“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
Open accessAbstract
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.
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The Western literature emphasizes the benefits of open communication within families and between patients and health care providers for emotional well-being and informed decision-making.
“In contrast, the Western literature emphasizes the benefits of open communication within families and between patients and health care providers for emotional well-being and informed decision-making.”
From The burdens, coping strategies, and unmet needs of family caregivers of Chinese patients with lymphoma receiving commercial CAR-T-cell therapy: A qualitative study (2026) · cites this paper as [62]
The Discussion (section 4; page unavailable) recommends communication skills across family and clinical contexts to improve decision-making and emotional coping. But the Results (section 3.3; page unavailable) describe a tension rather than an unqualified benefit of openness: parents sometimes withheld distressing information to protect their child’s psychological well-being. The paper’s findings concern parents caring for adolescents or young adults with blood cancer, not Western literature generally. (LLM, conf=0.84)
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- Authors
- Mullis, M. D., Bylund, C. L., Bagautdinova, D., Bryan, E. G., Sae-Hau, M., Weiss, E. S., Lagmay, J. P., & Fisher, C. L.
- Affiliations
- University of Florida Health (US)
- Wayne State University (US)
- The Leukemia & Lymphoma Society, Washington, DC 20005, USA
- Blood Cancer United (US)
- Corresponding author
- Fisher, Carla L.
- ORCID
- Venue
- Cancers
- Publisher
- MDPI AG
- Published
- 2025-04-12
- Volume
- 17
- Issue
- 8
- Pages
- 1299
- ISSN
- 2072-6694 (ISSN-L)
- PMC
- PMC12026285
- OpenAlex
- W4409440029
- Cited by
- 4
- References
- 38
- Citations by year
- 2026: 3 · 2025: 1
- FWCI
- 6.09
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Cancers (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Funders
- The Leukemia & Lymphoma Society (HSR9028-24)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- parental care, parent-child relationship, caregiver distress, family coping, disclosure of illness, developmental disruption, psychosocial interventions, online communication, parent-child connectedness, psychosocial education
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