Quality of Life of Caregivers of Children with Autism Spectrum Disorders in Nigeria

Background:

Autism Spectrum Disorder (ASD) is a disabling neuro-developmental disorder. In resource-poor countries with dearth of specialised services and formal support for children with disabilities, informal caregivers have little or no respite in caring for children with ASD. The impact of caring for a child with ASD may negatively impact the mental health and quality of life of caregivers, which may subsequently jeopardise the continuity of informal care available for children with ASD. Since, the well being of the informal caregiver is inextricably linked to that of the child with ASD, it is pertinent to determine the mental health of the caregivers, in order to inform relevant interventions.

Objectives:

1. To assess the Quality of life of informal caregivers of children with ASD.

2. To compare the QOL of the caregivers with that of a control group, matched for age and gender

3. To determine the correlates of Quality of life and depression among the study group

Methods:

The study group consisted of caregivers (n=42) of children with ASD attending a tertiary mental health care facility in Lagos, Nigeria. The control group consist of age and gender matched individuals from the same community who were involved in caring for children without chronic disease. The study instruments consisted of a socio-demographic questionnaire, World Health Organisation Quality of Life Questionnaire Brief form (WHOQOL- Bref), Mini International Neuropsychiatric Interview (MINI version 5.0) and the Oslo-3 Support Scale (OSS-3). Qualify of life (QOL) of the participants was assessed across four domains namely physical health, psychological health, social relationships and environment. Participants were assessed for depression using the MINI. The level of social supports available to the caregiver was determined using the OSS-3. The data was analysed using SPSS-IBM version 20.

Results:  The majority (76.2%) of the caregivers were females, and 61.9% were mothers of the children with ASD. More than half (54.8%) of caregivers reported quitting their jobs due to the demands of care-giving. None of the caregivers had any form of formal social or financial welfare support outside the family. Nearly half (47.6%) of the caregivers rated the support received within the family as poor. Caregivers of children with ASD had significantly poorer overall Quality of life scores in comparison with the control group (t=2.089, p=0.041). Quality of life of the caregivers was also significantly lower in the psychological domain (t= 3.233, p=0.002) and environmental domain of WHOQOL-Bref (t=4.032, p=˂0.001). Caregivers who had to quit their jobs to care for children with ASD reported significantly lower QOL in the physical domain (t=2.168, p=0.036) and social relationships domain (t=5.475, p=0.008). Caregivers had higher prevalence of depression (23.8%) compared with 14.2% in the control group (p=0.266). Caregivers with poorer quality of life were more likely to be depressed (p<0.005). Caregivers with depression reported lower levels of social support (p<0.005).

Conclusions:  The findings highlights the need for formal support and other interventions targeted at improving the quality of life and addressing the mental health needs of caregivers of children with ASD.