Sense of Agency and Negative Emotional Experiences Among Stroke Survivors: A Patient Journey Map Based on Qualitative Research

AIMS: To explore stroke survivors' experiences of sense of agency and negative emotions during recovery, and to develop a patient journey map. BACKGROUND: Stroke can disrupt perceived control and cause emotional distress, but how these experiences relate during recovery remains unclear. DESIGN: Descriptive qualitative study nested within a longitudinal study. METHODS: Purposive maximum variation sampling recruited 13 stroke survivors from a tertiary hospital in Henan, China. Sampling was guided by changes and fluctuations in sense of agency scores across four assessments, from before discharge to six months afterwards. Retrospective semi-structured interviews were conducted six months after discharge. Data were analysed using content analysis and a preliminary stage-theme framework. Reporting followed COREQ. RESULTS: Three themes and 12 subthemes were identified: illness shock, loss of sense of agency and distress marked by doubts and worries; further loss of sense of agency, intensified negative emotions and passive coping; and rebuilding sense of agency, alleviation of negative emotions and active coping. Physical limitations, disrupted roles, unclear information, rehabilitation setbacks and unmet support needs accompanied loss of agency and distress. Meaningful functional gains, clearer illness understanding, motivation and supportive relationships helped participants rebuild agency. CONCLUSIONS: Stroke survivors described loss and rebuilding of sense of agency alongside changes in negative emotions and coping. The patient journey map highlights opportunities for continuous, individualised support during recovery. RELEVANCE TO CLINICAL PRACTICE: Nurses should assess agency and emotional distress throughout recovery, particularly during care transitions and setbacks. Understandable information, meaningful goals, feedback on progress and patient participation may support agency. Withdrawal should prompt exploration of emotional concerns and practical barriers rather than assumptions about motivation. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.