The impact of COVID-19 on community-dwelling people post-stroke and informal caregivers: a qualitative study

Background/ aims Little is known about the experience of people post-stroke and their informal caregivers during the COVID-19 pandemic. The aim of this study was to understand the challenges faced by people post-stroke and informal caregivers during the pandemic, as well as the impact on their healthcare support, lifestyle, and self-care behaviors. Methods A multi-perspective qualitative study was undertaken, with semi-structured interviews being carried out to sixteen participants: eight stroke patients and eight informal caregivers, mostly performed online. Reflexive thematic analysis was used, with data being independently coded and categorized before consolidated into themes and subthemes. Findings Three themes were derived from the data analysis: i) Perceived impact of COVID-19 pandemic, ii) What helped? - strategies to manage the distress provoked by COVID-19, and iii) The value of rehabilitation and physical activity, with findings highlighting the negative psychological impact of the pandemic. In response to the perceived lack of support and access to health and social services, participants highlighted the use of digital approaches and professional support. Conclusions Findingss: uggest the importance of self-management support and/or digital content in order to mitigate the impact of COVID-19. The involvement of peers, family members, friends or others seems to be an important strategy to increase motivation in remote rehabilitation and physical activity. Key points - Due to the impact of COVID-19 on people post-stroke and informal caregivers’ daily routines, both highlighted the importance of finding new and alternative ways of communicating, which included the use of digital approaches. - For some informal caregivers the pandemic was perceived as an opportunity to spend more time with the family and with the person with stroke. - People post-stroke admit having decreased their levels of physical activity during COVID-19 and increased the value given to rehabilitation and physical activity. - Involving peers or others, digitally or in-person, seems to be an important strategy when planning physical activity recommendations.