Daniel S O'Neil, Holly G Prigerson, Keletso Mmoledi, Mfanelo Sobekwa, Mpho Ratshikana-Moloko, Jacob M Tsitsi, Herbert Cubasch, Michelle L Wong, Jones A O Omoshoro-Jones, Paul E Sackstein, Craig D Blinderman, Judith S Jacobson, Maureen Joffe, Paul Ruff, Alfred I Neugut, Charmaine L Blanchard

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. To better understand the challenges of informal caregivers at the end-of-life in South Africa, both at home and in inpatient facilities. 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 versus in inpatient facilities. Among 174 patients, 62 caregivers (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. 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.