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

ABSTRACT:

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 resour

SUBMITTER: Fletcher J 

PROVIDER: S-EPMC8208059 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature