HEADS: UP Aphasia: co-creating a mindfulness based stress reduction self-management intervention for people with post-stroke aphasia

Introduction: HEADS: UP Aphasia (HUA), is Stroke Association-funded doctoral research. The aim is to co-create an aphasia-friendly version of HEADS: UP, a stroke-specific adaptation of Kabat-Zinn's Mindfulness-based Stress Reduction (MBSR) course to promote stroke survivors with aphasia and their family's self-management of mood disorders.
Method: To co-create the HEADS: UP Aphasia course a participatory approach based on iterative cycles of learning was implemented. Two groups of stakeholders were recruited: people with aphasia (pwa, n=12) and family members (n=1), and Health Professionals (HPs, n=28). The research was conducted online. Step 1: systematic review to identify existing mind-body and creative arts interventions to promote pwa's well-being. Step 2: questionnaire for HPs to define discussion topics for co-creation meetings. Step 3: co-creation meetings with the stakeholder groups to discuss adjustments for the course adaptation. Step 4: evidence framework to guide course-related decision-making. Step 5: course outline and materials adaptation. Step 6: consultation feedback from stakeholder groups and pwa not involved in the research. Step 7: additional changes and final version of the course.
Results: Examples of suggested adjustments included: manual available in aphasia-friendly text and videos; HUA YouTube channel; diary with visual support; animations to support engagement with practice instruction; shorter session length. Evaluation of co-creators' engagement within the project was positive.
Conclusion: An accessible and relevant MBSR course might promote pwa and their family's self-management of mood disorders. Involving experts by experience in the course development helped identify and address pwa's needs and preferences, and might contribute to enhance the intervention accessibility and acceptability.