Daniel S O'Neil1, Holly G Prigerson2, Keletso Mmoledi3, Mfanelo Sobekwa3, Mpho Ratshikana-Moloko3, Jacob M Tsitsi4, Herbert Cubasch5, Michelle L Wong6, Jones A O Omoshoro-Jones7, Paul E Sackstein8, Craig D Blinderman9, Judith S Jacobson10, Maureen Joffe11, Paul Ruff12, Alfred I Neugut13, Charmaine L Blanchard14. 1. Herbert Irving Comprehensive Cancer Center, College of Physicians and Surgeons, Columbia University, New York, New York, USA; Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA; Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA. 2. Cornell Center for Research on End-of-Life Care, Weill-Cornell School of Medicine, New York, New York, USA. 3. Noncommunicable Diseases Research Division, Wits Health Consortium (PTY) Ltd, Johannesburg, Gauteng, South Africa; Centre for Palliative Care, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, Gauteng, South Africa. 4. Department of Internal Medicine, Chris Hani Baragwanath Academic Hospital and Faculty of Health Sciences, University of Witwatersrand, Johannesburg, Gauteng, South Africa. 5. Noncommunicable Diseases Research Division, Wits Health Consortium (PTY) Ltd, Johannesburg, Gauteng, South Africa; Department of Surgery, Chris Hani Baragwanath Academic Hospital and Faculty of Health Sciences, University of Witwatersrand, Johannesburg, Gauteng, South Africa. 6. Division of Pulmonology, Department of Internal Medicine, Chris Hani Baragwanath Academic Hospital and Faculty of Health Sciences, University of Witwatersrand, Johannesburg, Gauteng, South Africa. 7. Department of Surgery, Chris Hani Baragwanath Academic Hospital and Faculty of Health Sciences, University of Witwatersrand, Johannesburg, Gauteng, South Africa. 8. University of Connecticut School of Medicine, Farmington, Connecticut, USA. 9. Herbert Irving Comprehensive Cancer Center, College of Physicians and Surgeons, Columbia University, New York, New York, USA; Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA. 10. Herbert Irving Comprehensive Cancer Center, College of Physicians and Surgeons, Columbia University, New York, New York, USA; Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA. 11. Noncommunicable Diseases Research Division, Wits Health Consortium (PTY) Ltd, Johannesburg, Gauteng, South Africa; MRC Developmental Pathways to Health Research Unit, Department of Pediatrics, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, Gauteng, South Africa. 12. Noncommunicable Diseases Research Division, Wits Health Consortium (PTY) Ltd, Johannesburg, Gauteng, South Africa; Division of Medical Oncology, Department of Internal Medicine, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, Gauteng, South Africa. 13. Herbert Irving Comprehensive Cancer Center, College of Physicians and Surgeons, Columbia University, New York, New York, USA; Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA; Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA. Electronic address: ain1@columbia.edu. 14. Division of Pulmonology, Department of Internal Medicine, Chris Hani Baragwanath Academic Hospital and Faculty of Health Sciences, University of Witwatersrand, Johannesburg, Gauteng, South Africa; University of Connecticut School of Medicine, Farmington, Connecticut, USA.
Abstract
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.
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 cancerpatients 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.
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