Caring for a stroke patient: The burden and experiences of primary caregivers in Uganda – A qualitative study

Namale, Gertrude; Kawuma, Rachel; Nalukenge, Winifred; Kamacooko, Onesmus; Yperzeele, Laetitia; Cras, Patrick; Ddumba, Edward; Newton, Robert; Seeley, Janet

doi:10.1002/nop2.356

Cited by 27 publications

(58 citation statements)

References 25 publications

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“…The development of healthcare approaches that can allow early access to specialized neurological care, availability of rehabilitation, effective treatment, and improved knowledge on factors associated with a higher risk of death should contribute to decreasing the considerable burden of stroke in SSA. However, in this cohort, although stroke patients had no access to formal rehabilitation services in their communities, family members were often dedicated in their provision of care to their loved ones at home [28]. Consistent with previous findings [33], our study showed that marriage provided a protective effect for mortality at day 90.…”

Section: Discussionsupporting

confidence: 89%

“…The lack of stroke rehabilitation facilities, the inadequate home-based care support for stroke patients and the high levels of poverty within the communities [8,28] may also have contributed towards the poor outcomes among our stroke patients. In this cohort, sometimes a patient would be withdrawn from the hospital against medical advice due to fear of the high medical bills [28]. Moreover, the majority of patients who participated in this study catered for their own medical bills and only a few had health insurance.…”

Section: Discussionmentioning

confidence: 99%

“…Moreover, the majority of patients who participated in this study catered for their own medical bills and only a few had health insurance. A recent qualitative study [28] conducted in Uganda, found that some patients were taken to churches or traditional healers for treatment where they would eventually die or lost to follow up. The concern is that, poor stroke outcomes may increase in the region if interventions for prevention and poststroke care are not put in place.…”

Section: Discussionmentioning

confidence: 99%

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Predictors of 30-day and 90-day mortality among hemorrhagic and ischemic stroke patients in urban Uganda: a prospective hospital-based cohort study

Namale

Kamacooko

Makhoba

et al. 2020

BMC Cardiovasc Disord

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Background We report here on a prospective hospital-based cohort study that investigates predictors of 30-day and 90-day mortality and functional disability among Ugandan stroke patients. Methods Between December 2016 and March 2019, we enrolled consecutive hemorrhagic stroke and ischemic stroke patients at St Francis Hospital Nsambya, Kampala, Uganda. The primary outcome measure was mortality at 30 and 90 days. The modified Ranking Scale wasused to assess the level of disability and mortality after stroke. Stroke severity at admission was assessed using the National Institute of Health Stroke Scale (NIHSS) and Glasgow Coma Scale (GCS). Examination included clinical neurological evaluation, laboratory tests and brain computed tomography (CT) scan. Kaplan-Meier curves and multivariate Cox proportional hazard model were used for unadjusted and adjusted analysis to predict mortality. Results We enrolled 141 patients; 48 (34%) were male, mean age was 63.2 (+ 15.4) years old; 90 (64%) had ischemic and 51 (36%) had hemorrhagic stroke; 81 (57%) were elderly (≥ 60 years) patients. Overall mortality was 44 (31%); 31 (23%) patients died within the first 30 days post-stroke and, an additional 13 (14%) died within 90 days post-stroke. Mortality for hemorrhagic stroke was 19 (37.3%) and 25 (27.8%) for ischemic stroke. After adjusting for age and sex, a GCS score below < 9 (adjusted hazard ratio [aHR] =3.49, 95% CI: 1.39–8.75) was a significant predictor of 30-day mortality. GCS score < 9 (aHR =4.34 (95% CI: 1.85–10.2), stroke severity (NIHSS ≥21) (aHR = 2.63, 95% CI: (1.68–10.5) and haemorrhagic stroke type (aHR = 2.30, 95% CI: 1.13–4.66) were significant predictors of 90-day mortality. Shorter hospital stay of 7–13 days (aHR = 0.31, 95% CI: 0.11–0.93) and being married (aHR = 0.22 (95% CI: 0.06–0.84) had protective effects for 30 and 90-day mortality respectively. Conclusion Mortality is high in the acute and sub-acute phase of stroke. Low levels of consciousness at admission, stroke severity, and hemorrhagic stroke were associated with increased higher mortality in this cohort of Ugandan stroke patients. Being married provided a protective effect for 90-day mortality. Given the high mortality during the acute phase, critically ill stroke patients would benefit from early interventions established as the post-stroke- standard of care in the country.

