Financial burden for caregivers of adolescents and young adults with cancer.

Autor: Nightingale CL; Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston Salem, NC, USA., Canzona MR; Department of Communication, Wake Forest University, Winston Salem, NC, USA., Danhauer SC; Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston Salem, NC, USA., Reeve BB; Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA., Howard DS; Department of Internal Medicine, Section on Hematology and Oncology, Wake Forest School of Medicine, Winston Salem, NC, USA., Tucker-Seeley RD; Leonard Davis School of Gerontology, University of Southern California, Los Angeles, CA, USA., Golden SLS; Goldsmith Research Group, Winston Salem, NC, USA., Little-Greene D; Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston Salem, NC, USA., Roth ME; Department of Pediatrics, MD Anderson Cancer Center, Houston, TX, USA., Victorson DE; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA., Salsman JM; Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston Salem, NC, USA.
Jazyk: angličtina
Zdroj: Psycho-oncology [Psychooncology] 2022 Aug; Vol. 31 (8), pp. 1354-1364. Date of Electronic Publication: 2022 Apr 20.
DOI: 10.1002/pon.5937
Abstrakt: 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.
(© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)
Databáze: MEDLINE
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