title: Parents' voices: 'why and how we advocate'. A meta-synthesis of parents' experiences of advocating for their child with autism spectrum disorder.
abstract: Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self-efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta-synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. A qualitative meta-synthesis was conducted. Fifteen databases were systematically searched by using key terms related to ASD, children, parents/carers, advocacy and qualitative studies. Twenty-four studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta-aggregation, integration and interpretation. Two overarching concepts emerged, illustrating both the challenging nature of advocacy and the associated personal and societal benefits. These two concepts are supported by eight themes: a life-long, all-encompassing challenge; advocacy as a parental coping strategy; advocacy involving working to create a future; balancing roles and needs; isolation versus support; personal impacts of advocacy; benefits of advocacy; and the barriers to advocacy. The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well-being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist for their voices to be heard during service delivery.
authors.affiliation: International Centre for Allied Health Evidence, School of Health Sciences, University of South Australia, Adelaide, SA, Australia. Kobie.boshoff@unisa.edu.au.
authors.forename: K
authors.initials: K
authors.lastname: Boshoff
authors.affiliation: Royal London Hospital, Barts Health NHS Trust, London, UK.
authors.forename: D
authors.initials: D
authors.lastname: Gibbs
authors.affiliation: Centre for Health Stewardship, The Australian National University, Canberra, NSW, Australia.
authors.forename: R L
authors.initials: RL
authors.lastname: Phillips
authors.affiliation: International Centre for Allied Health Evidence, School of Health Sciences, University of South Australia, Adelaide, SA, Australia.
authors.forename: L
authors.initials: L
authors.lastname: Wiles
authors.affiliation: International Centre for Allied Health Evidence, School of Health Sciences, University of South Australia, Adelaide, SA, Australia.
authors.forename: L
authors.initials: L
authors.lastname: Porter
mesh_terms: D000223:Adaptation, Psychological; D001294:Attitude to Health; D000067877:Autism Spectrum Disorder / Q000523:psychology* / Q000534:rehabilitation; D002648:Child; D002651:Child Advocacy; D006801:Humans; D016487:Parenting; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D012944:Social Support
keywords: advocacy; autism; experience; meta-synthesis; parents