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

Area of Science:

• Health Services Research
• Social Care Policy
• Disability Studies

Background:

• Contemporary health and social care policy emphasizes parent carer agency in decisions regarding their child's care.
• Parent carers of disabled children face unique challenges in navigating care systems.
• Understanding contextual factors is crucial for enhancing parent carer empowerment.

Purpose of the Study:

• To explore contextual factors influencing the empowerment of parent carers of disabled children.
• To understand these factors from the perspective of multiple stakeholders.

Main Methods:

• Qualitative study employing focus groups and semi-structured interviews.
• Data collected from 28 participants: 15 parent carers, 9 service providers, 3 managers, and 1 commissioner.
• Reflexive thematic analysis used for data interpretation.

Main Results:

• A novel model conceptualizing the complex system of interrelated contextual factors influencing parent carer empowerment was developed.
• Three main themes emerged: Lived Experience (Roles, identities, interactions), Tensions in a Complex System, and Information, Knowledge, and Wisdom.
• The model highlights the dynamic interplay of factors affecting empowerment.

Conclusions:

• A complex system influences both parent carers and service providers, shaping their roles, identities, and interactions.
• Interactions are key sites where information is shared, knowledge is created, and parent carers can be either empowered or disempowered.
• Co-production with parent carer research partners ensured comprehensive involvement throughout the research process.