Decoding the Support Needs of Parents of Children with Autism in Kenya

Abstract

Online social forums have been used by parents of children with disabilities as a support system where they freely share information, experiences, and their worries. The objective of this study was to examine the kinds of social support sought or received by parents of children with autism in Kenya, in order to understand their care and support needs. Data in the form of chat messages was collected from a parents WhatsApp forum by downloading it through the group administrators. Drawing on the social support theory, the study utilized the content analysis method to analyze the chat messages posted by parents. A deductive approach was employed to code the data into various themes using the Social Support Behavior Code. The study findings revealed that most parents of children with autism sought and received emotional support, followed by informational support. In addition, the study established that the needs of parents of children with autism revolved around finding solutions related to their children with autism, mainly focusing on behavior management, access to education and addressing delays in developmental milestones. Further, parents' conversations revealed a need to know how to deal with the high burden of care associated with nurturing a child with autism. The study concludes that parenting and caring for a child with autism is associated with a high burden of care and imparts on the wellbeing of the parent. The study thus recommends the design, testing, and implementation of parental support programs to meet the emotional and informational support needs of parents. The study also recommends concerted efforts by stakeholders to develop a behavior management toolkit to support the parent in nurturing care, and establishment of respite centers for parents to relieve the high burden of care.