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Table 3 How the Tourette OCD Alberta Network addressed needs identified by families with TS and/or OCD

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

Family need identified in interviews How the TS Tourette OCD Alberta Network pivoted to need
Absence of coherent pathway to treatment Albertans searching for assistance elicit immediate response from program coordinator via website
Inconvenience to working parents living afar Consultations via telemedicine/videoconferencing
Clinicians’ skill gap Webinars for healthcare professionals on psychoeducation and behavioural therapies for TS and OCD
Insufficient knowledge of TS and OCD in schools Educational outreach program for teachers and classmates
Information about TS and OCD in unified, single resource The Tourette OCD Alberta Network is attempting to be a central point of access to information related to TS and OCD and frequently co-occurring conditions through our website and newsletter. The website is a depository of information in a variety of forms and media. The organization of the website is user defined. Families and patients, health care professionals, and educators can access dedicated and differentiated resources by navigating to specific content. The program coordinator is available to field direct inquiries pertaining to, for example, clinical referrals and specific resources. In a drive to make information comprehensible, accessible, and timely, the Tourette OCD Alberta Network delivers regular online webinars. The webinars are publicized in our monthly newsletter and explicitly underline the events are for patients and families
www.touretteocdalbertanetwork.ca
Peer Support The Tourette OCD Alberta Network’s monthly newsletter regularly features articles, videos and profiles of real-world experiences of people living with TS and OCD. The strength that parents draw from other families’ experiences informs our intention to develop a peer support program