Caregivers’ Distress and Care Support Among Caregivers of Patients with Autism in a West Africa Community Surveillance

Background:

Autism is a neurodevelopmental disorder with poor diagnostic coverage in developing world. In Nigeria, most of the subjects have had psychiatric diagnosis other than Autism or an Autistic Spectrum Disorder (ASD) at some point in time, resulting in significantly negative impact on their care and outcome. Parents/caregivers of these subjects may therefore experience frustration while in search for diagnosis, care and support. These experiences affect different facets of their lives.

There is a large gap in the services for these subjects and caregivers. Many fund the care of the subjects by out of pocket expenditure, while others rely on family members and communities for support.

Objectives:

The study aims to determine the distress experienced by caregivers of patients diagnosed and their social support.

Methods:

Subjects were recruited from an autism awareness programme through one-on-one consultation. A sociodemographic questionnairewas administered to all consenting participants following which they were screened using, Modified Check list for Autism in Toddlers (MCHAT) for children aged 3years and younger and Childhood Autism Spectrum Test (CAST) for those older than 3 years of age. Diagnosis of ASD was made based on DSM 5 criteria for autistic spectrum disorder.The perceived social support scale was used to assess the level of social support.

Results:

A hundred and one subjects (101) out of a total of 276 people with neurodevelopmental disorders met the DSM 5 clinical diagnosis of ASD, Fifty eight (57.4%) met a diagnosis of ASD by screening with CAST and MCHAT - 74% by CAST and only 4.2% using MCHAT. Majority of the subjects (82.2%) were males and about a third (32.7%) are less than 5years. More than three quarters (79.2%) are schooling with about two thirds (65.9%) in regular schools.

Only a tenth (10%) of the caregivers belong to a self help group, caring for the subjects had impacted negatively on the relationship of 9% of the caregivers with their spouses, more than 3 quarter (76.8%) of the respondents reported that the care of the subjects had affected their finances, a third of them (32.4%) have people other than the spouses supporting them but area of support or type was not mentioned.

Some (15.5%) had been blaming themselves for the cause of the subjects problem, 9% of the caregivers said they are ashamed to be with the subjects while 4 of them had been contemplating suicide. Less than a fifth (19.4%) had low social support while 37.3% of them reported high level of support.

Conclusions:  Caregivers of patients with ASD experience distress in caring for their wards but seem to have a good support system despite for the lack of a structured system of support in our environment. There is a need for to strengthen the support for these caregivers so as to help in alleviating their distress.