A qualitative enquiry into the challenging roles of caregivers caring for children with Autism Spectrum Disorders in Ghana

Autism Spectrum Disorder (ASD) is a complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behaviour (American Psychiatric Association, 2013). Caregivers of children with ASD suffer an array of challenges, as they support children with varied levels of communication and intellectual disabilities (Tathgur & Kang, 2021).

The problem of independence coupled with other social and communication deficits makes caring for ASD-affected children very tough and demanding (Tathgur & Kang, 2021). The nature of the condition is such that caregivers take up additional responsibilities associated with diagnosis, health, behaviour, and assisting their children in everyday life activities. According to Eapen and Guan (2016), problems with the child's behaviour, lack of sufficient professional assistance, and social perceptions of ASD are other factors that contribute to the stresses associated with caring for children with ASD.

Ayeni-Bepo (2023) recently observed that the challenges faced by caregivers with children with ASD range from mild to profound, and this also correlates with the position of the affected child on the ASD spectrum. This observation is what gives credence to the opinion that the challenges of caregivers of children with ASD are never-ending. Seemingly, meeting the high care demands of affected children requires much time, effort, and patience (Hoefman et al., 2014). Unfortunately, these challenges have been proven to have a significant effect on both the physical and psychological health and well-being of caregivers (Agyekum, 2018; Tathgur & Kang, 2021).

In Ghana, estimates available indicate that the proportion of children below age 14 suffering from ASD is increasing (Ruparelia et al., 2016). Another study in 2009 specifically reported a prevalence of 0.08% with a marginal increase to 11.4% in 2012 among children with Intellectual Disabilities (Bakare et al., 2009, Bakare, Ebigbo and Ubochi, 2012). These estimates provide evidence that ASD cases are gradually rising in Ghana, and correspondingly, many caregivers are being faced with challenges as they care for their affected children. It has been documented that caregivers of children with ASD in Ghana are stigmatized and hence rely on some documented strategies as coping measures (Oti-Boadi et al., 2020). The situation of the Ghanaian caregiver is compounded by a lack of awareness of the disorder even among HCWs (Sampson & Ashiagbor, 2018). Diagnosis and healthcare for children with ASD in Ghana is also an issue of concern, as there are limited numbers of specialists and facilities in the country to offer care and support to affected children and their families (Salifu & Mate-Kol, 2014; Sampson & Ashiagbor, 2018).

Most of the studies done in Ghana among caregivers of children with ASD focused mainly on the social challenges with little or no emphasis on the psychological, educational and healthcare challenges (Appiah & Appiah Osei, 2023:(Oti-Boadi et al., 2020). Based on these contextual factors, we contend that caregivers of children with ASD in Ghana will face many challenges; therefore, we planned this study specifically to explore the challenges experienced by caregivers of children with ASD in Ghana.

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