Information resources about self-management addressing the needs of young stroke survivors: A scoping review

Objective(s): 1)To identify and collate information resources for young people with stroke (YPwS) and evidence-based self-managements programs and, 2)To identify gaps in age-specific resources available for YPwS living in the community.

Data Sources: Databases searched included six databases. We also used backward citation searches and reference checking methods to identify additional resources. We identified 54 guidelines, one consensus study, 10 narrative reviews, 3 scoping reviews and 11 systematic reviews potentially relevant to YPwS. We conducted a comprehensive web search using Google applying the keyword strings ‘health, wellness literacy or education’. We extracted the first 100 webpage links.

Study Selection: YPwS(18–65 years) living in the community and their caregivers were included. All study designs were included, except reviews. Titles, abstracts, full-text articles and resources content identified by the search were independently assessed by two reviewers for eligibility. From database searches, 5786 titles and abstracts were screened after duplicates removal(n =292). 619 full-text studies were assessed for eligibility, of which 18 were included. We also screened the reference lists of guidelines identified(n=3700 total references), of which one study was included. Additionally, we screened the reference lists of reviews identified(n=1067 total references) and included three articles. From the web-search, 91 webpage contents were assessed for eligibility, of which 15 sites were included. We received 46 information resources from 22 organizations, of which 12 resources targeted YPwS. Data Extraction: Data extraction was carried out independently by the authors and included data source, organization, country of origin, resource type, type of needs addressed, information/program contents, target population.

Data Synthesis: The information resources included pamphlets, radio interviews, stroke support groups, self-management programs, smartphone applications and websites, mostly from high resource settings and in English language. These addressed the following needs of YPwS: age-specific stroke information, driving, return to work, aphasia, return to sports, secondary prevention and sexuality.

Conclusions: There are limited resources that comprehensively the specific needs of YPwS. More effort is required for the development and dissemination of information resources for YPwS.

Author(s) Disclosures: No conflicts of interest