Developing a provincial patient support network for children and families affected by Tourette syndrome and/or obsessive–compulsive disorder: results of a stakeholder consultation

BACKGROUND: Tourette syndrome and OCD are disorders that frequently occur in children and cause a high level of disability. In Alberta there is a huge delivery gap in providing healthcare services for children with TS and OCD. A stakeholder consultation was performed to ascertain how service delivery could be improved across the province and to inform the development of a provincial information and support organization, the Tourette OCD Alberta Network. METHODS: A mixed-methods study was employed: 10 parents were recruited for interview and 140 parents responded to a survey. RESULTS: Qualitative data showed there was often an absence of a clear pathway to access healthcare for people with TS and OCD. The negative impact of not receiving treatment, information, and resources in a timely and prompt manner was also revealed. Good clinical practice existed across the province but too often it was hindered by a shortage of knowledge about TS and OCD. In schools, learning for students with TS and OCD was also impaired by educators’ lack of knowledge and preparedness in relation to the disorders. CONCLUSIONS: This study identified ways that challenges with healthcare access, school learning, and seeking information can be overcome. Skills-based training webinars, educational outreach in schools, and peer support were recognized as actions for improving healthcare outcomes for people with TS and OCD. The aim of the Tourette OCD Alberta Network is to provide services and support that directly address the healthcare service delivery shortfalls shown in this study. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13034-021-00383-5.