Managing uncertainty after a stroke: Development and acceptability of a brief psychological trauma-informed intervention to help recognise and reduce post-traumatic stress symptoms in stroke survivors
A stroke can trigger post-traumatic stress disorder (PTSD) in one in five survivors, yet current NHS care rarely spots or treats it. This matters because untreated PTSD after a stroke worsens disability, raises the risk of further strokes, and increases depression and suicide rates. The problem is growing: over two million stroke survivors aged 45 and older are expected in the UK by 2035, with annual costs approaching £75 billion. Existing PTSD treatments are often too long or resource-intensive for stroke patients, who also struggle with daily uncertainty that fuels their symptoms. The researcher will develop a brief trauma-informed intervention—delivered in person or by phone in just four sessions—designed specifically for stroke survivors. Over 48 months, the team will track 174 survivors’ symptoms and uncertainty levels, then refine the intervention through workshops and feedback from 30 survivors and carers. A final test with 25 survivors will assess whether the approach is acceptable and practical for routine stroke care. If successful, this work could give the NHS a scalable, low-cost tool to reduce PTSD prevalence, improve survivors’ quality of life, and cut long-term healthcare costs—all without requiring patients to access overstretched mental health services.
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BACKGROUND Over 2-million stroke survivors (45-years+) are expected in the UK by 2035 with costs almost trebling to ~£75 billion, annually. Although Post-Traumatic Stress Disorder (PTSD) affects 17-25% of patients in the first-year following stroke, effective recognition and treatments tailored to the complex needs of stroke survivors are limited. Left untreated, PTSD can lead to poor self-management and post-stroke outcomes (e.g., worse disability, recurrent events, depression, and suicide). Stroke survivors experience significant daily uncertainty, associated with unhelpful perceptions of stroke, maladaptive coping, and PTSD. This research will examine how intolerance of uncertainty (IU) affects the development and persistence of PTSD in stroke survivors to help transform treatment for post-stroke PTSD. Brief (≤4-sessions), tailored, and targeted psychological interventions that recognise the traumatic impact of a stroke, and can be delivered within routine stroke care, can help overcome difficulties in accessing more general/resource-intensive treatments through stretched mental health services. Although online PTSD treatments are promising, PPI feedback on their suitability for stroke survivors is currently mixed. AIMS I aim to: Develop a brief trauma-informed intervention, delivered in-person and/or via telephone, to address IU and unhelpful perceptions of stroke and help reduce PTSD symptoms in stroke survivors. Evaluate acceptability of the intervention to inform potential digitisation/development of staff training, full feasibility testing, and an effectiveness trial within routine stroke care in the future. METHODS This research, conducted part-time over 48-months, comprises three work packages (WPs), underpinned by the Medical Research Council Framework for Developing and Evaluating Complex Interventions and Intervention Mapping approach, with PPI embedded throughout. WP1 (Months 1-27, recruitment complete by month-15): 174-stroke survivors, recruited as inpatients/during community rehabilitation, will complete questionnaires measuring IU, illness uncertainty, illness perceptions, coping, and PTSD symptoms at 3, 6 and 12-months following stroke. The findings will be discussed in a workshop involving 8-10 stroke/psychology researchers, healthcare professionals (HCPs)/service providers, and PPI contributors to inform intervention development. WP2 (Months 24-36, recruitment complete by month-33): Three further workshops will help develop an intervention manual/materials. Intervention materials will be refined through feedback from 30-stroke survivors/carers, using a Think-Aloud approach. WP3 (Months 36-48, recruitment complete by month-42): A researcher will deliver the intervention to 25-stroke survivors and gather preliminary data on their characteristics and eligibility/recruitment/retention rates. Semi-structured interviews/focus group discussions with 45-patients/carers/HCPs/service providers will examine acceptability of the intervention, including digitisation and plans for future delivery within routine stroke care. A final workshop will help design a follow-on study. IMPACT AND DISSEMINATION This research will develop a brief treatment that is suitable for delivery within routine stroke care to help improve mental health, coping, self-management, and quality-of-life in stroke survivors and reduce the future prevalence and NHS costs associated with untreated PTSD in this population. The findings will help design follow-on studies, including potential digitisation/development of staff training to facilitate future intervention delivery within stroke care. The findings will be disseminated to researchers, HCPs/service providers/charities, policymakers, and patients/carers/wider public through several approaches, including newsletters, academic publications, briefing papers, blog posts, videos, podcasts, conferences, events, and press (months 9-48).
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