Caregivers' Perspectives on Changes in Family Life During B-ALL Therapy: A Qualitative Study From the Children's Oncology Group

Alexandra Dreyzin, Pediatric Oncology Branch and Center for Cellular Engineering, National Institutes of Health Clinical Center, Bethesda, Maryland, USA.
Megan Ware, Department of Kinesiology, Health Promotion, and Recreation, University of North Texas, Denton, Texas, USA.
Katrina Stumbras, Department of Pediatrics, Children's National Hospital, Washington, District of Columbia, USA.
John Kairalla, Department of Biostatistics, Colleges of Medicine and Public Health & Health Professions, University of Florida, Gainesville, Florida, USA.
Emily Hibbitts, Department of Biostatistics, Colleges of Medicine and Public Health & Health Professions, University of Florida, Gainesville, Florida, USA.
Brenna Mossman, Lombardi Comprehensive Cancer Center, Georgetown University, Washington, District of Columbia, USA.
Lyn Balsamo, Department of Pediatrics, Yale University School of Medicine, New Haven, Connecticut, USA.
Rozalyn Rodwin, Department of Pediatrics, Yale University School of Medicine, New Haven, Connecticut, USA.
Kirsten K. Ness, Department of Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Claire C. Conley, Lombardi Comprehensive Cancer Center, Georgetown University, Washington, District of Columbia, USA.
Elizabeth Raetz, Perlmutter Cancer Center and Department of Pediatrics, NYU Langone Medical Center, New York, New York, USA.
Meenakshi Devidas, Department of Global Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Lillian Sung, Department of Paediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada.
Mignon Loh, Ben Towne Center for Childhood Cancer and Blood Disorders Research, Seattle Children's Research Institute and the Department of Pediatrics, Seattle Children's Hospital, Fred Hutch Cancer Center, University of Washington, Seattle, Washington, USA.
Stephen P. Hunger, Department of Pediatrics and the Center for Childhood Cancer Research, Children's Hospital of Philadelphia and the Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Reuven J. Schore, Division of Oncology, Center for Cancer and Blood Disorders, Children's National Hospital, Washington, District of Columbia, USA.
Anne Angiolillo, Servier Pharmaceuticals, Boston, Massachusetts, USA.
Nina Kadan-Lottick, Lombardi Comprehensive Cancer Center, Georgetown University, Washington, District of Columbia, USA.

Document Type

Journal Article

Publication Date

9-19-2025

Journal

Pediatric blood & cancer

DOI

10.1002/pbc.32057

Keywords

family life; financial; leukemia; parent perspective; quality of life; school; work

Abstract

BACKGROUND: Treatment of pediatric B-acute lymphoblastic leukemia (B-ALL) impacts both patients and their caregivers. An understanding of family functioning during therapy can inform family-centered care. We aimed to prospectively identify negative and positive changes in family life as perceived by caregivers throughout ALL therapy. METHODS: Caregivers of children aged ≥4 years with average-risk B-ALL enrolled on the Children's Oncology Group trial AALL0932 who consented to an ancillary study were asked: "How has family life changed since your child's diagnosis of leukemia for the better or for the worse?" Written free responses were collected at approximately 2, 8, 17, 26 (end of therapy for females), and 38 (end of therapy for males) months post-diagnosis. Inductive content analysis was used to create codes, subcategories, and categories. Descriptive statistics were used to characterize the sample and frequencies of reported codes. RESULTS: Overall, 994 responses were collected from caregivers of 468 children across all timepoints. Twenty-seven individual codes were identified, categorized by negative changes (reported by 89% of caregivers) and positive changes (reported by 58% of caregivers). Subcategories of negative changes, including changes in daily routines, work and finance, patient health and care needs, effects on other family members, and emotional changes, were identified across all timepoints, but were most prevalent early in therapy. Importantly, positive changes were also identified, including family support, community support, and changes in outlook. CONCLUSION: This study identifies negative and positive family changes perceived by caregivers of children undergoing B-ALL therapy that can inform future interventions to better support families.

Department

Pediatrics

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