Affiliation:
1. The Phyllis F. Cantor Center for Research in Nursing and Patient Care Services Dana‐Farber Cancer Institute Boston Massachusetts USA
2. Department of Pediatrics Harvard Medical School Boston Massachusetts USA
3. Biostatistics Unit Faculty of Health Deakin University Geelong Victoria Australia
4. Department of Pediatrics Boston Children’s Hospital Boston Massachusetts USA
5. Department of Pediatrics Pediatric Palliative Care Research Massachusetts General Hospital Boston Massachusetts USA
6. Division of General Pediatrics Children's Hospital of Philadelphia Philadelphia Pennsylvania USA
7. Division of Oncology Children's Hospital of Philadelphia Philadelphia Pennsylvania USA
8. Palliative Care Texas Children’s Hospital Houston Texas USA
9. Department of Psychosocial Oncology and Palliative Care Dana‐Farber Cancer Institute Boston Massachusetts USA
10. Great Ormond Street Hospital for Children London UK
11. Department of Pediatrics Massachusetts General Hospital Boston Massachusetts USA
12. Department of Pediatrics Brigham and Women’s Hospital Boston Massachusetts USA
Abstract
AbstractBackgroundThe prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described.MethodsParents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other). Associations between HMH and parent distress measured by the State‐Trait Anxiety Inventory–State and the 10‐item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders.ResultsAmong 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non‐White race, Spanish‐speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid‐only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7–14.7]) and depression (MD, 4.1 [95% CI, 1.7–6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8–18.5]; depression: MD, 4.9 [95% CI, 1.3–8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2–18.9]; depression: MD, 4.8 [95% CI, 1.8–7.8]).ConclusionsHMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress.Plain Language Summary
In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association.
Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing.