Challenges and coping strategies: An exploration of the lived experiences of parents of children on the autism spectrum

  • Duncan Mercieca (Member)

    Activity: Other activity typesOther


    A considerable number of children experience learning and health-related difficulties that require accommodation and care at school and home. A large body of research is focused on issues that students with special educational needs face and the interventions that educators undertake to support such students. However, a relatively small number of studies examine problems that parents of children with autism spectrum disorder (ASD) encounter through the care of their children's conditions and their efforts to secure adequate social and educational support. Thus, the primary goal of this study is to identify the difficulties that parents encounter through the care for their children diagnosed with ASD and to examine how they cope with the challenges caused by the increased demands related to care for education and inclusion of their children in social life. Another objective is also to determine the forms and domains in which parents need assistance. Children shall be identified in collaboration with NGOs and parents will be invited to participate in this exploratory mixed methods study that will include a smaller number of initial interviews and a large-scale survey. The research team will also include two parents of children diagnosed with ASD as collaborators or critical friends. Parents will be invited to participate through their association(s) and approximately 30 of them will be invited to take part in a semi-structured face-to-face or telephone interview, or until we get saturated responses. The study also aims to contribute to better inclusion of students in educational settings, and their better integration in family life through reduced parental stress and improved coping strategies. The interviews will seek information about the issues that parents face and the needs for services that they perceive as the most useful for them and their children. In addition to the basic sociodemographic data, the survey will focus on the collection of data related to parents' self-reported difficulties and their ability to positively (re)interpret their situation, on their mental and behavioural (dis)engagement, coping strategies, acceptance of their children(s) condition and use of emotional and social support networks if available. Through this study, we will employ English and Maltese versions of instruments for the diagnosis of parental stress levels and coping strategies.
    Degree of RecognitionLocal