Factors Influencing Family Burden in Pediatric Hematology/Oncology Encounters

Abstract

Journal of Patient-Centered Research and Reviews (JPCRR) is an open access, peer-reviewed medical journal focused on disseminating scholarly works devoted to improving patient-centered care practices, health outcomes, and the patient experience. www.aurora.org/jpcrr 243 Original Research Purpose Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families' subjective experience of this care-related burden mediates the relationship between cost and healthrelated outcomes. While financial costs are well described for families of pediatric hematology/ oncology patients, it is unclear how cost and other factors each contribute to families' overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden. Methods This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers of pediatric hematology/ oncology patients. Respondents rated their perception of burden associated with that day's medical encounter on a 5-point Likert scale. The questionnaire included an open-ended prompt for caregivers about areas they deemed most burdensome. Primary themes were extracted and categorized. Results A total of 278 outpatient and 42 inpatient caregivers participated. Six thematic categories emerged: logistics, life disruption, care delivery system, parking, financial burden, and emotional burden. Outpatient caregivers reported more burden than inpatient caregivers for the first three categories, while inpatient caregivers reported more burden for the last three. Salient subthemes associated with higher and lower overall burden were identified in each theme category. Conclusions These data establish theme categories for future study of caregiver-perceived burden in pediatric hematologic/oncologic encounters, demonstrate that certain components of cost contribute disproportionately to caregivers' overall sense of care-related burden, and identify areas within each of the 6 burden categories that can be best targeted to alleviate caregiver burden.

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“…It is important to determine and investigate the perceived burden of the families of pediatric cancer patients in the care process (Abrams et al, 2019). The CBSFC-CC scale was developed specifically for the family caregivers of children with cancer.…”

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“…Out‐of‐the‐pocket expenses show to be considerably high 15 . Additionally, such financial stressors contribute greatly to family burden and emotional distress 16 …”

“…15 Additionally, such financial stressors contribute greatly to family burden and emotional distress. 16 T A B L E 2 General results of the socio-economic questionnaire Due to the rigorous care that children and adolescents with cancer require, many of their parents, especially mothers must leave their work or opt for informal sources of employment, which makes their economic situation more precarious especially in emergency contexts. This is a common situation for many families of children with cancer in all countries.…”

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“…95,96 We advocate for clinical trial designs that considers incorporation of telehealth for follow-up and surveillance. 97 This may increase the inclusion of historically neglected groups 96 while simultaneously reducing associated costs, 98,99 burdens, 96,100,101 and carbon emissions associated with transportation. Furthermore, we invite investigators to consider partnership with local oncologists in the delivery of chemotherapy or radiation on clinical trials.…”