"Coming home was a disaster, I didn't know what was going to happen": a qualitative study of survivors' and family members' experiences of navigating care post-stroke

PurposeUnderstanding navigational barriers and facilitators has the potential to advance equitable stroke care delivery. The aim of this study was to explore, using a qualitative study, the experiences of stroke survivors and their families as they journey through the stroke care system, both before and during the COVID-19 pandemic.MethodsIn-depth semi-structured interviews were conducted with 18 stroke survivors and 12 family members during 2021 and 2022. Participants were recruited through voluntary organisations, social media, and stroke support groups. Data analysis followed a systematic process guided by the framework method with steps including familiarisation, coding, framework development, and charting and interpretation.ResultsThe experiences of navigating stroke care were particularly challenging following discharge from hospital into the community. Barriers to stroke care continuity included insufficient appropriate services and information, unsatisfactory relationships with healthcare professionals and distressed mental health. There were particular navigational challenges for survivors with aphasia. Facilitators to effective navigation included having prior knowledge of the health system, harnessing support for care co-ordination, and being persistent.ConclusionGreater support for patient navigation, and person-centred referral pathways, particularly during times of increased pressure on the system, have the potential to improve access to services and wellbeing among stroke survivors. Interactions between practitioners and stroke survivors need to be simple, empathetic, and transparent, using communication tools when needed for older stroke survivors or those with a communication or cognitive disabilityNavigation of the care system is a significant challenge and source of emotional distress for stroke survivors and their families, likely leading to foregone care and inequity in access to services. This indicates a need for both clearer, more standard stroke care pathways that are easier to navigate, and evidence-based patient navigation support programmes.The development of navigational interventions and stroke care pathways would benefit from co-design with motivated and knowledgeable stroke survivors.Taking advantage of the wealth of lived experience, and stroke survivors' capacity and passion for advocacy, has the potential to empower the wider stroke community.