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Section: Discussionsupporting

confidence: 89%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Predictors of 30-day and 90-day mortality among hemorrhagic and ischemic stroke patients in urban Uganda: a prospective hospital-based cohort study

Namale

Kamacooko

Makhoba

et al. 2020

BMC Cardiovasc Disord

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“…Caregiver burden is associated with negative outcomes for both caregivers and patients, including the reduction of their general health and quality of life [ 4 , 5 ], and increasing the risk for patient’s morbidities [ 6 – 8 ], which is a multidimensional response to perceived stress and negative assessments that derive from providing care to a patient [ 9 ]. Caregivers of stroke patients experience a high level of caregiver burden because they need to provide care for long hours [ 10 , 11 ], and the patients usually dependent on them for their activities of daily life (ADL) [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

The effect of a supportive home care program on caregiver burden with stroke patients in Iran: an experimental study

Farahani

Ghezeljeh

Haghani

et al. 2021

BMC Health Serv Res

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Background Stroke can impose a heavy burden on caregivers. Caring for stroke patients at home is more challenging than in hospitals with facilities. The purpose of this study was to evaluate the effect of a supportive home care program on caregiver burden with stroke patients. Methods This was an experimental study. One hundred sixteen caregivers of stroke patients were recruited using convenience sampling from two university-affiliated hospitals in Tehran from June 2019 to February 2020. They were randomly allocated into two groups (supportive home care program and routine hospital education program) using a randomized block design. The supportive home care program included eight educational sessions delivered in the hospital before discharge, and with home visits after hospital discharge. Caregiver burden was measured using Caregiver Burden Inventory. The data were analyzed using independent samples t-test and Analysis of Covariance. Results Caregiver burden in the routine education group increased significantly after 2 weeks, from 52.27 ± 23.95 to 62.63 ± 22.68. The mean of caregiver burden scores in the supportive home care program decreased from 44.75 ± 17.21 to 40.46 ± 17.28. The difference between the scores of the two groups before the intervention was not significantly different (t = 1.941, df = 114, p = 0.055). There was a significant difference between the two groups regarding caregiver burden scores after the intervention period (η2 = 0.305, P < 0.001). Conclusions Caregiver burden increased significantly after the discharge without proper interventions in the caregivers of stroke patients. Providing support for home care providers can help to decrease or prevent the intensification of caregiver burden.

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“…Family caregivers of stroke survivors frequently feel insufficiently supported 26–28. Several studies have addressed the development and evaluation of interventions aimed at preparing family caregivers to fulfil their caregiving role and at the same time, reduce the care burden.…”

Section: Introductionmentioning

confidence: 99%

Effect of a tailored multidimensional intervention on the care burden among family caregivers of stroke survivors: study protocol for a randomised controlled trial

et al. 2020

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IntroductionCaring for stroke survivors creates high levels of care burden among family caregivers. Previous initiatives at alleviating the care burden have been unsuccessful. The proposed study aims to evaluate the effect of a tailored multidimensional intervention on the care burden among family caregivers of stroke survivors. Based on the perceived needs of family caregivers, this intervention takes into account scientific recommendations to combine three different approaches: skill-building, psychoeducation and peer support.Methods and analysisUsing a prospective, randomised, open-label, parallel-group design, 110 family caregivers will be enrolled from Dakahlia Governorate, Egypt between December 2019 and May 2020, and randomly assigned to either the intervention group or the control group. The tailored multidimensional intervention will be administered for 6 months, including three home visits, six home-based telephone calls and one peer support session. The primary outcome is the care burden as measured using the Zarit Burden Interview. Secondary outcomes include changes in the family caregivers’ perceived needs (Family Needs Questionnaire-Revised), coping strategies (Brief-Coping Orientation to Problems Experienced) and quality of life (WHO Quality of Life-BREF). Outcomes evaluation will be conducted at baseline (T0), month 3 (T1) and month 6 (T2). Independent t-test will be performed to compare the mean values of study variables between the two groups at both T1 and T2. After adjusting for confounding variables, analysis of covariance will be used to assess the effect of the intervention. In addition, repeated measures analysis of variance will be conducted to assess changes in effect over time.Ethics and disseminationThis study was approved by the Research Ethics Committee of the Faculty of Nursing, Mansoura University, Mansoura, Egypt (P.0195). The results will be published in a scientific peer-reviewed journal, and findings will be disseminated at the local and international levels.Trial registration numberNCT04211662.

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Caring for a stroke patient: The burden and experiences of primary caregivers in Uganda – A qualitative study

Cited by 27 publications

References 25 publications

Predictors of 30-day and 90-day mortality among hemorrhagic and ischemic stroke patients in urban Uganda: a prospective hospital-based cohort study

Predictors of 30-day and 90-day mortality among hemorrhagic and ischemic stroke patients in urban Uganda: a prospective hospital-based cohort study

The effect of a supportive home care program on caregiver burden with stroke patients in Iran: an experimental study

Effect of a tailored multidimensional intervention on the care burden among family caregivers of stroke survivors: study protocol for a randomised controlled trial

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