Health professional and family perceptions of post-stroke information

Abstract

The global burden of stroke is increasing. Many stroke survivors live with signi cant impairment; the care and support they and their families require is complex. Literature indicates some evidence to support the routine provision of information to stroke survivors and their families, but the best way to provide information is unclear.

We undertook a mixed methods descriptive survey to ascertain information needs of stroke families through identifying current practice and resources, the appropriateness, accessibility, timeliness and information gaps. The survey, which is embedded in a longitudinal research programme titled ‘Stroke Families Whānau Programme’, was used to gain an understanding of family members’ (n=19) and prac oners’ (n=23) opinions on information provision post-stroke. Qualitative and quantitative data were collected via face-to-face interviews. Descriptive statistics were used to analyse quantitative data; content analysis was used for qualitative data.

We found that for families, access to information was variable, both in quality and timeliness. Most described being overwhelmed initially with information they could not absorb; then later floundering as they had to nd their own way through the maze. Few could recall informa on that focused specifcally on them as family members. Health professionals described a range of resources and practices used to provide information. They identified barriers to e ec ve provision of information, including language and other communication barriers, time constraints and workload issues. Most did not assess health literacy levels or consider family needs to be separate to or different from the stroke survivor’s.

We concluded that access to appropriate information post-stroke was problematic for most families ad was compounded by the nature of the experience; shock following the sudden onset and adjusting to changed family dynamics. Health professionals recognised the limitations of resources, time, and funding alongside the need for timely, quality education for families post-stroke, however, a gap was identified between health professionals’ theoretical understanding of best practice in information provision and their actual practice.