Understanding stroke survivors’ information needs throughout their recovery is vital to ensure active involvement with the management plan, especially since newly diagnosed survivors frequently express their limited understanding of the condition [16]. In our analysis, different information needs emerged across recovery phases. During hospitalisation, participants focused on risk factors and recovery information, while in the community phase, participants prioritised medications, social support, finances, and insurance. There were several differences between the needs during hospitalisation and after discharge for stroke survivors, where knowing the future risk and potential functional restoration was far more important in the hospitalisation phase, shifting to the knowledge of daily medications and available support in the community. A similar pattern was observed in previous studies [7, 8]. This difference is consistent with the theory of cognitive adaptation to life-threatening events [17], where initially there is a focus on understanding the event’s causes, its impact, and the likelihood of recurrence. This emphasis transitions to concerns about self-adjustment and managing daily life during the long-term phase.

Differences based on stroke type (stroke or TIA) may stem from the complexities of stroke recovery, often involving functional complications that necessitate long-term support [18]. Individuals recovering from stroke express concerns about available support, contrasting the potential for full recovery often observed in TIA survivors. Time since stroke diagnosis also influenced survivors’ information needs, as newly diagnosed individuals inquired about risk factors and recovery due to uncertainties surrounding long-term complications [19]. Those with over a 6-month diagnosis focused on themes related to available support, considering the potential decline in function and quality of life in the long term after stroke [20]. Recurrence further shaped concerns, with first-time stroke survivors focusing on preventing future episodes, while those with previous strokes emphasised moving forward, including aspects such as working and driving after stroke. These findings resonate with the theory of psychological adjustment in long-term diseases, progressing from initial stress and uncertainty about illness to eventual acceptance and emotional equilibrium [21].

The preferred method for delivering information involved a combination of verbal and written materials. Verbal communication allows for personalised information sharing, while written materials offer the advantage of revisiting information after discharge. Our sample suggested developing pictorial materials with large prints, which was recommended in the literature to aid information retention in the long term [22, 23]. Additionally, our study indicated an optimistic approach to presenting information, considering that some stroke survivors experienced despair and helplessness with current stroke-related written materials [24]. Participants proposed delaying information delivery until the rehabilitation phase, which acknowledges the challenge of retaining information in the early stages poststroke [25].

Specialist neurologists, GPs, and nurses emerged as the preferred healthcare professionals for discussing stroke-related matters. Although physiotherapists were not among the most frequently selected HCPs, their role in information-sharing is important due to the time they spend facilitating and applying rehabilitation techniques. This suggests a broader involvement in survivors’ education beyond merely performing exercise therapy. Finally, reiterating information was deemed necessary as survivors’ information needs evolve with time.

However, this study had limitations. Firstly, recruitment from a specific area will limit the generalisability of the outcomes, as other local and international facilities have different approaches and contact points from the one shown in our study. Secondly, the exclusion of participants with cognitive impairment. Conducting in-depth interviews might have offered deeper insights into the reasons behind the subgroup differences.

Stroke survivors’ information-seeking pattern

To conclude, post-stroke information-seeking displays two discernible patterns: during the acute phase, the focus is on reducing stroke recurrence and restoring function. However, in the chronic phase, attention shifts towards adapting to the new life poststroke, as outlined in Fig. 2. This could help healthcare professionals identify the most appropriate information based on the recovery phase, type, and time elapsed since diagnosis.

Accordingly, an optimal approach for stroke survivors involves tailoring information delivery based on these distinct patterns while considering the different stroke populations and emphasising suitable delivery methods and timing. Such an approach could enable healthcare providers to empower survivors to manage their condition more effectively. Further research is needed to investigate whether providing this tailored information could improve stroke survivors’ long-term outcomes.