What makes for a ‘good’ or ‘bad’ paediatric diabetes service from the viewpoint of children, young people, carers and clinicians? A synthesis of qualitative findings

BACKGROUND: There is mounting evidence that experience of care is a crucial part of the pathway for successful management of long-term conditions. DESIGN AND OBJECTIVES: To carry out (1) a systematic mapping of qualitative evidence to inform selection of studies for the second stage of the review; and (2) a narrative synthesis addressing the question, What makes for a ‘good’ or a ‘bad’ paediatric diabetes service from the viewpoint of children, young people, carers and clinicians? RESULTS: The initial mapping identified 38 papers. From these, the findings of 20 diabetes-focused papers on the views on care of ≥650 children, parents and clinicians were synthesised. Only five studies included children under 11 years. Children and young people across all age groups valued positive, non-judgemental and relationship-based care that engaged with their social, as well as physical, health. Parents valued provision responsive to the circumstances of family life and coordinated across services. Clinicians wanting to engage with families beyond a child's immediate physical health described finding this hard to achieve in practice. LIMITATIONS: Socioeconomic status and ethnicity were poorly reported in the included studies. CONCLUSIONS: In dealing with diabetes, and engaging with social health in a way valued by children, parents and clinicians, not only structural change, such as more time for consultation, but new skills for reworking relations in the consultation may be required.