A participatory-action research exploration of parent and clinician experiences of type-1 diabetes diagnosis.

Objectives: To systemically explore parent and clinician experiences of type-1 diabetes (T1D) diagnosis at a large UK hospital. To use those experiences to collaboratively create an action plan to improve support for parents and clinicians.

Materials and methods: A participatory action research framework was used to support collaboration between researcher, parents, and clinicians. Data was collected via semi-structured focus groups. Data was analysed using thematic analysis and refinement of themes/findings was supported through reflective groups with participants.

Results: Six themes were identified from parents and clinicians experiences: (1) The limits and pressures on clinicians and the system (2) Parents' emotional lens at diagnosis; (3) The power of knowledge (4) Difficulties with communication and transparency (5) Conditions for learning, adjusting, and forming relationships (6) Sharing experiences & gaining support. An action plan was created to address the needs identified.

Conclusion: The task of diagnosis of T1D in childhood is complex and requires sharing/processing life-altering news and transferring large amounts of information. There is a connection between systemic difficulties (e.g. staff knowledge and communication) and parental distress at diagnosis. Collaboration between clinicians and patients was helpful in identifying actionable improvements to a complex process and system.