Parent-to-parent support among parents of children with autism: A review of the literature

Abstract

Parents of autistic children have historically reported hardships related to raising their children. However, the access to resources related to the childrearing of an autistic child is not equitable, therefore resulting in exacerbated difficulties for parents in low-resource settings. In these situations, peer support may be a protective factor for parental resilience in which they receive various supports from other parents of an autistic child with similar experiences. Despite its potential utility, little is known about such parent-to-parent support as evidenced by no synthesis of relevant literature. To address this gap, we present a scoping review of 25 studies that included parent-to-parent support among parents of autistic children. Across these studies, a total of 141 and 747 parents participated as parent mentors and mentees with some heterogeneity in their demographic characteristics. We also identified how parent mentors were trained to provide support to their peers and social validity data related to parent-to-parent support and provided implications for future intervention research. Lay Abstract Parents of autistic children have long reported feelings of isolation and increased stress during and after receiving their child’s diagnosis. Increasing global prevalence of autism also calls for increased services and supports to meet the needs of these families, but most parents who live in low-resource settings still report exacerbated barriers. This may indicate the need for diversifying intervention delivery models to increase contextual fit and enhance implementation effects for different populations. For example, many parents have reported parent-to-parent (P2P) model to be a source of emotional support, advocacy, and knowledge related to their child’s diagnosis, and practical advice. However, little is known about this topic due to the lack of synthesis of relevant autism literature. To address this gap, we conducted a literature review to gain a deeper understanding of how P2P support is used. We identified 25 studies based on our inclusion and exclusion criteria, which we coded to extract variables such as demographic information of participants, types of P2P, dosage, target outcomes, and social validity. About half of studies focused on providing support groups for parents, and the other half focused on individual matching and mentoring for skill acquisition of parents. Across the included 25 studies, a total of 141 parents participated as parent mentors and 747 parents as parent mentees. We also present implications for future research.