Abstract
Objective: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. Methods: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. Results: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. Conclusions: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 1354-1364 |
| Number of pages | 11 |
| Journal | Psycho-oncology |
| Volume | 31 |
| Issue number | 8 |
| DOIs | |
| State | Published - Aug 2022 |
Funding
The authors would like to thank the caregivers for their participation in this study; we are grateful to have had this opportunity to learn about their experiences with cancer‐related financial burden. We also want to acknowledge Dr. Sharon Castellino of the Aflac Cancer & Blood Disorders Center for her support of this project and Nicole Puccinelli‐Ortega from the Q‐PRO Shared Resource of the WFBCCC for her dedicated work on this project. Research reported in this publication was supported by the NCI of the National Institutes of Health under award number R01CA218398 (PI: Salsman). This research was also supported in part by the Qualitative and Patient‐Reported Outcomes Shared Resource of the WFBCCC's NCI Cancer Center Support Grant P30CA012197 and the Wake Forest Clinical and Translational Science Institute's National Center for Advancing Translational Sciences (NCATS) Grant ULTR001420. Chandylen Nightingale's work on this was in part supported by the NCATS under award number KL2TR001421. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Keywords
- adolescent
- adolescent and young adult oncology
- cancer
- caregiver
- financial burden
- financial distress
- financial toxicity
- oncology
- psycho-oncology
- young adult
ASJC Scopus subject areas
- Experimental and Cognitive Psychology
- Oncology
- Psychiatry and Mental health
