End-user perspectives on the development of an online intervention for parents of children on the autism spectrum

Abstract

Strong evidence suggests that parents of children on the autism spectrum face increased stressors to their physical and mental wellbeing due to the demands of caregiving and paucity of support. The disparity between the services currently offered and unmet needs indicates that accessible and flexible support through online delivery is needed for parents. This study presents the ideas and perspectives collected from five focus groups of 17 parents of autistic children, on the optimal content and implementation strategy of an online intervention. Using thematic framework analysis, we derived themes under the categories: the need for online interventions; content and design; and implementation. Parents supported the development of a multicomponent online intervention which combines psychoeducation with peer-support and access to healthcare professionals. Lay abstract Parent caregivers play an essential role in the lives of individuals on the autism spectrum. The demands of caregiving can have negative effects on the mental and physical wellbeing of parents. Different types of formal support have been developed to help parents to cope with caregiving; however, many parents struggle to access services due to limited availability and busy schedules. The Internet could offer parents more accessible and flexible support. We asked 17 parents what content they would like to include in an online resource. Parents told us about their experiences trying to access and use existing formal support and websites. They overwhelmingly supported the development of an online resource informed by their suggestions. Parents emphasised the need for easier access to information through educational components and direct access to healthcare professionals online. Parents also wanted help with finding existing services and reliable, locally relevant information. Parents stressed the need for a safe environment to meet and chat with other parents online. This research forms the first stage in the development process of an online health resource for parents.