Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study

被引:5
作者
Mather, Harriet [1 ,4 ]
Kleijwegt, Hannah [1 ]
Bollens-Lund, Evan [1 ]
Kelley, Amy S. [2 ]
Ornstein, Katherine A. [3 ]
机构
[1] Icahn Sch Med Mt Sinai, Brookdale Dept Geriatr & Palliat Med, New York, NY USA
[2] Icahn Sch Med Mt Sinai, James J Peters VA Med Ctr, Brookdale Dept Geriatr & Palliat Med, Bronx, NY USA
[3] Icahn Sch Med Mt Sinai, Brookdale Dept Geriatr & Palliat Med, Dept Gen Internal Med, New York, NY USA
[4] Brookdale Dept Geriatr & Palliat Med, POB 1070, Annenberg Bldg, One Gustave Levy Pl, New York, NY 10029 USA
关键词
family caregivers; end-of-life care; symptom management; palliative care; hospice; UNPAID CAREGIVERS; NATIONAL PROFILE; OLDER-ADULTS; PAIN; DEATH; PREVALENCE; CANCER;
D O I
10.1016/j.jpainsymman.2022.07.017
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Context. In 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. Objectives. In 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. Methods. Cross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiv-ing. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty. Results. Caregivers (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 -His-panic 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. Conclusion. These findings underscore the need to improve training and support for family caregivers in EOL symptom management. J Pain Symptom Manage 2022;64:513-520. (c) 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
引用
收藏
页码:513 / 520
页数:8
相关论文
共 50 条
[31]   Predictors and Drivers of End-of-Life Medicare Spending Among Older Adults with Solid Tumors: A Population-Based Study [J].
Baird, Courtney E. ;
Wulff-Burchfield, Elizabeth ;
Egan, Pamela C. ;
Hugar, Lee A. ;
Vyas, Ami ;
Trikalinos, Nikolaos A. ;
Liu, Michael A. ;
Olszewski, Adam J. ;
Bantis, Leonidas E. ;
Panagiotou, Orestis A. ;
Belanger, Emmanuelle .
CANCERS, 2025, 17 (06)
[32]   Exploring the lived experience of Chinese family caregivers caring for end-of-life cancer patients at home: a phenomenological study in Singapore [J].
Ang, Seng Hock Martin ;
Poon, Wing Hong Edward ;
Best, Odette ;
Graham, Coralie .
SUPPORTIVE CARE IN CANCER, 2025, 33 (02)
[33]   Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review [J].
Rainsford, Suzanne ;
MacLeod, Roderick D. ;
Glasgow, Nicholas J. ;
Phillips, Christine B. ;
Wiles, Robert B. ;
Wilson, Donna M. .
PALLIATIVE MEDICINE, 2017, 31 (10) :895-912
[34]   Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study [J].
Davies, Nathan ;
Rait, Greta ;
Maio, Laura ;
Iliffe, Steve .
PALLIATIVE MEDICINE, 2017, 31 (08) :726-733
[35]   Patterns of Symptom Management Medication Receipt at End-of-Life Among Medicare Beneficiaries With Lung Cancer [J].
Saphire, Maureen L. ;
Prsic, Elizabeth H. ;
Canavan, Maureen E. ;
Wang, Shi-Yi J. ;
Presley, Carolyn J. ;
Davidoff, Amy J. .
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2020, 59 (04) :767-+
[36]   Family caregivers' administration of medications at the end-of-life in China: a qualitative study [J].
Yang, Fei ;
Wang, Pusheng ;
Tang, Yong ;
Song, Min ;
Jing, Jun ;
Lu, Guijun ;
Wee, Bee .
BMC PALLIATIVE CARE, 2024, 23 (01)
[37]   Bereaved caregivers' satisfaction with end-of-life care [J].
Frame, Abbey ;
Grant, Janie Busby ;
Layard, Elizabeth ;
Scholz, Brett ;
Law, Elly ;
Ranse, Kristen ;
Mitchell, Imogen ;
Chapman, Michael .
PROGRESS IN PALLIATIVE CARE, 2022, 30 (04) :212-220
[38]   Current status of intensive end-of-life care in children with hematologic malignancy: a population-based study [J].
Yotani, Nobuyuki ;
Shinjo, Daisuke ;
Kato, Motohiro ;
Matsumoto, Kimikazu ;
Fushimi, Kiyohide ;
Kizawa, Yoshiyuki .
BMC PALLIATIVE CARE, 2021, 20 (01)
[39]   Caregivers needing care: the unmet needs of the family caregivers of end-of-life cancer patients [J].
Maryam Hashemi ;
Alireza Irajpour ;
Fariba Taleghani .
Supportive Care in Cancer, 2018, 26 :759-766
[40]   End-of-life care for patients with pancreatic cancer in France: a nationwide population-based cohort study [J].
Marchese, Ugo ;
Pauly, Vanessa ;
Pellat, Anna ;
Richa, Yasmina ;
Fond, Guillaume ;
Tzedakis, Stylianos ;
Gaillard, Martin ;
Fuchs, Basile ;
Orleans, Veronica ;
Fuks, David ;
El Amrani, Mehdi ;
Boyer, Laurent .
THERAPEUTIC ADVANCES IN MEDICAL ONCOLOGY, 2025, 17