(Withdrawn) Parent-to-Parent Support for Childhood Neurodisability: A Qualitative Analysis and Proposed Model of Peer Support and Family Resilience

Background and Purpose: Qualitative studies have shown that peer support is of value to parents and other caregivers of children with neurodisability. However, this value likely cascades to other areas such as family well-being. There are various forms and functions of peer support and how they operate is not well understood for this population. Models of family resilience theory can be helpful to situate the impact of parent-to-parent peer support processes within a family context to further explain how this type of assistance is beneficial. Our study aimed to describe the specific pathways by which peer support may contribute to resilience in families and how processes embedded in this type of support can further enrich family resilience theory.

Methods: Following a process of convenience sampling, 19 parents participated in 1 to 1.5 hour-long interviews regarding their involvement in a large (n=300) and predominantly volunteer-based peer support network in western Canada between 2020 and 2022. All interviews were conducted by the first author – a social worker and family therapist with experience working in pediatric neurorehabilitation settings. Participants were all mothers with lived experience caring for children with neurodisabilities. Using reflexive thematic analysis, we examined interview transcripts and notes. Using an inductive coding method, we identified patterns in the data. Following a process of reflection and discussion we then used a deductive approach to situate themes we identified within a family resilience theoretical framework. The data analysis was conducted using Dedoose mixed-methods software.

Results: We identified three main themes from the data: modifying belief systems through shared lived experience; navigating resources; as well as negotiating resources and engaging in social discourses. These themes confirm previous findings in the literature while contextualizing parent-level experiences into broader family-level processes. We also identified subthemes that demonstrate specific pathways through which peer support may contribute to resilience in families. These subthemes included listening, understanding, and responding to stories; sharing lived experience through reciprocal and organic relationships; activating and discovering internal resources; peer support as a resource; and identifying and facilitating access to external resources.

Conclusions and Implications: We present a model for understanding how processes in peer support can be understood within a family resilience theoretical framework. We also propose that the reciprocity embedded within peer support builds upon previous concepts of family resilience theory. Future studies can use this theoretical model to guide research questions to further explore the effects of peer support at the family and community levels.