ArticleHealth expectations : an international journal of public participation in health care and health policy2022
The role of advocacy and empowerment in shaping service development for families raising children with developmental disabilities.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed.
- Clinical decision-making in rare bone diseases - A survey among members of the European Paediatric Orthopaedic Society (EPOS) and the European Reference Network on Rare Bone Diseases (ERN BOND).Journal of children's orthopaedics · 2026Article
- Exploring the lived experiences of mothers of disabled children with profound and multiple intellectual disabilities in Saudi Arabia: understanding caregiver empowerment.Frontiers in psychology · 2026Article
- Exploring Resilience and Empowerment in Adults with Reduced Mobility.Healthcare (Basel, Switzerland) · 2025Article
- Facilitators and barriers to implementation of early intensive manual therapies for young children with cerebral palsy across Canada.BMC health services research · 2025Article
- What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Empowerment ability of main caregivers of children with intracranial tumors after surgery: a cross-sectional survey.Frontiers in pediatrics · 2025Article
- Caregiver capabilities: Healthcare interventions for children with developmental disabilities.African journal of disability · 2025Review
- Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina.Autism : the international journal of research and practice · 2024Article
- Starting a cultural collective for mothers of children with disabilities: A case study.African journal of disability · 2024Article
- A Thematic Analysis Investigating the Inaugural Psychosis REACH Family Ambassador Peer Training Program.Neuropsychiatric disease and treatment · 2024Article
- The burden of global outbreaks: Photos of the daily lives of children with congenital Zika syndrome during the COVID-19 pandemic.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- How Families Manage the Complex Medical Needs of Their Children withChildren (Basel, Switzerland) · 2023Article
- The economic burden of individuals living with generalized myasthenia gravis and facing social determinants of health challenges.Frontiers in public health · 2023Article
- The role of advocacy and empowerment in shaping service development for families raising children with developmental disabilities.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Developing a Scale to Measure Public Health Nurses' Advocacy Practices in Group and Community Settings in Japan.Public health nursing (Boston, Mass.)Article
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Authors and funding
4 authors.
Funding
Abstract
introductionEmpowerment of families raising children with developmental disabilities (DDs) is essential to achieving rights-based service development.
methodsIn 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.
resultsThree 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.
conclusionRights-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.
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