Abstract Background Transitioning home from organised stroke services poses many challenges for people with stroke (PWS) and their caregivers (CGs), requiring them to navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. Methods Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and their CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. Results Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. Conclusion Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. There is a need for more personalised and timely information-sharing to support individuals and caregivers effectively. A multi-faceted approach is recommended to alleviate anxiety, reduce delays, and provide equitable care for all involved.
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