Identifying the Financial Toxicity Experiences of Childhood Cancer Survivors Through Partnership With a Community Organization Serving Rural and Minoritized Families.
Catherine Benedict, Kelley Bloomer, Elle Billman, Mary Smith, Heidi Boynton, Lidia Schapira, Stephanie M Smith
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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.
期刊介绍：
Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.
This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues.
Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.
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