ABSTRACT
CONTEXT: When religious and spiritual (R/S) care needs of patients with advanced disease are met, their quality of life (QoL) improves. We studied the association between R/S support and QoL of patients with cancer at the end of life in Soweto, South Africa. OBJECTIVES: To identify R/S needs among patients with advanced cancer receiving palliative care services and to assess associations of receipt of R/S care with patient QoL and place of death. METHODS: A prospective cohort study conducted from May 1, 2016 to April 30, 2018 at a tertiary hospital in Soweto, South Africa. Nurses enrolled patients with advanced cancer and referred them to the palliative care multidisciplinary team. Spiritual counselors assessed and provided spiritual care to patients. We compared sociodemographic, clinical, and R/S factors and QoL of R/S care recipients and others. RESULTS: Of 233 deceased participants, 92 (39.5%) had received R/S care. Patients who received R/S care reported less pain (2.82 ± 1.23 vs. 1.93 ± 1.69), used less morphine, and were more likely to die at home than patients who did not (57.5% compared with 33.7%). On multivariate logistic regression analysis, adjusting for significant confounding influences and baseline African Palliative Care Association Palliative care Outcome Scale scores, receipt of spiritual care was associated with reduced pain and family worry (odds ratio 0.33; 95% CI 0.11-0.95 and odds ratio 3.43; 95% CI 1.10-10.70, respectively). CONCLUSION: Patients with cancer have R/S needs. R/S care among our patients appeared to improve their end-of-life experience. More research is needed to determine the mechanisms by which R/S care may have improved the observed patient outcomes.
Subject(s)
Neoplasms , Terminal Care , Humans , Neoplasms/therapy , Pain , Palliative Care , Prospective Studies , Quality of Life , South Africa , SpiritualityABSTRACT
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.