Evaluation of the informal caregiver burden in the care of stroke patients at Kenyatta National Hospital.

Abstract

Background Stroke is the second major cause of disability after dementia globally. In sub-Saharan Africa the incidence is increasing and occurring at even younger ages. Most stroke survivors return home after discharge and the burden of caring for them largely falls on their families and communities around them. These informal caregivers are directly affected by patients’ illness and this can affect their health status. They are at higher risks of mental and physical illnesses. Caregivers experiencing strain are at a higher risk for mortality especially in elderly spouses. The identification of key factors that contribute to the stress of caregivers can help in designing intervention programs that enhance coping skills and improve overall care and wellbeing of the stroke survivors. Objectives Broad objective-To evaluate level of burden on informal caregivers of stroke patients. Materials and methods The study was carried out at Kenyatta National Hospital the main referral hospital in Kenya. The study design was a descriptive cross-sectional study of participants from: 1. Adult caregivers of stroke in the neurology, cardiac clinic and physiotherapy department 2. New caregivers of the patient at discharge from ward A total of 145 adult informal caregivers were interviewed from clinics. Informal caregivers of patients with confirmed diagnosis of stroke were recruited. Their socio-demographic information was obtained and stroke patient disability status assessed with MRS. Informal caregiver burden was evaluated using ZBI questionnaire. Assessment for level of depression was done using PHQ9 Depression Test Questionnaire. In depth interviews were undertaken on 10 additional stroke caregivers. We identified upon discharge 20 caregivers and explored their knowledge on awareness of stroke and care of the stroke patient. Data management Data was analysed using descriptive and chi square statistics with the help of SPSS and PAS software. Factor analysis and multiple regression analysis were used to describe factors influencing burden. The results included describing the overall extent of informal care giver burden and factors contributing to it. Results The stroke caregivers constituted of adult offspring at 50.7%, spouses at 24.1% and siblings at 13.8%. Their mean age was mean age was 36.2 years and 54.5% were females. There was high level of moderate to severe depression at 47.6% and 52.4% had mild or no depression. The level of informal caregiver burden was found to be moderate in 58.6% (CI 50.3%-66%) of the caregivers while 40% had mild or no burden. The major factors that contributed to burden were financial, social and psychological. Most stroke patients were cared for by their adult offspring. ix The caregiver factors which were significant were relationship to the patient with daughters having significantly more burden, being employed, shorter duration of care giving and depression. The patient factors significantly associated with burden included higher levels of disability, shorter duration of having stroke, lack of health insurance and being single. Conclusions The results of our study highlight the heavy burden borne by caregivers. It draws attention to their often unmet needs. Most stroke patients were cared for by their adult offspring. There was a high level of caregiver depression. Moreover there was little preparation of caregivers prior to discharge of their patient which may have led to high caregiver burden. There is need to institute measures for preparation and support of caregivers prior to discharge of the stroke patient.