The Burden of Care in Caregivers of Children With Autism Spectrum Disorder(Asd) Attending Outpatient Clinics at Kenyatta National and Referral Hospital.

Abstract

Introduction: Autism spectrum disorder (ASD) is one of the demanding neurodevelopmental disorders that presents with deficits in social interactions, communication, and disruptive behaviors which necessitate consistent, long-term attention by the caregiver. Most research on autism and caregiver burden has been done in high-income countries with paucity of data in the middle and low-income. Caregiver burden has previously been identified as a key theme during management of autistic children in the Country, Kenya. There are challenges that affect their emotional state, psychological well -being, financial status and cause psychiatric morbidity (anxiety and depression) therefore assessment, immense support and psychoeducation are needed. Objectives of the study: This study aims to assess the caregiver burden in caregivers attending to children diagnosed with ASD, to determine factors in the autistic children and caregiver’s factors associated with caregiver burden. The study aims to screen caregivers for psychiatric morbidity and investigate the lived experiences of caregivers attending to children with ASD. Method: This is a descriptive cross-sectional study, using mixed methods (embedded) study design, that was conducted in Kenyatta National Referral Hospital (KNH)- outpatient clinics attending to ASD patients. The study population using purposive sampling included all caregivers of children diagnosed with ASD. A socio-demographic questionnaire with two domains capturing the child and caregiver’s information was administered, the caregiver burden was assessed using the Zarit Burden Interview (ZBI) 22- questionnaire and a General Health Questionnaire (GHQ)-12 item tool to screen for psychiatric morbidity in the caregivers were administered. Qualitative data was collected using a sociodemographic questionnaire and face-to-face interview, following semi-structured open- ended questions conducted by the researcher. Data analysis: SPSS Version 25.0 was used for data analysis. Univariate analysis was done to show the socio-demographic characteristics of caregivers and the children with ASD. Bivariate analysis was done comparing exposure factors to the outcome variable. Multivariate analysis was conducted for variables with P value < 0.05 on bivariate analysis. The qualitative data was analyzed through line-by-line coding then transcribing done and NVivo software used for thematic analysis. Codes were clustered into categories and subcategories then labelled into descriptive phrases reducing into one theme