Characterizing open and avoidant communication in parents’ caregiving experiences of adolescents and young adults (AYAs) living with blood cancer: Linking communication and psychosocial outcomes

OBJECTIVES: Open communication between parents and adolescents and young adults (AYAs) with blood cancer is key to managing cancer together. However, parents avoid difficult conversations about cancer care and lack support in navigating them. To inform a communication skills intervention to help parents of AYAs navigate challenging conversations in caregiving, this mixed-method study sought to identify difficult topics and better understand psychosocial factors associated with avoidant communication. METHODS: Phase 1 involved 20 interviews with parents of AYAs with blood cancer (aged 15-29) to capture difficult conversations and factors that inform why they are challenging. Phase 2 surveyed 80 parents about openness, avoidance, and psychosocial outcomes. RESULTS: In Phase 1, parents identified 5 challenging conversation areas: (1) expressing negative feelings; (2) discussing disease/care-related information; (3) addressing sexual health; (4) navigating triadic clinical interactions; and (5) talking about mortality. Parents described 3 interrelated factors that informed why these conversations were difficult: (1) lifespan/human development; (2) emotional/psychological well-being; and (3) relational-caregiving dynamics. Quantitative results (Phase 2) confirmed the same challenging conversation areas and extended them with an additional topic parents avoid: caregiver burden. Overall avoidance of these topics was associated with lower clinical communication skills and competence, less openness between parents and AYAs, reduced willingness to communicate about cancer, and greater parental distress. Avoidance of discussing caregiver burden and sexual health with their AYA was associated with higher burden. Younger parents reported higher overall avoidance compared to older ones. Hispanic/Latino parents reported higher overall avoidance than non-Hispanic/Latino. Parents without a high school degree had higher scores for avoiding treatment discussions compared to parents with higher education levels. SIGNIFICANCE OF RESULTS: Findings highlight the need for supportive care interventions that strengthen parent caregivers' communication skills. This study also provides a roadmap of key content to include, ensuring communication skills interventions are relevant and impactful.