Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study

PURPOSE: The aim of this study was to explore the experiences, needs, and preferences regarding follow-up perceived by people with stroke and healthcare professionals. METHODS: This is a qualitative exploratory study using focus groups. Patients and healthcare professionals, participating in a clinical visit in primary care or specialised care, were purposively sampled. Data were analysed using a framework of analysis developed by Krueger. RESULTS: Focus groups were conducted with two patient groups (n = 10, range 45–78 years) and two multidisciplinary healthcare professional groups (n = 8, range 35–55 years). The overarching theme elucidates stroke as a long-term condition requiring complex follow-up. Three organisational themes and six subthemes were identified. People with stroke discovered feelings and changes after returning home. In daily life, problems and feelings of abandonment became evident. Participants expressed experiences of unequal access to health care services. Barriers for accessing appropriate treatment and support included difficulties in communicating one’s needs and lack of coherent follow-up. Follow-up activities were well functioning in certain clinics but did not provide continuity over the long term. Participants made suggestions for a comprehensive, planned, and tailored follow-up to meet patient needs. CONCLUSION: Comprehensive long-term follow-up that is accessible to all patients is essential for equal support. Our findings raised awareness about problems discovered after returning home and the obstacles individuals face in communicating their needs. Structured follow-up, which is individually tailored, can empower patients.