The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden
Siminoff, Laura A. Wilson-Genderson, Maureen Chwistek, Marcin Thomson, Maria
Siminoff, Laura A.
Wilson-Genderson, Maureen
Chwistek, Marcin
Thomson, Maria
Citations
Altmetric:
Genre
Journal article
Date
2024-04-23
Advisor
Committee member
Department
Social and Behavioral Sciences
Permanent link to this record
Collections
Research Projects
Organizational Units
Journal Issue
DOI
https://doi.org/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.
Description
Citation
Laura A Siminoff, Maureen Wilson-Genderson, Marcin Chwistek, Maria Thomson, The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden, The Oncologist, Volume 29, Issue 7, July 2024, Pages 629–637, https://doi.org/10.1093/oncolo/oyae069
Citation to related work
Oxford University Press (OUP)
Has part
The Oncologist, Vol. 29, Iss. 7
ADA compliance
Embedded videos
License
Attribution-NonCommercial CC BY-NC