Information needs of people who have suffered a stroke or TIA and their preferred approaches of receiving health information: A scoping review

PURPOSE: We aimed to synthesize the information needs of people with stroke (PwS) in recurrent stroke prevention.

METHODS: In this scoping review we searched Medline (via PubMed), CINAHL, and PsycINFO from inception to June 5, 2023, to identify all studies describing the information needs of people 18 years and older who have suffered a stroke or transient ischemic attack within the past 5 years. We included qualitative and quantitative studies from developed countries published in German or English. Data analysis was performed following Arksey and O'Malley's methodological framework for scoping reviews.

FINDINGS: We screened 5822 records for eligibility and included 36 articles published between 1993 and 2023. None of the included studies used a comprehensive framework or defined information needs. Based on statements from PwS and their caregivers, PwS needed information on treatment, etiology, effects of stroke, prognosis, rehabilitation, discharge, life changes, care role, support options, information sources, and hospital procedures. The most frequently expressed needs were information on the treatment (77.8%) and stroke etiology (63.9%). The primary information source was healthcare professionals (85.7%), followed by written information (71.4%), family and friends (42.6%), and the internet (35.7%), with information provided directly by healthcare professionals being preferred. The timing of information transfer is often described as too early.

CONCLUSION: PwS are primarily interested in clinical information about stroke, for example, treatment and etiology, and less often in information about daily life, for example, rehabilitation, the role of care, or lifestyle changes. PwS prefer to receive information directly from healthcare professionals. Developing a shared understanding of PwS's information needs is crucial to implement suitable strategies and programs for dealing with these needs in clinical practice.