Specializing online health communities for autism parents in Turkey

This thesis explores the support seeking practices of parents who have children on the autism spectrum ("autism parents") with a transformative agenda. Autism parents face familial, social, psychological and financial challenges more than their peers who have children with typical development. Possible causes of these challenges include insufficient services for the child and the family, financial and career adjustments needed in order to provide care and education to the child, and the society's lacking understanding of autism. These challenges manifest themselves even stronger in countries like Turkey, where parents manage and navigate excessive uncertainty on a daily basis due to the inadequacy of the state-based services and the dominance of the medical discourse around disability. Many parents turn to online support spaces (e.g. social media groups) to cope with these uncertainties, however the effectiveness of such spaces is questionable. The aim of the thesis is, therefore, to investigate the online and offline support seeking practices of autism parents, and to inform the design of online tools that can better accommodate their practices. These issues were explored throughout a mixed-method design ethnographic research, which revealed how autism parents seek and share support offline and online as well as the shortcomings of the online platforms in Turkey in accommodating autism parents' experiences. Findings from the design ethnography generated design implications for online health communities for parents, and these implications were compared with the literature following a systematic literature review on the design of online health communities. The systematic review also consolidated the design knowledge produced by HCI researchers (the field of Human-Computer Interaction) on the exchange of support in online health and caregiver communities. The primary contributions of this work are: (1) a design ethnographic account of autism parenthood in Turkey, (2) a consolidation of design knowledge produced on online health communities, and (3) implications for designing online communities to accommodate the complexity of seeking and sharing informational, emotional and instrumental support for autism parents.