Development and evaluation of a social media-based support group for caregivers of children and youth with complex care needs in New Brunswick

Abstract

Children and youth with complex care needs (CCN) are those with multidimensional health and social care needs who may or may not possess a diagnosis of a recognized condition. Caregivers of children and youth with CCN require timely access to services and resources to ensure the well-being of their families. Online peer-to-peer (P2P) support groups provide an accessible and innovative means of connecting and supporting caregivers and families. Caregivers of children and youth with CCN possess invaluable lived experiences and knowledge around available and effective services and programs; connecting these families together through online P2P support can promote information sharing in a safe and private online environment. Despite widespread use of Facebook groups across various patient and caregiver populations, it is unclear how caregivers of children and youth with CCN use and potentially benefit from these groups. The purpose of this study was to explore the use of a geographic-specific Facebook-based P2P support group by caregivers of children and youth with CCN and its impact on caregivers’ perceived knowledge of health services and/or resources and sense of community belonging. The dissertation is presented in five manuscripts. The first manuscript provides a review of the similarities and differences between patient navigators and case managers; this paper contributed to the development of this research topic by providing insight into the health services navigational support needs of individuals with complex care needs and their caregivers. The second manuscript consists of an environmental scan of Facebook-based P2P support groups that target caregivers of children with youth with CCN in New Brunswick. The third manuscript outlines the development, implementation, and preliminary findings of a Facebook group, developed for the purposes of this research. The fourth manuscript presents the findings on the use of the Facebook P2P support group by caregivers of children and youth with CCN in NB. The fifth manuscript reports on the experiences and perceived impact of participation in the Facebook group on caregivers’ knowledge of programs and services, and sense of community belonging. The dissertation concludes with a summary of the research findings and recommendations for interdisciplinary practice, research, and education.