HEADS: UP Aphasia: Helping Ease Anxiety and Depression Following Stroke Related Aphasia: Co-Creating an Aphasia-Friendly Mindfulness-Based Course

Background: People living with aphasia (pwa) after a stroke frequently suffer from anxiety and depression (Zanella et al., 2023). Mental and emotional health is currently the top priority for stroke rehabilitation and long-term care (Stroke Association, 2021), however mental health needs are frequently unmet for pwa. HEADS: UP, Helping Ease Anxiety and Depression following Stroke, is a stroke-specific adaptation of a standard Mindfulness-based Stress Reduction (MBSR) course that shows potential in supporting stroke survivors and their families self-manage symptoms of anxiety and depression (Lawrence et al., 2024;2025). This Stroke Association-funded doctoral study, HEADS: UP Aphasia, aimed to co-create with key stakeholders an aphasia-friendly version of HEADS: UP, and promote pwa’s access to a Mindfulness-based intervention. Methods: A systematic review was conducted in preparation of the co-creation study to evaluate the availability, feasibility and effectiveness of mind-body and creative arts therapies in promoting pwa’s wellbeing. Full-text screening, critical appraisal and data extraction were conducted independently by two reviewers. A segregated synthesis approach was used: qualitative data were synthetised through a Thematic Synthesis approach, whereas the Revised Effect Direction Plot technique was used to synthetise quantitative data. Findings were narratively and visually presented. This research adopted a participatory approach with the engagement of n=8 subgroups of stakeholders, including pwa, family members and Health Professionals. Stakeholders had different levels of involvement: Advisory Group, n=4 (consultation); individuals living with post-stroke aphasia, n=12, family members, n=1, and Health Professionals, n=25 (co-creation; feedback); pwa independent of the research, n=7 (feedback). Data and feedback were collected remotely through a questionnaire and online co-creation meetings (October-December 2021; Summer 2022) and analysed through Framework analysis to identify adjustments to course structure and materials. Results: Out of 113 identified studies, twenty-two studies were included (Mind-body: n=11; Creative-arts: n=11). A high variability of study design, intervention type, features and dosage, measured outcomes, study quality, and level of communication support provided was identified. Most of the gains were reported in relation to wellbeing, mood, quality of life, language, communication, cognitive skills. No evidence of harm was found. Three broad themes were identified: multivalued experience, impact on self, accessibility features. As part of the co-creation study, a template of the adapted course and samples for the main course materials were co-created. Adjustments included simplifying and reducing volume of text, adding bullet points, enhancing visuographic support, expanding resource formats (e.g. videos), reducing session length, duration and number of practices per session, implementing modelling and repetitions, using an uplifting tone. To ensure content coverage at a reduced pace, the course is structured into two levels of progressive learning and difficulty: Level 1 and 2. Conclusions: The systematic review highlighted provisional findings about the benefits of mind-body and creative arts interventions in promoting aspects of wellbeing (i.e., communication and reduced anxiety and depression) for some individuals with aphasia. However, findings are complex and need to be interpreted cautiously. The review posed a demand for further research in the field implementing rigorous methodology and inclusive aphasia-specific strategies. Co-creating HEADS: UP Aphasia with experts-by-experience informed the first stage development of an accessible and meaningful Mindfulness-based intervention to help pwa and their family self-manage mood disorders.