Parents' perspectives on the quality of life of adolescents living with autism spectrum disorder in Ghana

Background

Autism Spectrum Disorder (ASD) is a challenging public health condition with significant impacts on the wellbeing and quality of life of adolescents. This study uses Betty Ferrel's Quality of Life Model (1996) to investigate Parents' perspectives on the quality of life of adolescents living with ASD. The study focuses on three main constructs: physical wellbeing, social wellbeing, and support systems. The study explores the challenges faced by children with ASD through parental perspectives and offers insights into coping mechanisms.

Methodology

An exploratory descriptive qualitative design was employed to investigate the physical, and social wellbeing of adolescents with ASD. Thirteen participants from the Accra Metropolis were interviewed using a semi-structured guide, with participants’ consent. The interviews were recorded, transcribed, coded, and analyzed using thematic content analysis. Three major themes and 11 subthemes were identified.

Results

A thematic content analysis identified three main themes and eleven sub-themes. The findings revealed that adolescents with autism experienced varying degrees of quality of life across different domains: physical wellbeing, social wellbeing, and support systems. Adolescents with autism exhibited low physical wellbeing, marked by significant dependency and co-existing conditions, and an inability to perform basic life functions independently. Despite poor oral communication skills, they maintained good social wellbeing with cordial relationships. A notable absence of support systems was identified. Additionally, Muslim respondents were absent due to cultural practices, highlighting a need for future research in this area.

Conclusion

The study highlights the multifaceted challenges faced by adolescents with autism, particularly in physical wellbeing, while also noting their capacity for social engagement. The absence of Muslim participants underscores the need for culturally sensitive research to address gaps in understanding. Public education and sensitization about ASD are imperative. Moreover, governmental and non-governmental organizations should establish training and educational support systems for autistic adolescents to enhance their quality of life. Findings revealed barriers to education, social integration, and access to healthcare.