Informal Caregiver Challenges for Advanced Cancer Patients During End-of-Life Care in Johannesburg, South Africa and Distinctions Based on Place of Death

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.

Keywords: Africa South of the Sahara; Palliative medicine; South Africa; caregivers; global health; palliative care.