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.

Parents' voices: “Our process of advocating for our child with autism.” A meta‐synthesis of parents' perspectives

“…The selection process has been described in Boshoff et al (), with paired reviewers screening the titles, abstracts, and full texts of articles against the predetermined eligibility criteria, with discussion and full resolution of discrepancies.…”

“…A recent study reported psychological outcomes for parents are primarily determined by individual coping responses, with action‐oriented strategies characterizing resilience (Whitehead, Dorstyn, & Ward, ). Parents describe advocacy as an important coping strategy that enables them to move forward by redirecting negative emotions into positive outcomes (Boshoff, Gibbs, Phillips, Wiles, & Porter, ; Dababnah & Parish, ).…”

“…To explore the complexity of parents' experiences of advocacy for their children with ASD, we conducted a meta‐synthesis (Boshoff et al, ). One aspect of the synthesis involved describing parents' perspectives of the essence of the experience of advocating for their child with ASD, highlighting the challenges and benefits of advocacy (Boshoff et al, ). The synthesis of the findings from the original studies also highlighted a second dimension of the experience of advocacy.…”

Treating Children with ASD: The Perspective of Caregivers

“…A body of literature has explored parents' characteristics and experiences in terms of stress levels, quality of life, coping mechanisms and advocacy (2)(3)(4); however, the investigation of parents/caregivers' perspective on the effectiveness of treatments and services their children receive has been limited (5).…”

The Broader Autism Phenotype in Mothers is Associated with Increased Discordance Between Maternal-Reported and Clinician-Observed Instruments that Measure Child Autism Spectrum Disorder

“…Parents (or other caregivers) are usually the most aware of the child’s development, health status, and current behaviors. Parents are often advocates and experienced reporters on the child’s health conditions (Boshoff et al 2016; DePape and Lindsay 2015). But, ASD interview instruments based on parent report also have potential shortcomings.…”