Financial burden for caregivers of adolescents and young adults with cancer

被引：21

作者：

Nightingale, Chandylen L. ^{[1
]}

Canzona, Mollie R. ^{[2
]}

Danhauer, Suzanne C. ^{[1
]}

Reeve, Bryce B. ^{[3
]}

Howard, Dianna S. ^{[4
]}

Tucker-Seeley, Reginald D. ^{[5
]}

Golden, Shannon L. S. ^{[6
]}

Little-Greene, Denisha ^{[1
]}

Roth, Michael E. ^{[7
]}

Victorson, David E. ^{[8
]}

Salsman, John M. ^{[1
]}

机构：

[1] Wake Forest Sch Med, Dept Social Sci & Hlth Policy, Winston Salem, NC 27157 USA

[2] Wake Forest Univ, Dept Commun, Winston Salem, NC 27101 USA

[3] Duke Univ, Dept Populat Hlth Sci, Sch Med, Durham, NC USA

[4] Wake Forest Sch Med, Dept Internal Med, Sect Hematol & Oncol, Winston Salem, NC 27157 USA

[5] Univ Southern Calif, Leonard Davis Sch Gerontol, Los Angeles, CA 90007 USA

[6] Goldsmith Res Grp, Winston Salem, NC USA

[7] MD Anderson Canc Ctr, Dept Pediat, Houston, TX USA

[8] Northwestern Univ, Feinberg Sch Med, Dept Med Social Sci, Chicago, IL 60611 USA

来源：

PSYCHO-ONCOLOGY | 2022年 / 31卷 / 08期

基金：

美国国家卫生研究院;

关键词：

adolescent; adolescent and young adult oncology; cancer; caregiver; financial burden; financial distress; financial toxicity; oncology; psycho-oncology; young adult; FAMILY CAREGIVERS; CARE; HARDSHIP; HEALTH;

D O I：

10.1002/pon.5937

中图分类号：

R73 [肿瘤学];

学科分类号：

100214 ;

摘要：

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.

引用

页码：1354 / 1364

页数：11