Parental perspectives on financial distress during treatment for childhood acute lymphoblastic leukemia: A qualitative report from Children's oncology group (COG) study ACCL20N1CD

Abstract Introduction: Cancer-related financial hardship among families of children with cancer contributes to poor quality of life, psychological distress, and new/worsening household material hardship. Low-income and minoritized populations are at increased risk for financial hardship during pediatric cancer care. Treatment for the most common pediatric cancer, acute lymphoblastic leukemia (ALL) includes more than 2 years of frequent inpatient/outpatient visits, unexpected hospitalizations, many medications, and caregiver work disruptions, placing families at risk for significant financial hardship. There are limited data describing the trajectory of financial distress throughout ALL treatment. We aimed to qualitatively explore parental experiences of financial distress and material hardship during childhood ALL treatment. We specifically aimed to include the voices of individuals historically underrepresented in research. Methods: We conducted an exploratory analysis of preliminary qualitative data from Children's Oncology Group (COG) study ACCL20N1CD: a prospective longitudinal cohort study of parent-reported financial distress during pediatric ALL treatment. The diverse study team included multicultural, bilingual (English and Spanish) healthcare professionals to facilitate cultural and linguistic inclusivity in all aspects of study design, conduct, and analysis. Eligible participants included English- and Spanish-speaking parents of children ages 1-14 years newly diagnosed with ALL at COG National Cancer Institute Community Oncology Research Program (NCORP) practices. Parents completed study surveys at 3 time points: within the first 4-weeks of their child's chemotherapy (T1), at the start of maintenance chemotherapy (T2), and at treatment completion (T3). All parents were invited at study entry to opt-in to 30-min individual semi-structured interviews to be completed between T1 and T3. The interview guide was informed by the study's conceptual model. Interviews were conducted by study members trained in qualitative research methods. Audio-recorded interviews were transcribed verbatim in the source language. Each transcript was analyzed by at least two study members in the source language using directed content analysis with predetermined codes informed by the conceptual framework. Data not fitting predetermined codes were coded inductively. Following individual qualitative analysis, the study team reviewed their findings to reach consensus on final themes. The target was ≥15 interviews, and until data saturation was reached. Results: Among 104 participants enrolled on ACCL20N1CD across 28 COG NCORP practices, 77 (74%) consented to be purposively sampled for optional qualitative interviews and 12 parents have completed interviews to date. All 12 parents self-identified as minoritized race or ethnicity. Most self-identified as Hispanic/Latino (n=10, 83%) and completed the interview in Spanish (n=8, 67%). Interviews revealed that participating parents endorsed financial distress from cancer-related financial hardship, compounded by the stress of the unforeseen ALL diagnosis. As one parent noted, “O sea, es algo totalmente que, uno no espera. Entonces, como, tanto emocional y económicamente, es algo impactante para una familia cuando le diagnostican a un familiar con leucemia.” Parents described multiple family/child financial factors contributing to financial distress, including (1) direct/indirect costs of cancer care alongside, (2) lower income due to work disruptions. Parents emphasized the importance of multiple types of resources, such as clinical social workers and psychologists, referrals to community and government resources, and family financial or other support, that were helpful throughout the treatment. As one parent said, “People, when they hear a child has cancer, they—it's like a sinkhole. You don't know how to get out of there. You need a lot of support; you need a lot of people.” Many parents expressed coping with their distress through spirituality. Conclusion: Parents of children with ALL treated in community settings describe financial distress and the multilayered supports that they rely on to ensure their child received the recommended treatment. Furthermore, we show how historically underrepresented individuals can be successfully engaged in research by assembling a study team of diverse, multilingual healthcare professionals and employing inclusive research practices starting at initial study design.