Development of a Virtual Group-Based Intervention for Caregivers of Youth with Persistent Post-Concussion Symptoms: An Intervention Mapping Approach

ABSTRACT

Background: It is known that health of youth and caregivers are dynamically interconnected. Approximately 30% of youth experience persistent post-concussion symptoms (PPCS), which continue beyond four weeks post injury. Prolonged youth recovery is found to affect caregiver's mental health and family functioning. Parental stress also adversely affects youth with PPCS, suggesting that addressing caregiver needs can minimize negative health outcomes among their children. Despite the critical role that caregivers play in concussion recovery, there are no empiricallyvalidated interventions tailored to the specific needs of caregivers of youth with PPCS. Objective: To describe Move&Connect-Caregivers, a virtual group-based intervention for caregivers of youth with PPCS, using the Intervention Mapping (IM) approach. Methods: The six-step IM approach was utilized to guide the development of the novel intervention. First, a focus group with caregivers of youth with PPCS (n = 5) was held to understand their requirements [Needs Assessment step]. The collected data guided the development of program objectives which include psychoeducation, advocacy, and tools to promote positive family and health outcomes [Objectives]. Next, concerns and educational topics suggested by caregivers and supplemented with the theoretical framework of FAB (family-directed approach to brain injury) helped in designing content and methods of the intervention [Design]. Multiple iterative meetings were held with a clinical neuropsychologist and a social worker to develop intervention components and reference material. Further, consultations with stakeholders and a family leader were integrated into the creation process [Production]. The last two steps of IM [Implementation and Evaluation] are planned to assess program feasibility (Summer 2021) and program effectiveness will be established in a future pilot trial. Results: Move&Connect-Caregivers is a virtual group-based intervention that focuses on support strategies to address caregivers' health needs. It is comprised of six sessions titled as follows Concussion Ripple Effect, School Advocacy, Child's Well-being, Family & You, Parenting is Hard, and Stress & Daily Challenges. This intervention will be delivered weekly by a clinical neuropsychologist and a social worker using the Zoom Health Care platform. Each session is one hour in length, and includes a psychoeducational topic and a group activity followed by discussions and reflections. Handouts and additional resources like websites and flyers will be provided to participants. Conclusion: This novel intervention will shed light on meaningful strategies to improve the well-being of families dealing with concussion. The IM approach is used as a guiding framework to systematically develop an evidence-based intervention for caregivers of youth with PPCS. Virtual interventions are important to enhance accessibility, convenience and social support, especially in current circumstances of COVID-19.