Asma Sabri, Heidi Dombestein, Peter Dieckmann, Stephen J M Sollid, Karina Aase
{"title":"Variability in Stroke Journeys: A Qualitative Study of Experiences of Persons With Stroke.","authors":"Asma Sabri, Heidi Dombestein, Peter Dieckmann, Stephen J M Sollid, Karina Aase","doi":"10.1111/hex.70902","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Stroke recovery is highly individual and often involves multiple transitions across healthcare settings. While standardised stroke pathways aim to improve quality of care, less is known about how persons with stroke experience person-centred practice throughout their stroke journeys.</p><p><strong>Aim: </strong>To explore how persons with stroke experience person-centred practice throughout their stroke journeys.</p><p><strong>Methods: </strong>A qualitative study was conducted with persons who had experienced stroke in Norway. Data were collected through twelve semi-structured interviews and one written response. Reflexive thematic analysis, narrative construction and patient journey mapping were used to explore their experiences across the first 3 months post-stroke onset.</p><p><strong>Results: </strong>Participants' stroke journeys varied considerably in symptom presentation, needs and care experiences. Journey mapping visualised the differences in stroke journeys, healthcare interactions and experiences. Four themes were identified from the cross-interview analysis: (1) Professional competence and relational care, (2) When the stroke pathway ends, the person's journey continues, (3) Standardised care versus individualised needs and (4) Participation across the journey. Experiences were generally positive in the hyperacute and acute phases and more variable following discharge, with participants describing limited follow-up and access to rehabilitation, as well as unmet holistic needs.</p><p><strong>Conclusions: </strong>Persons with stroke experiences varied considerably throughout their stroke journeys, with discharge to home regarded as a stressful, insufficiently supported phase of care. Supporting continuity and individualised approaches to care should better meet the diverse needs of persons with stroke.</p><p><strong>Patient and public contribution: </strong>A user group consisting of persons with stroke and informal caregivers was recruited through a Norwegian stroke survivors association to be involved throughout the study. The user group consisted of seven persons, four females and three males, with ages ranging from their 40s to their 80s. The group included persons with stroke, persons with severe stroke, a person with aphasia, informal caregivers and the leader of the stroke association, who is also an informal caregiver. Two meetings, text communications and individual informal conversations took place with the user group to present and discuss the study design and obtain feedback on the interview content, format and procedures. The user group also supported participant recruitment. These participants took part in the interviews that form the basis of this study. Informal caregiver interviews were conducted in parallel as part of a related study. Preliminary findings were presented at the stroke survivors association's conference, and feedback was obtained.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70902"},"PeriodicalIF":3.4000,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13648015/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health Expectations","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1111/hex.70902","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Background: Stroke recovery is highly individual and often involves multiple transitions across healthcare settings. While standardised stroke pathways aim to improve quality of care, less is known about how persons with stroke experience person-centred practice throughout their stroke journeys.
Aim: To explore how persons with stroke experience person-centred practice throughout their stroke journeys.
Methods: A qualitative study was conducted with persons who had experienced stroke in Norway. Data were collected through twelve semi-structured interviews and one written response. Reflexive thematic analysis, narrative construction and patient journey mapping were used to explore their experiences across the first 3 months post-stroke onset.
Results: Participants' stroke journeys varied considerably in symptom presentation, needs and care experiences. Journey mapping visualised the differences in stroke journeys, healthcare interactions and experiences. Four themes were identified from the cross-interview analysis: (1) Professional competence and relational care, (2) When the stroke pathway ends, the person's journey continues, (3) Standardised care versus individualised needs and (4) Participation across the journey. Experiences were generally positive in the hyperacute and acute phases and more variable following discharge, with participants describing limited follow-up and access to rehabilitation, as well as unmet holistic needs.
Conclusions: Persons with stroke experiences varied considerably throughout their stroke journeys, with discharge to home regarded as a stressful, insufficiently supported phase of care. Supporting continuity and individualised approaches to care should better meet the diverse needs of persons with stroke.
Patient and public contribution: A user group consisting of persons with stroke and informal caregivers was recruited through a Norwegian stroke survivors association to be involved throughout the study. The user group consisted of seven persons, four females and three males, with ages ranging from their 40s to their 80s. The group included persons with stroke, persons with severe stroke, a person with aphasia, informal caregivers and the leader of the stroke association, who is also an informal caregiver. Two meetings, text communications and individual informal conversations took place with the user group to present and discuss the study design and obtain feedback on the interview content, format and procedures. The user group also supported participant recruitment. These participants took part in the interviews that form the basis of this study. Informal caregiver interviews were conducted in parallel as part of a related study. Preliminary findings were presented at the stroke survivors association's conference, and feedback was obtained.
期刊介绍：
Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including:
• Person-centred care and quality improvement
• Patients'' participation in decisions about disease prevention and management
• Public perceptions of health services
• Citizen involvement in health care policy making and priority-setting
• Methods for monitoring and evaluating participation
• Empowerment and consumerism
• Patients'' role in safety and quality
• Patient and public role in health services research
• Co-production (researchers working with patients and the public) of research, health care and policy
Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.
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