Pressure ulcer prevention for people with long-term neurological conditions (LTNCs) who self-manage care and live at home

Aim: To develop a Theory of Change (ToC) pathway to facilitate the development of a multi-component intervention package supporting pressure Ulcer (PU) risk identification and management, in partnership with people with Long Term Neurological Conditions (LTNC) who self-manage care and live at home, their informal carers and PAs. Methods: A participatory approach, with extensive input from those whose lives are the focus of the research, was used throughout the 4 interlinked work packages (WP): • WP1 – Development of two co-operative Inquiry Groups (CIGs) • WP2 - Semi-structured interviews and/or app participation • WP3– Professional and strategic stakeholder engagement • WP4–Systems mapping and Theory of Change (ToC pathway development Iterative data analysis was undertaken with emerging findings from each WP informing subsequent stages of the study. Findings: Overall, 74 participants contributed across the 4 WPs, incorporating 31 Service Users (SU), 8 carers, 9 Personal Assistants (PAs) and 26 professional stakeholders. We identified 8 key themes related to PU prevention, incorporating, learning, safe routines, third sector and peer support, navigating complex systems, adapting and reacting to change, perceptions of risk, risk negotiation and supporting roles. The findings indicate systemic and professional barriers which hamper people's ability to self-care and seek help. Conclusions: The study highlights the complexities and impact of managing PU prevention activities at home for people with LTNC and areas of learning for health professionals and systems. By understanding these complexities we developed a systems map, identified resource requirements and illustrated a Theory of Change (ToC) pathway, to underpin future work to develop and user test an interactive, multi-component intervention.