PSYCHIATRIC MORBIDITY AND BURDEN AMONG CAREGIVERS OF CHILDREN WITH AUTISM SPECTRUM DISORDER IN SELECTED HOSPITALS IN GHANA

Abstract

Background: Caring for children with autism spectrum disorder (ASD) can be a very challenging task for carers and other family members especially in a resource restricted country like Ghana. In the past, Autism was considered to be a rare condition especially among Black populations. However, epidemiological studies have documented a gradual but consistent increase in the global prevalence of autism. Consequently, there have been reports of increased burden and psychiatric morbidity among caregivers of these children. Limited research in this area has been done in Africa and more specifically Ghana. This study seeks to fill this knowledge gap and serve as the basis for intervention to support caregivers. Methodology: The study was a cross-sectional one, using a mixed-method (quantitative and qualitative) approach, that determined the prevalence of psychiatric morbidity and the level of burden of care among informal caregivers of children with autism spectrum disorder (ASD) attending the outpatient clinics of selected hospitals in Ghana. It was carried out at the Komfo Anokye Teaching Hospital Psychiatry clinic, Accra Psychiatric Hospital and Pantang Psychiatric Hospital. The instruments used were a sociodemographic questionnaire, the 12-Item General Health Questionnaire (GHQ-12 ) and the Zarit Burden Interview (ZBI). Three focus group discussions were held to explore the burden of care experienced by caregivers. Results: Sixty-one caregivers participated in the study. The mean age of children was 10.64 (SD 5.15) years, 73.8% were males, 54.1% were firstborn children, lived in predominantly monogamous home settings (98.4%), with a quarter of their parents separated, divorced, or widowed. The mean age of caregivers was found to be 43.53 years (SD 8.97). Females were the predominant gender (82%) with mothers forming 73.8% and 18% of caregivers were unemployed. The prevalence of psychiatric morbidity among caregivers was 45.9% and 36.1% of all caregivers had a high level of burden of care. Factors significantly associated with psychiatric morbidity and a high burden were the child’s birth order and the employment status of the caregiver, respectively. Following multiple linear regression with adjustment for age, a predictor of high burden was found to be the employment status of the caregiver. And unemployed caregivers were found to be 8 times more likely to be burdened as compared to the employed (adjusted OR=7.69, 95% CI 1.71-34.68, p = 0.008). Also, it was found that caring for a child who was either a second or third born, was associated with a caregiver being 4 more times at risk of having psychiatric morbidity, as compared to caring for a firstborn child (unadjusted OR= 4.03, 95% CI 1.28-12. 62, p = 0.017). Caregivers perceived that autism was caused by spiritual and biomedical causes. Challenges experienced by the caregivers included dealing with the disorder and caregiving, stigma and social exclusion, financial problems, relationship problems, coping with the challenges and the need for support. Unmet needs included acceptance from family and the society, special schools, support systems (social, financial, skills training), advocacy and education. Conclusion: Psychiatric morbidity among caregivers of children with autism is common with a prevalence of 45.9%, implying that about 5 in 10 caregivers is affected. Also, 36.1% of all caregivers had a high level of burden of care. These results are in keeping with the literature about the fact that caregivers of children with autism experience a higher level of psychosocial burden, compared to typically developing children and children with other neurodevelopmental disorders. There is, therefore, the need to incorporate mental health screening of caregivers of children with ASD into the routine care of their children. Furthermore, there is a need to develop policies, interventions, and support systems to mitigate the psychosocial burden they face.