Title: Pressure Ulcer Prevention at Home: Pressure ulcer prevention for people with long-term neurological conditions (LTNCs) who self-manage care and live at home. A participatory intervention development approach
Funder: Department of Health and Social Care

Abstract: Aim_x000D_ To understand what resources (interventions) people need to spot and manage pressure ulcer risk. The resources are for:_x000D_ • People with long-term neurological conditions (LTNCs) which impact movement, who self-manage care and live at home. _x000D_ • Their informal carers (e.g. family members and friends)_x000D_ • Their personal assistants (a type of paid carer)._x000D_ _x000D_ Background_x000D_ Pressure ulcers (sometimes called bedsores) are areas of damaged skin and tissue. They are often caused by lying or sitting in one position for too long. Pressure ulcers can cause a lot of distress, leading to pain, long hospital stays, surgery and even death. Preventing and treating pressure ulcers costs a lot of money (around 4% of the NHS budget). Most pressure ulcers can be prevented, if people have the right support. In hospitals, there are lots of things in place to prevent pressure ulcers (e.g. risk assessment tools and equipment). However, there is little support for people who self-manage care and live at home._x000D_ _x000D_ We will focus on people with LTNCs that impact mobility e.g. Multiple Sclerosis, Spina Bifida and Spinal Cord Injury. People living with LTNC can be at risk of pressure ulcers if they are unable to change position regularly. Some people also lack skin sensation, meaning they can’t feel and react to early skin damage. _x000D_ _x000D_ People with LTNC often self-manage their care and can fall between gaps in health and social care services. We will explore how to make pressure ulcer prevention part of wider self-care. We will also look at how carers (informal carers and paid personal assistants) can support pressure ulcer prevention. _x000D_ _x000D_ The Project_x000D_ The project is split into 4 stages:_x000D_ _x000D_ Stage 1 - We will set up two groups of people who will work as lay researchers. The first will include people with LTNC and informal carers. The second will be for paid personal assistants. Working separately, each group will share their own experiences of pressure ulcer prevention. _x000D_ _x000D_ Stage 2 - following training, members of the 2 groups will interview others with LTNC, informal carers and paid personal assistants. _x000D_ _x000D_ Stage 3 - We will hold workshops with strategic partners (e.g. nurses, GPs, physios and charity representatives). We will explore their perspective of PU prevention and how our intervention may fit with existing services. _x000D_ _x000D_ Stage 4 - The groups from stages 1 and 3 will come together to share their work and identify what helps / hinders pressure ulcer prevention. They will create a map of the issues and use that map to decide which areas would most benefit from extra intervention.

Lay abstract: BACKGROUND_x000D_ Improved life expectancy, changes to health/social care organisation, societal changes in attitudes to living with disability and personalised care funding has led to increasing numbers of people with Long-term Neurological Conditions (LTNCs) (e.g. Multiple Sclerosis, Spina Bifida, Spinal Cord Injury and Muscular Dystrophy) living and working while managing complex health needs, as well as fulfilling other roles in the family and society at large. Due to constant, fluctuating and escalating (gradual or acute in response to illness) mobility limitations, this population are at high risk of pressure ulcer (PU) development. They often self-manage their care needs independently at home, with or without support from informal carers or Paid Personal Assistants (PPAs) or input from health/social services. _x000D_ _x000D_ Despite their high risk of PU development, which leads to major QOL deficits, exposure to professionals with PU expertise is lacking. Therefore, it is vital that people with LTNC and their informal carers or PPAs are able to recognise and react to changes in risk and negotiate care escalation. This application focusses on facilitating PU prevention in this specific and often hidden, high-risk population._x000D_ _x000D_ AIM: To develop a systems map and Theory of Change (ToC) pathway to facilitate the development of a multi-component intervention to support PU risk identification and management in partnership with people with LTNC who self-manage care and live at home and their informal carers and PPAs._x000D_ _x000D_ DESIGN: We will use a partnership approach based in the participatory research paradigm with extensive input from those whose lives are the focus of the research .he work will incorporate 4 work packages:_x000D_ _x000D_ • WP1- Development of two co-operative Inquiry Groups (CIGs) (1: individuals with LTNC and their informal carers; 2: Paid Personal Assistants) to underpin and support the design, management, data collection, analysis and conclusions of the work and explore their experience of identifying and self-managing PU risk (or supporting others to)._x000D_ • WP2- Peer-to-peer Interviews, to explore PU prevention/risk management with other people with LTNCs, informal carers and Paid Personal Assistants._x000D_ • WP3- Stakeholder engagement to explore the perspectives of professional and strategic partners on PU prevention at home, exploring issues including the need for services to respond to informed, empowered service users, facilitating self-care and blame/stigma avoidance_x000D_ • WP4- Participatory Systems Mapping and Theory of Change (ToC) Pathway development workshop, to provide a visual representation of the systems associated PU prevention from the perspective of key stakeholders (from WP1 and 3); and develop a ToC pathway to underpin intervention development._x000D_ _x000D_ ANALYSIS: Data analysis will be informed by key principles of rapid qualitative research. Analysis will be iterative and triangulate data collected over the course of work packages 1-4. Analysis will be conducted by the CIGs, using a framework approach to data co-analysis, which has been used successfully in other research._x000D_ _x000D_ OUTPUTS: A systems map and ToC pathway, detailing required intervention components, preconditions, contextual requirements, long-term outcomes, impacts and explanatory rationale and assumptions. A review of all suggested components of the intervention will be undertaken by the CIGs to consider ongoing development/evaluation and immediate dissemination impact.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL;SKIN