Journal
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
Volume 56, Issue 1, Pages 98-106Publisher
ELSEVIER SCIENCE INC
DOI: 10.1016/j.jpainsymman.2018.03.017
Keywords
Palliative medicine; palliative care; caregivers; global health; Africa South of the Sahara; South Africa
Funding
- Amgen
- Sanofi
- Merck
- Novartis
- MSD
- Pfizer
- Teva
- Otsuka
- UBC
- Hospira
- EHE International
- National Cancer Institute [T32 CA094061, R35 CA197730, R01 CA192627]
- CCSG supplemental award [P30 CA13696]
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Context. In sub-Saharan Africa, late diagnosis with cancer is common. Many dying patients rely on family members for care; little is known about the challenges African informal caregivers face. Objectives. To better understand the challenges of informal caregivers at the end of life in South Africa, both at home and in inpatient facilities. Methods. We included advanced cancer patients and caregivers from a public hospital in Johannesburg, South Africa. Study nurses interviewed patients and caregivers about their experiences. Using univariate and multivariate analyses, we determined the factors associated with greater caregiver difficulty, focusing on patients dying at home vs. in inpatient facilities. Results. Among 174 informal caregivers, 62 (36%) reported a lot of challenges. These caregivers struggled most with keeping the patient clean (16%) and with patient interactions (34%). Symptoms associated with greater difficulty included pain (odds ratio [OR] 2.4 [95% CI 1.2-4.7]), urinary incontinence (OR 2.3 [95% CI 1.1-4.9]), fecal incontinence (OR 2.4 [95% CI 1.0-5.7]), insomnia (OR 2.9 [95% CI 1.3-6.9]), fatigue (OR 6.3 [95% CI 1.8-21.6]), extremity weakness (OR 2.9 [95% CI 1.3-6.9]), shame (OR 4.2 [95% CI 1.5-12.0]), and sadness (OR 2.3 [95% CI 1.1-4.8]). Caregivers of patients dying at home reported the greatest difficulty with patients' physical symptoms; caregivers of those dying in facilities reported the greatest difficulty with emotional symptoms. Conclusion. Informal caregivers of patients dying at home reported challenges with practical functional care; this effect was reduced in the inpatient setting. Skills training for these caregivers could relieve some of this burden. (C) 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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