McCrossin, J., Clancy, A., Grantzidis, F., & Lach, L. (Accepted). “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. Journal on Developmental Disabilities for the Special Edition focused on Changing Social Welfare Provisions and Shifting Family Dynamics.
Peer support for parents as a form of service and system navigation for families of children with neurodisabilities facilitates family resilience through their shared living experience. However, there is little research available describing the experience of the key stakeholders engaged in this type of peer support.
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.
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 peer 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 developing knowledge and skills that can be applied to their 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.
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.
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