TY - JOUR
T1 - Novel Framework of Financial Hardship in Childhood Cancer
T2 - Incorporating Stakeholder Perspectives
AU - Ritter, Julie
AU - de Bragança, João
AU - Auste, Carmen
AU - Mendez, Alejandra
AU - Cohen, Phillip D.
AU - Fajardo, Andrés Felipe
AU - Loggetto, Patrícia
AU - Emília de Sá Rodrigues, Karla
AU - Essue, Beverley M.
AU - Knaul, Felicia M.
AU - Malone, Sara M.
AU - Quast, Troy
AU - Kirby, Russell S.
AU - Steliarova-Foucher, Eva
AU - Huang, I. Chan
AU - Meheus, Filip
AU - Bhakta, Nickhill
N1 - Publisher Copyright:
© 2024 by American Society of Clinical Oncology.
PY - 2024/8/1
Y1 - 2024/8/1
N2 - PURPOSE Although financial hardship in childhood cancer contributes to poor outcomes, no standardized tool to assess its impact exists. Existing methods are heterogeneous and designed using high-income country (HIC), adult perspectives. This project aimed to construct a stakeholder-informed conceptual framework of financial hardship in childhood cancer with global relevancy. METHODS Group concept mapping, a participatory mixed-methods approach, was used. Participants were parents or caregivers of a child with cancer, childhood cancer survivors, and clinical or nonclinical support personnel, fluent in English, Spanish, or Portuguese. A representative panel established a comprehensive list of relevant items. Participants individually sorted these items into concepts and then rated each item for impact using a four-point Likert scale. Multidimensional scaling and hierarchical cluster analysis identified concepts. Descriptive statistics were calculated for impact ratings. RESULTS One fourth (21/80) of participants were parents/caregivers or childhood cancer survivors. Participants worked in clinical (44/80), charity/volunteer (27/80), and other nonclinical (13/80) roles. Of the 41 represented countries, 78.0% (32) were low- and middle-income countries (LMICs). Conceptual themes spanned six distinct clusters: medical, nonmedical, assistance and support, treatment impact, family impact, and caregiver impact. These were distinct in composition compared with an existing framework for adult oncology. Caregiver impact (mean, 3.39) and treatment impact (mean, 3.29) were the highest rated clusters, and impact ratings were higher in LMICs compared with HICs. CONCLUSION We developed a framework for financial hardship in childhood cancer that reflects the voices of stakeholders, including parents and caregivers, from diverse global contexts. The findings lay a foundation for the development and validation of tools to systematically assess financial hardship in families of children with cancer and inform effective policies and interventions.
AB - PURPOSE Although financial hardship in childhood cancer contributes to poor outcomes, no standardized tool to assess its impact exists. Existing methods are heterogeneous and designed using high-income country (HIC), adult perspectives. This project aimed to construct a stakeholder-informed conceptual framework of financial hardship in childhood cancer with global relevancy. METHODS Group concept mapping, a participatory mixed-methods approach, was used. Participants were parents or caregivers of a child with cancer, childhood cancer survivors, and clinical or nonclinical support personnel, fluent in English, Spanish, or Portuguese. A representative panel established a comprehensive list of relevant items. Participants individually sorted these items into concepts and then rated each item for impact using a four-point Likert scale. Multidimensional scaling and hierarchical cluster analysis identified concepts. Descriptive statistics were calculated for impact ratings. RESULTS One fourth (21/80) of participants were parents/caregivers or childhood cancer survivors. Participants worked in clinical (44/80), charity/volunteer (27/80), and other nonclinical (13/80) roles. Of the 41 represented countries, 78.0% (32) were low- and middle-income countries (LMICs). Conceptual themes spanned six distinct clusters: medical, nonmedical, assistance and support, treatment impact, family impact, and caregiver impact. These were distinct in composition compared with an existing framework for adult oncology. Caregiver impact (mean, 3.39) and treatment impact (mean, 3.29) were the highest rated clusters, and impact ratings were higher in LMICs compared with HICs. CONCLUSION We developed a framework for financial hardship in childhood cancer that reflects the voices of stakeholders, including parents and caregivers, from diverse global contexts. The findings lay a foundation for the development and validation of tools to systematically assess financial hardship in families of children with cancer and inform effective policies and interventions.
UR - http://www.scopus.com/inward/record.url?scp=85203117206&partnerID=8YFLogxK
U2 - 10.1200/GO.24.00093
DO - 10.1200/GO.24.00093
M3 - Article
C2 - 39208390
AN - SCOPUS:85203117206
SN - 2687-8941
VL - 10
JO - JCO Global Oncology
JF - JCO Global Oncology
M1 - e2400093
ER -