Information needs after stroke: What to include and how to structure it on a website. A qualitative study using focus groups and card sorting

Abstract

Background: Use of the Internet to obtain health and other information is increasing. Previous studies have identified the specific information needs of people with stroke but not in relation to the Internet. People with aphasia (PwA) may face barriers in accessing the Internet: Navigating websites requires an ability to categorise information and this ability is often impaired in PwA. The website categorisation preferences of people with stroke and with aphasia have not yet been reported.

Aims: This study aimed: (a) to determine what information people who have had a stroke would like to see on a website about living with stroke; (b) to determine the most effective means of structuring information on the website so that it is accessible to people with stroke; and c) to identify any differences between people with and without aphasia in terms of preferences for structuring information on the website.

Methods & Procedures: Participants were recruited from a hospital's Stroke Database. Focus groups were used to elicit what information participants wanted on a website about living with stroke. The themes raised were depicted on 133 cards. To determine the most effective way of structuring information on the website, and whether there were any differences in preferences between PwA and PwoA, participants used a modified closed card-sorting technique to sort the cards under website categories.

Outcomes & Results: A total of 48 people were invited, and 12 (25%) agreed to take part. We ran three focus groups: one with PwA (n = 5) and two with people without aphasia (PwoA) (n = 3, n = 4). Participants wanted more information about stroke causes and effects (particularly emotional issues), roles of local agencies, and returning to previous activities (driving, going out). All participants completed the card-sorting exercise. Few cards (6%) were categorised identically by everyone. Cards relating to local agencies and groups were not consistently categorised together. Cards relating to emotions were segregated. The categorisation preferences for PwA were more fragmented than those for PwoA: 60% of PwA agreed on the categorisation of 51% of the cards, whereas 60% of PwoA agreed on the categorisation of 76% of the cards.

Conclusions: Information needs covered all stages of the stroke journey. The card sorting was accessible to everyone, and provided evidence of structuring preferences and of some of the categorisation difficulties faced by PwA. More research is needed on what an accessible website looks like for PwA.

Keywords:

• Internet-based health information
• Website information structure
• Stroke education
• Aphasia
• Stroke information needs

Acknowledgments

The authors gratefully thank the participants who volunteered to take part in this study; those giving support and advice from the Speech and Language Therapy Department, Portsmouth City Teaching Primary Care Trust; the pompeystrokes website team; and the Community Stroke Rehabilitation Team, Portsmouth Hospitals NHS Trust. The authors report no conflict of interest.