The aim of this study is to investigate the experience of mothers of children with autism in Indonesia in raising the children and obtaining services for them. The present study seeks to contribute to the knowledge emerging from this study of user perspective on health and disability services area. There is silence in the Indonesian literature on this perspective, especially about the parents and/or mothers of children with autism that is the focus of this analysis. Therefore, in order to capture the points of view emerging from the mothers, a qualitative study design has been applied. The main data for this qualitative study was collected from interviews (semi-structured interviews and focus group discussion) with the mothers of children with autism who are member of parenting group in schools educating children with autism and rehabilitation centers in Barang1,Indonesia. The Indonesian government have formulated many policies in the areas of Education, Health and Social Affairs to assist and to help people with disability. Indonesia aims to empower them as community member as well as the citizens of Indonesia. However, the experiences of the mothers in this study suggest that the implementations of the policies are still not performing well, especially for the targeted population who are suffering with autism. This study reveals that the mothers’ experience in raising a child who is diagnosed with autism is rooted in limited knowledge on autism, limited knowledge on availability of services and limited knowledge on service options. Compounding this is limited availability and accessibility of the services that are important to their child's development. An important contribution of this thesis is to show how tapping into the experience of mothers can provide much needed information to policy making and service planners and implementers that can improve the services for children with autism and their families.
|Date of Award
|Anni Dugdale (Supervisor), Dugald Monro (Supervisor) & Phil Larkin (Supervisor)