Background 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. Aims To develop a Theory of Change pathway, which will underpin future development of a multicomponent intervention package supporting pressure ulcer risk identification and management, in partnership with people with long-term neurological conditions who self-manage care and live at home, their informal carers and personal assistants. 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. Findings Overall, 74 participants contributed across the 4 work packages. This incorporated 31 service users, 8 carers, 9 personal assistants and 26 professional stakeholders. The findings indicate the complexities of pressure ulcer prevention for this population, who are often fulfilling multiple roles in society (i.e. in their families, communities, work) alongside onerous self-care routines. Systemic and professional barriers were found to hamper people’s ability to self-care, support others and seek help. Areas of learning were highlighted around developing safe routines, third sector and peer support, learning about pressure ulcer prevention, navigating complex systems, adapting and reacting to change, perceptions of risk, risk negotiation and the role of non-clinical carers. By collaboratively reflecting on these findings with key stakeholders (service users, carers, personal assistants, professional/strategic partners), we were able to identify points in the system amenable to change. This underpinned the development of a Theory of Change for a multicomponent intervention incorporating awareness raising, routine guidance, escalation guidance and communication components (supported by preconditions, contextual requirements, long-term outcomes, impacts and explanatory rationale). Limitations 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. 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. Future work Funding has been awarded for Pressure Ulcer Prevention at Home 2 (PUP@home2): Self-management intervention development and user testing for people with long-term neurological conditions (NIHR163165) to support pressure ulcer prevention and self-care, based on our learning from this study. Funding This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR134029.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)