Lived experiences of caregivers raising children living with autism in Manzini Eswatini.

Abstract

Research on autism in Eswatini is scarce, and with public awareness remaining at low levels, caregivers of children living with autism are faced with major challenges related to stigma, adverse discrimination, severe isolation, abuse and lack of supportive services. As a result, the plight of children living with autism is worse, significantly because the challenges are further escalated when combined with poverty since there is no proper diagnosis nor supportive services. Based on the researcher’s experience in the field of Social Work, and experiences of raising an autistic child and as a researcher, a gap was recognized in the awareness of autism in the country, seeing that it is in its inception stages. The overarching aim of the study was to explore the lived experiences of caregivers raising children living with autism in Manzini (Eswatini). The study utilized a constructionist paradigm, in order to delve into how caregivers construct their experiences of raising children living with autism. This study followed a descriptive-exploratory research design. The size of the study sample consisted of two males and 13 females which in total were 15 caregivers. The study utilised a purposive sampling method. Data were analysed using the Analytic Framework approach, which falls under the thematic analysis approaches for qualitative data. The findings in the study reflected that caregivers of children living with autism stress begins before the diagnosis is made and increases upon receiving the diagnosis. Significant feelings were found to be that of guilt, stress, denial, anxiety, depression, frustration, confusion, shock and fatigue; similar to the process of grief. Challenges caregivers experience is found to be lack of social support and social isolation; increasing their level of stress. Caregivers reported that their child has a positive influence on them as well as the child taught them patience, acceptance and unconditional love.