getting used to it and Feeling supported / Being unsupported.
Conclusions: The findings offer clinicians the opportunity to gain a deeper understanding of what it might be like for a young child to use insulin pump therapy every day. This in turn, may help to ensure that the delivery of care and support to these children is responsive and relevant to their particular needs.
27 - 29 Nov 2019
British Society for Paediatric Endocrinology and Diabetes