“Somewhat of an Adult”: Understanding the “Dance” of Competing Tensions Parents Manage While Caring for an Adolescent or Young Adult (AYA) Diagnosed with Hematologic Malignancy
Background: Parents supporting AYAs with blood cancer juggle dual, competing roles as cancer caregiver and parent, which may heighten distress as they feel pulled simultaneously in two opposing directions. Likewise, AYAs encounter paradoxical needs as they revert to being more dependent on their parents to prioritize their survival while their developmental trajectory toward independence is disrupted. Parents need help understanding the underlying tensions they face in caregiving to reduce their distress and promote their connectedness with their AYA. Using a dialectical lens, we identified tensions parents encountered while caregiving in three contexts (clinical, family, and online communication) to inform a targeted psychosocial intervention. Methods: In partnership with The Leukemia & Lymphoma Society, we recruited 20 parents for in-depth interviews. Parents cared for adolescents aged 15–18 (n = 10) or emerging adults aged 19–29 (n = 10) diagnosed >3 months prior and in active treatment or within 2 years since treatment ended. Transcripts were thematically analyzed. Results: Parents described four ongoing tensions they needed to negotiate as they cared for their AYA: (1) being the driver versus passenger in their child’s care; (2) coping with cancer together as a family versus separately; (3) deciding to reveal versus conceal information; and (4) expecting normative developmental and disease trajectories versus disrupted trajectories. These tensions characterize the complex caregiving “dance” parents navigate in all three care contexts. Conclusions: Psychosocial education can normalize these tensions for parents to promote healthier coping and reduce distress while enhancing connectedness with their AYA. As caregiver–patient outcomes are interrelated, it may improve AYAs’ well-being.