Bereaved Parents' Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study.

Autor: Alexander AK; Carleton College, Northfield, MN., Martinez I; Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL., Tefera R; Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL., Beauchemin MP; School of Nursing, Columbia University Irving Medical Center, New York, NY., Lawhon VM; Department of Medicine, School of Medicine, University of Alabama at Birmingham, Birmingham, AL., Nichols A; Division of Gerontology, Geriatrics, and Palliative Care, University of Alabama at Birmingham, Birmingham, AL., Rosenberg AR; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA; Department of Pediatrics, Boston Children's Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA., Bhatia S; Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL; Pediatric Hematology/Oncology, Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL., Johnston EE; Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL; Pediatric Hematology/Oncology, Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL. Electronic address: eejohnston@uabmc.edu.
Jazyk: angličtina
Zdroj: The Journal of pediatrics [J Pediatr] 2025 Jan; Vol. 276, pp. 114269. Date of Electronic Publication: 2024 Aug 30.
DOI: 10.1016/j.jpeds.2024.114269
Abstrakt: Objective: To explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity.
Study Design: We performed secondary analysis of semistructured interviews of bereaved parents' perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior. Quotes related to FT were identified and iteratively grouped into themes without an a priori framework.
Results: Most participants were non-Hispanic White (30; 55%), and the most common diagnoses were noncentral nervous system solid tumors (16; 33%) and central nervous system tumors (16; 33%). Children died at a mean age of 11 and a median of 4 years prior to the interview. Almost all parents (52; 95%) discussed FT, including all Black and Hispanic parents. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as well as work disruptions as contributors to FT at EOL. Barriers to financial wellness included navigating insurance, insufficient financial support from the hospital, and long-term FT from treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness. In some cases, finances prevented families from accessing nursing services and mental health support and affected EOL decisions.
Conclusions: As FT affected almost all families' EOL experience, pediatric oncology programs should routinely screen for FT at EOL and ensure they have the resources to respond.
Competing Interests: Declaration of Competing Interest This project was supported by grants to E.J. from Alex's Lemonade Stand and the Kaul Pediatric Research Institute. The other authors declare no conflicts of interest. The manuscript's abstract was previously featured in The American Society of Clinical Oncology (ASCO) journal as an ASCO meeting abstract from the 2023 ASCO Quality Care Symposium.
(Copyright © 2024 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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