通过与一个服务农村和少数族裔家庭的社区组织合作，识别儿童癌症幸存者的经济毒性经历。

Identifying the Financial Toxicity Experiences of Childhood Cancer Survivors Through Partnership With a Community Organization Serving Rural and Minoritized Families.

作者信息

Benedict Catherine, Bloomer Kelley, Billman Elle, Smith Mary, Boynton Heidi, Schapira Lidia, Smith Stephanie M

机构信息

Department of Psychiatry and Behavioral Science, Stanford University School of Medicine, Palo Alto, California, USA.

Stanford Cancer Institute, Stanford, California, USA.

出版信息

Psychooncology. 2025 Mar;34(3):e70120. doi: 10.1002/pon.70120.

DOI:10.1002/pon.70120

PMID:40097346

Abstract

BACKGROUND

Financial toxicity (FT) refers to cancer-related economic distress and hardship, and disproportionately affects adolescent/young adult (AYA) survivors and minoritized groups. This study explored the FT experiences of AYA survivors of childhood cancer and their parents, and the perspective of staff members of a community-based cancer support organization in a rural region with majority Hispanic/Latino (H/L) residents and high rates of non-English language preference.

METHODS

A needs assessment study was conducted in partnership with Jacob's Heart, a nonprofit organization that serves predominantly H/L families of childhood cancer in a rural region in California. English- and Spanish-speaking AYA survivors, parents, and Jacob's Heart staff members completed semi-structured interviews. Qualitative data were analyzed using an applied thematic analysis approach.

RESULTS

Participants included 12 AYAs, 11 parents, and 7 organization staff. Material hardship was characterized by direct and indirect medical costs (e.g., time, transportation), which impacted parents' employment, required balancing caregiving and financial needs, and caused economic strain. Behavioral effects of FT included adaptations to meet basic needs; cost-coping behaviors included skipping medical visits. Parents and survivors experienced financial stress and worry, exacerbated by disruption in parents' employment and income, transportation pressures of living in a rural area, challenges obtaining or maintaining insurance coverage, and lack of a safety net. Support needs and resources were described.

CONCLUSIONS

AYA survivors of childhood cancer and their parents experience long-lasting FT across multiple domains, which is exacerbated by socioeconomic and structural factors. Interventions targeting FT should partner with community-based organizations to reach vulnerable populations.

摘要

背景

经济毒性（FT）是指与癌症相关的经济困境和艰难处境，对青少年/青年（AYA）幸存者及少数族裔群体的影响尤为严重。本研究探讨了儿童癌症AYA幸存者及其父母的经济毒性经历，以及一个以社区为基础的癌症支持组织的工作人员的观点，该组织位于一个以西班牙裔/拉丁裔（H/L）居民为主且非英语语言偏好率高的农村地区。

方法

与雅各布之心合作开展了一项需求评估研究，雅各布之心是一家非营利组织，主要为加利福尼亚州一个农村地区的儿童癌症H/L家庭提供服务。讲英语和西班牙语的AYA幸存者、父母以及雅各布之心的工作人员完成了半结构化访谈。使用应用主题分析方法对定性数据进行了分析。

结果

参与者包括12名AYA、11名父母和7名组织工作人员。物质困难的特点是直接和间接医疗费用（如时间、交通），这影响了父母的就业，需要平衡照顾需求和经济需求，并造成经济压力。经济毒性的行为影响包括为满足基本需求而做出的调整；成本应对行为包括跳过医疗就诊。父母和幸存者经历了经济压力和担忧，父母就业和收入中断、农村地区生活的交通压力、获得或维持保险覆盖的挑战以及缺乏安全网使这种情况更加恶化。描述了支持需求和资源。