Empowering Parent Carers of Children With Neurodisability in Healthcare Settings: Co-Producing a Theory of Change for...

Parent carers of children with neurodisability are empowered when they have greater agency and influence over decisions about their child's care. When parent carers are empowered, it benefits both them and their children. Building on previous work, this study aimed to co-produce a Theory of Change (ToC) to inform the development of a new parent carer empowerment intervention.

We convened a group of nine participants (four parent carers, three service providers, one service manager, one service commissioner) to co-produce our ToC. The participatory process consisted of structured workshops co-facilitated by a researcher and a parent carer partner, with iterative phases of data analysis. Analysis drew on behavioural science to develop detailed ToC maps and a provisional intervention plan.

Twenty-nine short-term, thirteen medium-term and seven long-term outcomes were identified and incorporated into causal pathways of the ToC. The group prioritised two medium-term outcomes informing the focus of the intervention: (1) Effective two-way information sharing and (2) trusting relationships between service providers and parent carers. Following integration of a behavioural analysis, the new intervention targets change in seven service provider behaviours.

Our co-produced, theory and evidenced-based intervention targets change in service provider behaviour by focusing on self-awareness and critical reflection, specifically related to how information is shared/managed and how interactions with parent carers are framed and performed.

Our project team includes a group of parent carer research partners. Members of the group have been involved in planning and design, facilitation of workshops and dissemination of findings.