Journal article
Activating Adolescent and Young Adult Involvement with Cancer Care Responsibilities: A Dyadic Qualitative Study with Caregivers
Journal of adolescent and young adult oncology, v 13(4), pp 683-692
01 Aug 2024
PMID: 38716776
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Purpose: Empowering adolescents and young adult (AYA) patients to be involved in cancer responsibilities (e.g., remembering medications), as opposed to solely relying on caregivers, may have important short- and long-term benefits for development and disease management. This study explored perceptions of AYA engagement with cancer-related responsibilities and plans for transferring these responsibilities from caregivers to AYAs.Methods: A total of 30 AYA-caregiver dyads (including 11 early adolescents, 10 adolescents, and 9 young adults who were receiving chemotherapy and/or radiation) jointly completed a semi-structured interview. Interviews assessed the present allocation of cancer responsibilities within the family, how cancer responsibilities were divided this way, and prompted a dyadic discussion to draft a plan to transfer a responsibility to the AYA in the future. Directed content analysis techniques were used to identify and organize relevant themes.Results: Themes showed that (1) cancer responsibilities were initially assumed "naturally" by caregivers, without much formal discussion; (2) greater AYA involvement in cancer care reflected AYA (e.g., age, willingness) and caregiver factors (e.g., knowledge/skills, anxiety); (3) over time, dyads mutually prioritized AYA engagement with cancer care; and (4) the need for more proactive clinical support with transferring care tasks to AYAs.Discussion: Caregivers play a key role in managing cancer care with or for AYAs, with the allocation of these responsibilities being influenced by several factors that can shift over time. Dyads typically viewed the transfer process as important but desired more clinical support. This reflects a potential self-management care gap to address in future studies and dyadic interventions.
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Details
- Title
- Activating Adolescent and Young Adult Involvement with Cancer Care Responsibilities: A Dyadic Qualitative Study with Caregivers
- Creators
- Alexandra M. Psihogios - Northwestern UniversityLaura Strachan - Swarthmore CollegeMadeline Melch - Children's Hospital of PhiladelphiaAnnisa M. Ahmed - Texas A&M UniversityElise R. Mckelvey - Augusta UniversityAbby Sproch - Swarthmore CollegeDaniella Toto - Children's Hospital of PhiladelphiaSung Choi - University of Michigan
- Publication Details
- Journal of adolescent and young adult oncology, v 13(4), pp 683-692
- Publisher
- Sage
- Number of pages
- 10
- Grant note
- Children's Hospital of Philadelphia Research Institute IRG-21-144-27 / Institutional Research Grant from the American Cancer Society K08CA241335 / National Cancer Institute; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Cancer Institute (NCI)
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- College of Medicine
- Web of Science ID
- WOS:001217328200001
- Scopus ID
- 2-s2.0-85200938452
- Other Identifier
- 991022202517004721
UN Sustainable Development Goals (SDGs)
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Source: SDGs in the Output
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Oncology