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

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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.

Abstract

This study aimed to comprehensively understand the burden experienced by caregivers providing home-based, end-of-life care to patients with cancer.

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Most cited references 42

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Centering predictor variables in cross-sectional multilevel models: a new look at an old issue.

Craig K Enders, Davood Tofighi (2007)

Appropriately centering Level 1 predictors is vital to the interpretation of intercept and slope parameters in multilevel models (MLMs). The issue of centering has been discussed in the literature, but it is still widely misunderstood. The purpose of this article is to provide a detailed overview of grand mean centering and group mean centering in the context of 2-level MLMs. The authors begin with a basic overview of centering and explore the differences between grand and group mean centering in the context of some prototypical research questions. Empirical analyses of artificial data sets are used to illustrate key points throughout. The article provides a number of practical recommendations designed to facilitate centering decisions in MLM applications. Copyright 2007 APA, all rights reserved.

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The Zarit Burden Interview: a new short version and screening version.

M Bedard, D W Molloy, L Squire … (2001)

The purpose of the study was to develop a short and a screening version of the Zarit Burden Interview (ZBI) that would be suitable across diagnostic groups of cognitively impaired older adults, and that could be used for cross-sectional, longitudinal, and intervention studies. We used data from 413 caregivers of cognitively impaired older adults referred to a memory clinic. We collected information on caregiver burden with the 22-item ZBI, and information about dependence in activities of daily living (ADLs) and the frequency of problem behaviors among care recipients. We used factor analysis and item-total correlations to reduce the number of items while taking into consideration diagnosis and change scores. We produced a 12-item version (short) and a 4-item version (screening) of the ZBI. Correlations between the short and the full version ranged from 0.92 to 0.97, and from 0.83 to 0.93 for the screening version. Correlations between the three versions and ADL and problem behaviors were similar. We further investigated the behavior of the short version with a two-way analysis of variance and found that it produced identical results to the full version. The short and screening versions of the ZBI produced results comparable to those of the full version. Reducing the number of items did not affect the properties of the ZBI, and it may lead to easier administration of the instrument.

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Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

Bárbara Gomes, Natalia Calanzani, Vito Curiale … (2013)

Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. Authors' conclusions The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. PLAIN LANGUAGE SUMMARY Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services make to people's chances of dying at home, but also to other important aspects for patients towards the end of life, such as symptoms (e.g. pain) and family distress. We also compared the impact on the costs with care. On the basis of 23 studies including 37,561 patients and 4042 family caregivers, we found that when someone with an advanced illness gets home palliative care, their chances of dying at home more than double. Home palliative care services also help reduce the symptom burden people may experience as a result of advanced illness, without increasing grief for family caregivers after the patient dies. In these circumstances, patients who wish to die at home should be offered home palliative care. There is still scope to improve home palliative care services and increase the benefits for patients and families without raising costs.

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Author and article information

Contributors

Laura A Siminoff:

ORCID: https://orcid.org/0000-0002-6775-665X

Maureen Wilson-Genderson:

ORCID: https://orcid.org/0000-0002-6361-358X

Marcin Chwistek:

ORCID: https://orcid.org/0000-0003-4036-8232

Maria Thomson:

ORCID: https://orcid.org/0000-0002-5729-8720

Journal

Journal ID (nlm-ta): Oncologist

Journal ID (iso-abbrev): Oncologist

Journal ID (publisher-id): oncolo

Title: The Oncologist

Publisher: Oxford University Press (US )

ISSN (Print): 1083-7159

ISSN (Electronic): 1549-490X

Publication date Collection: July 2024

Publication date (Electronic): 23 April 2024

Publication date PMC-release: 23 April 2024

Volume: 29

Issue: 7

Pages: 629-637

Affiliations

College of Public Health, Social and Behavioral Sciences, Temple University , Philadelphia, PA, United States

Fox Chase Cancer Center/Temple University Health , Philadelphia, PA, United States

Department of Health Behavior and Policy, School of Population Health, Virginia Commonwealth University , Richmond, VA, United States

Author notes

Corresponding author: Laura Siminoff, PhD, College of Public Health, Social and Behavioral Sciences, Temple University, 1301 Cecil B. Moore Avenue, Philadelphia, PA 19122, USA ( lasiminoff@ 123456temple.edu ).

Author information

Laura A Siminoff https://orcid.org/0000-0002-6775-665X

Maureen Wilson-Genderson https://orcid.org/0000-0002-6361-358X

Marcin Chwistek https://orcid.org/0000-0003-4036-8232

Maria Thomson https://orcid.org/0000-0002-5729-8720

Article

Publisher ID: oyae069

DOI: 10.1093/oncolo/oyae069

PMC ID: 11224987

PubMed ID: 38652165

SO-VID: 57a7fb74-d90f-442a-89d1-965088c52b77

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License ( https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.

History

Date received : 08 November 2023

Date accepted : 20 March 2024

Page count

Pages: 9

Funding

Funded by: NCI, DOI 10.13039/100000054;

Award ID: R01CA196576

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

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Abstract

Introduction

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Conclusions

Abstract

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Karger: Oncology

Most cited references 42

Centering predictor variables in cross-sectional multilevel models: a new look at an old issue.

The Zarit Burden Interview: a new short version and screening version.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

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