Patients who had a stroke often disengaged from rehabilitation decision-making at the same time they were being asked to participate, when emotional distress and information gaps were greatest, according to a recent study.
Patients who had a stroke frequently became passive in rehabilitation decision-making when one-way clinician communication, insufficient informational support, and discontinuity between hospital and community care increased decision-making burden, according to a qualitative meta-synthesis published in BMJ Open. Across ten qualitative studies, patients reported increased decision-making burden associated with one-way communication, insufficient or poorly timed information, and discontinuity in rehabilitation services.
The researchers conducted a qualitative meta-synthesis using methodology from the Joanna Briggs Institute (JBI) and reported results in accordance with Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Databases searched included Cochrane Library, PubMed, Embase, Scopus, Web of Science, China National Knowledge Infrastructure, China Biomedical Literature Database, and Wanfang Database from inception through March 1, 2025, yielding 1,502 records. Following removal of duplicates and screening, ten studies were included, all rated Grade B for moderate risk of bias. Thirty-one qualitative findings were extracted, grouped into ten categories, and synthesized into three integrated domains: patient-related factors, family-related factors, and healthcare provider or environmental factors. Analysis was guided by Social Cognitive Theory, emphasizing interactions among personal emotions, environmental context, and behavioral engagement.
At the patient level, negative emotions following stroke were reported to interfere with patients' rational thinking, cognitive processing, and participation in rehabilitation decision-making, and were associated with lower self-efficacy. Patients reported being invited to participate in rehabilitation decisions at times when emotional distress limited their capacity to engage. One participant stated, "The doctor asked me to help make decisions about rehabilitation, but my mind was blank and confused." Over time, unmet expectations regarding recovery further diminished engagement, particularly when functional improvement did not align with early hopes. Limited health literacy and lower educational attainment compounded these effects, leading many patients to defer decisions to clinicians.
Family dynamics exerted a dual influence. Emotional support from relatives enhanced confidence and facilitated engagement, whereas guilt related to family burden and financial responsibility constrained decision-making. Economic considerations were central, with long-term rehabilitation costs forcing trade-offs that narrowed perceived options.
Patients described paternalistic communication, limited bidirectional dialogue, and goal-setting processes that excluded patient preferences, alongside information gaps and fragmented transitions between hospital and community rehabilitation that increased decision fatigue and left them navigating rehabilitation decisions with limited support.
The researchers noted limitations, including the moderate risk of bias across all included studies, limited methodological transparency, and restricted geographic representation, primarily from developed countries. Despite these limitations, the synthesis identified emotional distress, clinician communication practices, and rehabilitation system factors as recurring influences on patient participation in shared decision-making, wrote lead study author Shuaiqi Zang, of Hangzhou Normal University Affiliated Hospital in China, and colleagues.
The researchers reported no competing interests, and the study was supported by the 2025 Zhejiang Provincial Health Science and Technology Program.
Source: BMJ Open
