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. 2022 Aug;31(8):1354-1364.
doi: 10.1002/pon.5937. Epub 2022 Apr 20.

Financial burden for caregivers of adolescents and young adults with cancer

Chandylen L Nightingale  1 , Mollie R Canzona  2 , Suzanne C Danhauer  1 , Bryce B Reeve  3 , Dianna S Howard  4 , Reginald D Tucker-Seeley  5 , Shannon L S Golden  6 , Denisha Little-Greene  1 , Michael E Roth  7 , David E Victorson  8 , John M Salsman  1
Affiliations

Financial burden for caregivers of adolescents and young adults with cancer

Chandylen L Nightingale et al. Psychooncology. 2022 Aug.

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.

Keywords: adolescent; adolescent and young adult oncology; cancer; caregiver; financial burden; financial distress; financial toxicity; oncology; psycho-oncology; young adult.

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Conflict of interest statement

The authors have no conflicts of interest, financial or otherwise, related to the content of this manuscript.

Figures

FIGURE 1
FIGURE 1
Adapted conceptual model of financial burden,
See this image and copyright information in PMC

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