ArticleJournal of pain and symptom management2018
Informal Caregiver Challenges for Advanced Cancer Patients During End-of-Life Care in Johannesburg, South Africa and Distinctions Based on Place of Death.
Article in Journal of pain and symptom management, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it.
- What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence.Palliative medicine · 2021Pooled it
- Caregiver Burden of Palliative Cancer Patients: A Cross-Cultural Perspective.Florence Nightingale journal of nursing · 2024Article
- Family caregiver related factors contributing to role strain among adult patients with cancer at a National Referral Hospital in Kenya: cross-sectional study.The Pan African medical journal · 2024Article
- The roles and experiences of informal carers providing care to people with advanced cancer in Africa-A systematic review and critical interpretive analysis.PLOS global public health · 2023Article
- The social burden experienced by families caring for members living with cancer in KwaZulu-Natal, South Africa.African journal of primary health care & family medicine · 2021Article
- The power of informal cancer caregivers' writings: results from a thematic and narrative analysis.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2021Article
- The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study.Palliative medicine · 2021Article
- Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe.BMC palliative care · 2021Article
- A Prospective Cohort Study of Factors Associated With Place of Death Among Patients With Late-Stage Cancer in Southern Africa.Journal of pain and symptom management · 2019Article
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16 authors.
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Abstract
contextIn 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.
objectivesTo better understand the challenges of informal caregivers at the end of life in South Africa, both at home and in inpatient facilities.
methodsWe 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.
resultsAmong 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.
conclusionInformal 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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