ABSTRACT
Introduction: HEADS: UP is a psychoeducational self-management intervention to help stroke survivors cope with symptoms of anxiety and depression. During COVID 19 the HEADS: UP (Helping Ease Anxiety and Depression after Stroke) pilot randomised controlled trial (protocol: NCT04985838) was adapted at short notice for online delivery. The Project Advisory Group (PAG) or Patient and Public Involvement and Engagement group comprising 5 stroke survivors, a family member, and 2 stroke health professionals provided first-hand experience and advice to help develop resources required to enable stroke survivors negotiate the technology and 'get online'. Method(s): The PAG met 4-6 weekly online with HEADS: UP researchers;interim contact was by phone and email. They tested, advised, and offered personal reflections on/experiences of i) research processes e.g. online screening/recruitment, data collection and ii) intervention delivery e.g. suitability of Zoom for weekly HEADS: UP sessions, and accessibility of an online community platform, Padlet. Result(s): The PAG helped improve accessibility of pre-existing HEADS: UP research and intervention materials e.g. study Welcome Packs. Their 'hands-on' experiential approach also informed development of novel resources e.g. How to use Padlet. PAG members reported benefiting from their reciprocal relationship with researchers: "Everything changed after COVID . . . working online with HEADS: UP made me feel . . . important!" Their input enabled participants to successfully navigate online screening/ recruitment, complete research questionnaires online, and take part in the online course (if randomised to the intervention). Conclusion(s): The PAG's first-hand experience and advice enhanced HEADS: UP online research processes and intervention delivery for stroke survivor participants.