SURVIVORS' AND CAREGIVERS' PERCEPTIONS AND EXPERIENCES OF INFORMATION FOLLOWING A STROKE: A QUALITATIVE EVIDENCE SYNTHESIS

N. Atkinson¹, S. Rowell¹, A. Benham²

Background: Previous investigations of the efficacy of information delivery strategies have shown differing practices and a lack of consensus as to the best approaches following a stroke. It is widely accepted that information is useful for both service users and carers, yet providing more information to this group does not translate to increased satisfaction with the information given. Therefore, it is unclear why information provision strategies do not meet survivor and caregiver needs and to explore the evidence behind their information preferences.

Purpose: This review aims to systematically identify, appraise and synthesise qualitative studies exploring the perceptions and experiences of stroke patients and informal caregivers about information provision after stroke.

Methods: A search strategy was carried out using a mixture of keywords, MeSH headings and database specific terms in four electronic databases (CINAHL, MEDLINE. PsychINFO and ProQuest) from their inception to February 2020. Results were initially screened by title and then abstract, which was carried out by two reviewers. Any disagreement between reviewers was resolved through discussion. The included studies all used open ended, qualitative data collection and analysis methods; that explored stroke patients’ and caregivers’ perceptions and experiences of post-stroke information provision. No constraints were placed on location of the study, but only studies in the English language were included due to translation constraints. A thematic-synthesis approach was adopted, involving data coding, and the development of descriptive and analytical themes. The confidence in the findings was assessed using the GRADE-CERQual approach.

Results: A total of 18 studies (539 participants) were identified from 8 countries which consisted of acute stroke survivors (approx. 1 week) to >10 years. From the included studies, three analytical themes with 8 sub-themes emerged: 
(1) factors impeding access to information (healthcare professional factors, environmental factors, and patient and caregiver factors) 
(2) perceived requirements of information (information topics and information formats)
(3) the suitability of information delivery (providers of information, receivers of information, and the amount and timing of information provision).

Conclusion(s): This synthesis of qualitative evidence has shown that access to information is sometimes considered limited, unsuited to individual needs and provided at an unsuitable time for stroke survivors and their carers. Included participants often wanted information to be provided to both the patient and caregiver and to be presented in a suitable format (such as written or video format) whilst also being delivered at a suitable time in the recovery process. There was a preference for information to be provided by healthcare professionals or other patients/caregivers with adequate experience and knowledge.

Implications: Information needs and preferences of stroke survivors and caregivers depends on the complexity of needs and the recovery progress. To improve patients’ and caregivers’ ability to manage expectations with an aim to facilitate optimal recovery; the time, method and medium of information after stroke should be considered and flexible to individual needs.  

Funding, acknowledgements: No funding received for the project

Keywords: Stroke, Information, Rehabilitation

Topic: Neurology: stroke

Did this work require ethics approval? No

Institution: University of Cumbria

Committee: Rehabilitation ethics committee

Reason: Systematic review