The role of advocacy and empowerment in shaping service development for families raising children with developmental disabilities.

ABSTRACT

INTRODUCTION: Empowerment of families raising children with developmental disabilities (DDs) is essential to achieving rights-based service development. METHODS: In this qualitative study, we investigated stakeholder perceptions on the role of advocacy and empowerment in developing caregiver interventions for families of children with DDs in a global context. Participants had experience with at least one intervention, namely the Caregiver Skills Training developed by the World Health Organization (WHO). Participants were clinicians, caregivers and researchers representing five continents, and representatives of WHO and Autism Speaks. Two focus group discussions and 25 individual interviews were conducted. Data were analysed thematically. RESULTS: Three themes were developed empowerment as independence and as a right; the role and practices of advocacy; and using evidence to drive advocacy. Many professional participants defined empowerment within the realms of their expertise, focusing on caregivers' individual skills and self-confidence. Caregivers expressed that this expert-oriented view fails to acknowledge their intuitive knowledge and the need for community-level empowerment. Participants discussed the challenges of advocacy in light of competing health priorities. The gap between the rights of caregivers and the availability of services, for example, evidence-based interventions, was highlighted as problematic. Scientific evidence was identified as a key for advocacy. CONCLUSION: Rights-orientated empowerment of caregivers and advocacy may make vital contributions to service development for children with DDs in contexts worldwide. PATIENT AND PUBLIC CONTRIBUTION Research questions were revised based on views presented during focus group discussions. Participant feedback on preliminary themes informed the development of the interview guides.