Abstract
AimWe assessed the burden and experiences of caregivers looking after stroke patients in Kampala, Uganda.DesignWe conducted a qualitative cross‐sectional study between May 2018–July 2018 among primary caregivers of stroke patients.MethodsThe primary caregiver was defined as the person spending most of the time providing daily care for the stroke patient for at least four months. Purposive sampling was used to consecutively recruit the primary caregivers. In‐depth interviews were conducted, and audiotape recorded, and observations were also made. Data were managed using NVIVO 12.0 following thematic approach.ResultsTwenty‐five caregivers were included in the analysis with a mean age of 39.3, SD 10.7. Four themes were identified from the qualitative analysis on caregivers’ experiences of looking after stroke patients: taking on new responsibilities, factors that protected caregivers from breaking down, limited resources and experiences with patient outcomes. Our findings highlight the need for interventions to support stroke patients and their caregivers.
Highlights
Stroke remains one of the most devastating of all the non‐communi‐ cable and neurological diseases, often causing death or gross physical impairment and disability (Strong, Mathers, & Bonita, 2007)
A descriptive cross‐sectional study was conducted from May 2018– July 2018 as part of an epidemiological stroke study conducted at Nsambya hospital, a private hospital located in a peri‐urban suburb in south‐eastern Kampala, the capital city of Uganda
The primary caregiver was defined as the person spending most time providing daily care for the stroke patient or the person taking on the main caregiving roles for at least four months
Summary
Stroke remains one of the most devastating of all the non‐communi‐ cable and neurological diseases, often causing death or gross physical impairment and disability (Strong, Mathers, & Bonita, 2007). Two‐thirds of stroke survivors return home in spite of their disabilities (Strong et al, 2007). More than 85% of all stroke deaths and disabil‐ ity occur in low‐ and middle‐income countries, including sub‐Saharan Africa (SSA) (Connor, Walker, Modi, & Warlow, 2007). In Uganda, it accounts for one of the top 10 causes of hospitalization and is a major cause of chronic disease (Guwatudde et al, 2015). The responsibility for care after discharge is often transferred to a family member with no previous experience of caring for someone who has had a stroke
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