LIVED EXPERIENCES OF PARENTS RAISING A CHILD WITH CEREBRAL PALSY: A PHENOMENOLOGICAL STUDY

Abstract

This phenomenological research study explored the lived experiences of parents raising a child with cerebral palsy (CP) in the context of Kazakhstan.The aim of this study was to investigate challenges that parents face in accessing education for their child and to gather their recommendations for future improvement. It attempted to illustrate the complex nature of the educational and developmental experiences of parents of a child with CP. The study used Family Systems Theory and Social Support Theory to explore how family support and social networks influence and shape parental experiences. Six parents participated in interviews from various regions of Kazakhstan. The study findings revealed significant challenges, including poor family support, inadequate support services, negative societal attitudes, financial, emotional, and relational strain. The recommendations of parents pointed out the necessity to strengthen the state support, enhance service accessibility, provide free psychological support, and raise awareness of society to decrease parent's stress level and challenges they face. Despite parents facing these challenges, they showed remarkable resilience frequently acting as a strong advocate for their child's educational and developmental needs. Overall, the research study emphasizes the need for systemic changes to improve the family’s support, which directly affects parents' quality of life as well as child's educational outcomes within the Kazakhstani context.