Take a Moment to Breathe: A Multi-Methods Study to Build Supportive Interventions for the Psychosocial and Overall Well-Being of Adolescents and Young Adults with Cancer
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Abstract
Background: Adolescents and young adults (AYA) with cancer face significant physical and psychological challenges due to the nature of their diagnosis and treatment. High rates of psychosocial distress and post-traumatic stress can persist into survivorship, often exacerbated by adverse childhood experiences (ACEs) and social determinants of health (SDoH). This distress may lead to disengagement from treatment and poorer health outcomes. Despite its impact, there is limited research describing the nuanced psychosocial experiences of AYA with cancer and few tailored interventions exist to support their mental health needs especially considering the compounding effects of SDoH and ACEs.
Purpose: This study aims to describe the psychosocial well-being and distress experienced by AYA with cancer (ages 12–21) and to identify perceived barriers and facilitators to managing that distress. The findings are intended to inform the development of targeted, developmentally appropriate psychosocial interventions that support resilience and reduce suffering.
Methods: The dissertation includes three manuscripts. The first is a scoping review using Arksey and O’Malley’s framework and PRISMA-ScR guidelines to examine the scope and effectiveness of mindfulness-based interventions (MBIs) for adolescents with cancer. The second is a multi-methods pilot study assessing anxiety, depression, ACEs, SDoH, and mindfulness traits among 25 AYA with qualitative interviews exploring lived experiences and coping strategies. The third manuscript describes the use of community-based participatory research (CBPR) to co-develop components for a supportive care toolkit with input from a community advisory board (CAB) of AYA with cancer.
Results: The scoping review identified 27 studies showing MBIs are feasible and well-received, especially in digital formats. The pilot study found that increased anxiety and depression were significantly associated with lower mindfulness scores. CAB members helped refine study tools and co-designed a flexible, engaging toolkit that included individualized mindfulness sessions, video game-based coping strategies, and portable resources adaptable to treatment settings.
Conclusion: This dissertation highlights the psychosocial challenges AYAs face and the promise of MBIs and participatory approaches in addressing their needs. Findings support the development of flexible, culturally responsive, and developmentally appropriate interventions to promote resilience and improve quality of life.
