ArticleJournal of pain and symptom management2022
Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study.
Article in Journal of pain and symptom management, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed, 13 citations in OpenAlex.
- Bedbound Status During the Last Year of Life Among Community-Dwelling Older Adults.JAMA network open · 2025Article
- Defining dyadic cancer pain concordance using participant-initiated interactions with a remote health monitoring system.JAMIA open · 2025Article
- A Mixed Methods Analysis of Standardized Documentation of Serious Illness Conversations Within an Electronic Health Record Module During Hospitalization.The American journal of hospice & palliative care · 2025Article
- Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.The American journal of hospice & palliative care · 2024Article
- Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.JMIR human factors · 2024Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
contextIn the United States, 30% of all deaths occur at home. Effective symptom management is integral to quality end-of-life (EOL) care. Family caregivers play a major role in EOL symptom management. Recent federal policies emphasize the need to improve training and support for family caregivers.
objectivesIn a nationally representative sample: 1) Characterize the population of caregivers assisting with and reporting difficulty in symptom management at the end of life; and 2) Assess caregiver and care recipient characteristics associated with caregiver report of difficulty.
methodsCross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiving. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty.
resultsCaregivers (n = 214) were mean age 57.1 years, 74% female, and 86% white non-Hispanic. Over 2 million family caregivers provided assistance with symptom management in the last month of life in 2017; 78% reported difficulty. Non-Hispanic Black caregivers (aOR 0.24, 95% CI 0.08-0.75), Hispanic caregivers (0.13, 0.03-0.56), and caregivers with lower than high school education (0.26, 0.11-0.63) were less likely to report difficulty. Caregivers of care recipients who received paid care (3.37, 1.30-8.69) were more likely to report difficulty. Receipt of training and support services (1.80, 0.83-3.93) and hospice (1.83, 0.82-4.07) were not associated with caregiver report of difficulty.
conclusionThese findings underscore the need to improve training and support for family caregivers in EOL symptom management.
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Registered trials
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