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

Delia Muir; Laura McLarty; Jessica Drinkwater; Carole Bennett; Yvonne Birks; Andrea Broadway-Parkinson; Vanessa Cooksey; Phil Gleeson; Christy Holland; Lisa Ledger; Daniella-Jade Lowe; Andrea McGoverin; Jane Nixon; Tanya Perry; Heidi Sandoz; Brian Rawson; Yvonne Rawson; Nikki Stubbs; Kay Walker; Helen Whitaker; Susanne Coleman

doi:10.1016/j.jtv.2024.08.007

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

J Tissue Viability. 2024 Sep 2:S0965-206X(24)00131-1. doi: 10.1016/j.jtv.2024.08.007. Online ahead of print.

Authors

Delia Muir¹, Laura McLarty², Jessica Drinkwater³, Carole Bennett⁴, Yvonne Birks⁵, Andrea Broadway-Parkinson⁴, Vanessa Cooksey⁴, Phil Gleeson⁴, Christy Holland⁶, Lisa Ledger⁷, Daniella-Jade Lowe⁴, Andrea McGoverin⁴, Jane Nixon⁸, Tanya Perry⁴, Heidi Sandoz⁴, Brian Rawson⁴, Yvonne Rawson⁹, Nikki Stubbs¹⁰, Kay Walker⁴, Helen Whitaker⁴, Susanne Coleman¹¹

Affiliations

¹ Leeds Institute of Clinical Trials Research, University of Leeds, Leeds, LS2 9JT, UK. Electronic address: D.P.Muir@leeds.ac.uk.
² Leeds Institute of Clinical Trials Research, University of Leeds, Leeds, LS2 9JT, UK.
³ Centre for Primary Care and Health Service Research, The University of Manchester, UK.
⁴ Pressure Ulcer at Home Co-operative Inquiry Group, UK.
⁵ School for Business and Society, University of York, UK.
⁶ Leeds Community Healthcare Trust, UK.
⁷ NIHR Coordinating Centre, 21 Queen Street, Leeds, LS1 2TW, UK.
⁸ Institute of Health Sciences, University, of Leeds, Leeds, LS2 9JT, UK.
⁹ Tissue Viability CNS, Hertfordshire Community NHS Trust, UK.
¹⁰ Independent Tissue Viability Nurse, UK.
¹¹ Leeds Institute of Clinical Trials Research, University of Leeds, Leeds, LS2 9JT, UK. Electronic address: s.b.coleman@leeds.ac.uk.

PMID: 39289092
DOI: 10.1016/j.jtv.2024.08.007

Abstract

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): 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.

Keywords: Community; Long term neurological conditions; Participatory research; Pressure ulcer prevention; Qualitative; Self-management; Systems mapping.