"They may cry, they may get angry, they may not say the right thing": A Case Study Examining the Role of Peer Support When Navigating Services for Children with Neurodisabilities

Background: Peer support for parents as a form of service and system navigation for families of children with neurodisabilities facilitates family resilience through their shared lived experience. However, there is little research available describing the experience of the key stakeholders engaged in this type of peer support.

Methods: Through thematic analysis of qualitative interviews, the present case study examined the experience of three mothers of children with neurodisabilities engaged in a parent-to-parent peer support network.

Results: Peers offer a unique form of support for navigating resources and experiences through shared lived experience. Our study revealed complex aspects of the emotional processes of peer support that have not previously been described. A unique finding was that the peers combined self-reflection and emotional expression in order to simultaneously provide empathy and bridge communication between a parent and service providers. Benefits associated with peer support included further development of knowledge and skills applicable to the peers’ own families; however, the emotional weight of the volunteer work was noted as a challenge for peer supporters. The network coordinator played a dual role, providing support to both the parent and peer.  Our report on the structure and function of this peer support network contributes to a description of the current landscape of navigation support for families of children with disabilities.

Conclusions: Findings suggest that peer support can play a complementary role to professional services in helping parents feel understood and access services that are meaningful to them. Peers can benefit from developing navigation skills; however, their role demands significant self-reflection and emotional investment. An additional layer of support for peers may contribute to the sustainability of peer support networks.

Note: This article is supplemented by information about the Family Support Program of the Family Support Institute of British Columbia and a vignette based on the study findings that illustrates how the peer support network helped one mother to navigate resources and policies on behalf of her autistic teenaged daughter whose behaviour had become unmanageable.