A Model of Care for Caregivers of Children with Autism Spectrum Disorder

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Lecturer in Occupational Therapy at UKZN Dr Deborah Leigh Fewster was awarded her PhD in Occupational Therapy during the UKZN Spring Graduation for her research on Developing a Quality of Life Model of Care for Primary Caregivers of Children with Autism Spectrum Disorder within a South African Context.

The study aimed to address the unique challenges confronted by primary caregivers (parents and family members living with the child) of children with autism spectrum disorder (ASD).

Supervised by Professors Catharina J E Uys and Pragashnie Govender, Fewster’s comprehensive mixed-method study developed a quality-of-life practice model tailored to the needs of primary caregivers in South Africa. Her research sheds light on the systemic shortcomings in healthcare, education, and societal support for individuals with ASD and their families.

Fewster commented, ‘The healthcare system, educational system, and society at large have failed individuals with autism spectrum disorder and their families. The process of diagnosis and subsequent care is marred by delays, inadequacies and, at times, a complete lack of support.’

She added that the limited and expensive educational opportunities for children with ASD, as well as the pervasive stigma that creates occupational barriers, hinder their participation in everyday activities. This inevitably impacts their quality of life as well as that of their primary caregivers.

Fewster’s model, which is the first of its kind, ‘has the potential to inform the content, structure, and delivery mechanisms of interventions for these caregivers. It also provides crucial guidelines for the healthcare, education, and government sectors to enhance the care provided to children with autism, thereby improving the quality of life of their caregivers. Recognising and supporting their caregivers is essential, as they play a vital role in the care of the child.’

Fewster expressed humility and pride in her accomplishment, noting the sacrifices made and the valuable lessons learned. She hopes to explore the practical implications of her PhD findings and continue her research in future postdoctoral endeavours. She acknowledged the support of the College of Health Sciences and the University Capacity Development Programme and expressed her gratitude for her supervisors’ exceptional mentoring.

Fewster has participated in national and international conferences and was part of the World Health Organization’s project to develop a rehabilitation package for ASD. She has received recognition as an emerging researcher and has authored several articles and co-authored a book chapter on caregiving. 

Words: Nombuso Dlamini

Photograph: Lunga Memela