Enhancing school- and work-related supportive care in adolescent and young adult (AYA) oncology: A qualitative study merging AYA, parent, and clinician perspectives.
Emma Bryan, Kelsey Lunsford, Diliara Bagautdinova, Samantha Reese, Raymond B Mailhot Vega, Carma L Bylund, Maria Sae-Hau, Elisa S Weiss, Joanne P Lagmay, Carla L Fisher
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引用次数: 0
Abstract
Background: Cancer disrupts AYAs' school/work-related opportunities during a developmental phase when learning-related experiences are central to AYAs' growth and future outcomes. The National Comprehensive Cancer Network (NCCN) recommends clinics implement school/work support, but guidance is needed on what types of support to implement feasibly.
Objective: We aimed to understand AYAs' needs by comparing narrative accounts from AYAs, parents, and clinicians.
Methods: A secondary thematic analysis was conducted on two interview study datasets combined to compare three stakeholder groups' experiences: Parents of diagnosed AYAs (age 15-29), AYAs, and clinicians. Data from each group were inductively analyzed and triangulated to capture similarities/differences.
Results: 32 interviews represented three stakeholder groups: 10 AYAs, 15 parents, 7 clinicians. All groups described school/work-related challenges in four areas: advocating for accommodations, losing extracurricular activities, navigating disrupted expected trajectories, and losing peer social connection. Parents and AYAs stressed a positive impact (school/work promoting empowerment) heightening the importance of protecting school/work experiences. Findings highlighted specific supports to implement in each area, with distinct insights made by each stakeholder group.
Conclusions: Findings offer a roadmap to implementing the NCCN's "educational and career services" directive by identifying the types of supports to implement and how. AYAs and families would benefit from oncology teams providing accommodation guidance with integrated clinical advocacy tools, flexible practices that prioritize AYAs' socialization, and psychosocial support for grief coping, social skill development, and career decision making. Prioritizing school/work-related supportive care can be a feasible, patient-centered way to improve quality of life across the AYA cancer trajectory.
期刊介绍：
Here is your single source of integrated information on providing the best psychosocial care possible from the knowledge available from many disciplines.The Journal of Psychosocial Oncology is an essential source for up-to-date clinical and research material geared toward health professionals who provide psychosocial services to cancer patients, their families, and their caregivers. The journal—the first interdisciplinary resource of its kind—is in its third decade of examining exploratory and hypothesis testing and presenting program evaluation research on critical areas, including: the stigma of cancer; employment and personal problems facing cancer patients; patient education.
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