Exploring Parent Carer Empowerment in Childhood Onset Disability: A Qualitative Study

BACKGROUND: Supporting parent carers to have greater agency and control over the decisions and actions regarding the care of their child is a central tenet of contemporary health and social care policy. This study explored contextual factors influencing the empowerment of parent carers of disabled children from the perspective of a range of stakeholders. METHODS: We used focus groups and semi-structured interviews to collect data from 28 participants: fifteen parent carers, nine children's service providers, three service managers and one commissioner. Interviews and focus groups were recorded and transcribed verbatim. Data were analysed using a process of reflexive thematic analysis. FINDINGS: We propose a novel model that conceptualises the complex system of interrelated contextual factors influencing parent carer empowerment. This model offers a framework to present the three main themes we generated from the data: (i) Lived Experience: Roles, identities and interactions, (ii)Tensions in a Complex System, and (iii) Information, Knowledge and Wisdom. CONCLUSIONS: The complex system influences both parent carers and service providers, constructing and shaping how these roles and identities are experienced and performed. This is particularly apparent in the interactions between parent carers and service providers, where information is shared, knowledge is created and privileged, and where parent carers can be empowered or disempowered. PATIENT/PUBLIC CONTRIBUTION: Our project team includes a group of parent carer research partners. They have been fully involved in planning and design, data generation, data analysis and co-authorship of the paper. We have recorded involvement using the GRIPP2-short form.