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.

Cultural adaptation of an intervention for caregivers of young autistic children: Community members' perspectives

“…The findings of this study will inform the cultural adaptation of PTA to be piloted in Paraguay, which is the next step in the iterative process of cultural adaptation. Additionally, the findings of this study indicate that caregivers may benefit from programs that incorporate systems of peer support or mentoring relationships among caregivers, which may be especially a good model for low‐resourced communities (Lee et al., 2024).…”

Autism spectrum disorder in the workplace: a position paper to support an inclusive and neurodivergent approach to work participation and engagement

“…The exclusion of parents and caregivers from vocational services and the lack of mental health support for this population may also be costly for the family unit because these individuals experience higher levels of depression, anxiety, and exhaustion compared to parents of neurotypical children [25]. A promising area of practice that combats the stress and isolation felt by caregivers is parent-to-parent support such as parent mentor programs [20,26]. These programs can build robust social support systems which have been associated with lower psychological distress as well as higher positive affect for parents of autistic individuals [27].…”

Exploring the Parental Experiences in the Media: A Qualitative Analysis of Articles Written by Parents of Children with Autism in Bosnia and Herzegovina

“…Additionally, the idea of parents supporting one another emphasizes the need for a collective effort to create a supportive and understanding environment for families of children with autism. Studies have shown that parent-to-parent supports are a good source of emotional support, advocacy, and knowledge related to their child's diagnosis, and practical advice (Lee et al, 2023). Some parents featured in these articles have initiated the creation of their own non-governmental organizations (NGO) for assisting parents of children with autism.…”