Authors' objectives: Many people with long-term neurological conditions (e.g. multiple sclerosis, spina bifida) live independently and manage complex health needs, including mobility and sensory limitations which mean they have a high risk of pressure ulcer development. Despite their high risk, appropriate pressure ulcer prevention support and resources are often lacking. Pressure ulcers are patches of damaged skin and tissue. They can be caused by lying or sitting in one position for too long. Pressure ulcers can be a problem for people with conditions which make it harder to move.

Authors' results and conclusions: The study highlights the significant impact and complexities of managing pressure ulcer prevention activities at home, for people with long-term neurological conditions, carers and personal assistants. By understanding these complexities from different perspectives, we were able to develop a systems map and Theory of Change pathway informing future intervention development and evaluation.

Authors' methods: We used a partnership approach based in the participatory research paradigm, with extensive input from those whose lives are the focus of the research. The study comprised four interlinked work packages: Work package 1 – Development of two co-operative inquiry groups Work package 2 – Semistructured interviews and/or participation via a smartphone app Work package 3 – Professional and strategic stakeholder engagement Work package 4 – Systems mapping and Theory of Change pathway development Iterative, qualitative data analysis was undertaken with emerging findings from each work package informing subsequent elements of the study. We acknowledge that despite our best efforts (incorporating targeted National Health Service and third-sector recruitment), the ethnic diversity of our research was not as representative as we had intended. We have included work to address this lack of diversity in our next study, including dedicated community workshops to explore the cultural relevance and appropriateness of our proposed intervention.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR136264

Year Published: 2026

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/GJSC0721

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/GJSC0721

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk