The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden

Laura A Siminoff; Maureen Wilson-Genderson; Marcin Chwistek; Maria Thomson

doi:10.1093/oncolo/oyae069

The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden

Oncologist. 2024 Apr 23:oyae069. doi: 10.1093/oncolo/oyae069. Online ahead of print.

Authors

Laura A Siminoff¹, Maureen Wilson-Genderson¹, Marcin Chwistek², Maria Thomson³

Affiliations

¹ College of Public Health, Social and Behavioral Sciences, Temple University, Philadelphia, PA, United States.
² Fox Chase Cancer Center/Temple University Health, Philadelphia, PA, United States.
³ Department of Health Behavior and Policy, School of Population Health, Virginia Commonwealth University, Richmond, VA, United States.

PMID: 38652165
DOI: 10.1093/oncolo/oyae069

Abstract

Introduction: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time.

Methods: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations.

Results: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective).

Conclusions: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.

Keywords: cancer objective caregiver burden; caregiver stress; end-of-life care; home and community-based care and services; late-stage cancer care; subjective caregiver burden.