Original Research Caregivers’ expectations of their non-verbal autistic children in rural KwaZulu-Natal

Fatima Haffejee, Jennifer A.H. Pahl, Saira B. Karrim

About the author(s) Fatima Haffejee, Discipline of Speech-Language Pathology, School of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Jennifer A.H. Pahl, Discipline of Speech-Language Pathology, School of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Saira B. Karrim, Discipline of Speech-Language Pathology, School of Health Sciences, University of KwaZulu-Natal, Durban, South Africa

Abstract

Background: Caregiver expectations have been shown to impact child outcomes. There is limited research regarding caregivers of non-verbal autistic children in rural South Africa. Autistic individuals form part of a larger environment, which they influence and which impacts them. Caregivers form part of this environment.

Objectives: This study aims to explore caregivers’ expectations of communication, education, social implications and intervention for their non-verbal autistic child in rural KwaZulu-Natal (KZN).

Method: Bronfenbrenner’s ecological and bioecological systems theory framed the study and allowed the child’s interaction with their environment to be understood through the use of a qualitative study design via interviews. Eleven caregivers (pilot study: n = 1 and main study: n = 10) of non-verbal autistic children were selected and interviewed. Data were analysed thematically.

Results: Caregivers had varied expectations. Grandparents were often the primary caregivers (microsystem). Relationships within the mesosystem (caregiver and therapist) and caregiver’s understanding affected their feelings and expectations that changed over time (chronosystem). Education was the predominant expectation. The study highlighted limited resources (schools) within the exosystem. Caregivers reported both support and judgement from their communities.

Conclusion: There is a need for public awareness, caregiver counselling and autism support groups in rural KZN and more specialised education options in order to improve caregivers’ expectations.

Contribution: This study contributes to the limited literature in the field of autism in South Africa, more specifically the rural context and communication disorders.

Keywords

autism spectrum disorder; parents; expectations; caregivers; communication; speech-language therapy; rural; education

Sustainable Development Goal

Goal 3: Good health and well-being

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