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<h5 class="section-title" id="d8974991e339">Context</h5>
<p id="P1">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.
</p>
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<h5 class="section-title" id="d8974991e344">Objectives</h5>
<p id="P2">To better understand the challenges of informal caregivers at the end-of-life
in South
Africa, both at home and in inpatient facilities.
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<h5 class="section-title" id="d8974991e349">Methods</h5>
<p id="P3">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.
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<h5 class="section-title" id="d8974991e354">Results</h5>
<p id="P4">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.
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<h5 class="section-title" id="d8974991e359">Conclusions</h5>
<p id="P5">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.
</p>
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