Abstract
BackgroundAutism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.ObjectivesTo explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.MethodA qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.ResultsOne theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.ConclusionOccupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.Keywordsautism spectrum disorder; children; needs of caregivers; context-appropriate services.
Highlights
Autism spectrum disorder (ASD) is a disorder associated with individuals with autism, Asperger’s disorder or a developmental disorder not otherwise specified (American Psychiatric Association 2013; World Health Organization 2013a)
Jane and Teresa reported that society believes that the causes of ASD are linked to the family of the woman, probably ‘as a curse to certain families on the woman’s side’ (Jane, a 37-year-old revenue collection officer and mother of a 4-year-old child with ASD). Annete said that her husband blamed her for their child being diagnosed with ASD, for naming the child after her deceased father. She said, ‘I named this child after my father; so when we discovered he had this problem (ASD), my husband chased me out of our marital home – he insisted they don’t have such children in their blood.’ (Annete, a 26-year-old business lady and mother of a 5-year old child with ASD)
This study endeavoured to establish the everyday experiences of caregivers whose children with ASD were receiving occupational therapy at Kenyatta National Hospital
Summary
Autism spectrum disorder (ASD) is a disorder associated with individuals with autism, Asperger’s disorder or a developmental disorder not otherwise specified (American Psychiatric Association 2013; World Health Organization 2013a). In 2008, the member states of the United Nations (UN) emphasised the need to take ASD seriously as a public health concern, and in 2012, the UN General Assembly agreed to adopt measures to address the socio-economic needs of children with ASD, family members and society. This initiative has been difficult to implement in Africa because of the lack of resources, poor advocacy, inadequate collaborative efforts and ineffective strategies (World Health Organization 2013b). Citizens of Kenya have a unique view of disability and inclusion
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