Pressure Ulcer Prevention at Home 2 (PUP@home2): Self-management intervention development and user testing for people with Long-term Neurological Conditions

AIM: Develop and user test an interactive, multi-component intervention to support Pressure Ulcer (PU) prevention and self-care, for people with Long-Term Neurological Conditions (LTNCs), their carers, Personal Assistants (PAs) & health professionals.

BACKGROUND: Many people with LTNCs (e.g. Multiple Sclerosis, Spina Bifida) live independently, managing complex needs and fulfilling other family/work/society roles. Due to constant/fluctuating/escalating mobility limitations, they are at high risk of PU development.

They often self-manage at home, with or without support from informal carers or PAs or input from health/social services. Despite their high risk, which leads to major quality of life deficits, exposure to professionals with PU expertise is lacking. Therefore, it is vital that people with LTNCs and their informal carers and PAs are able to recognise and react to changes in risk and negotiate care escalation.

This application has been co-developed with the Pressure Ulcer Research Service User Network (PURSUN) and stakeholders from PUP@home1, an ongoing HS&DR study to develop a Theory of Change (ToC) pathway, to facilitate intervention development. PUP@home1 indicates that many people with LTNCs are unaware of their PU risk and prevention. They often don't know where to escalate skin problems and are not always listened to by health professionals when they do.

Participants indicated the need for flexible PU prevention strategies to fit within their busy lives, self-care and associated support mechanisms. In this application we are seeking funding to continue this much needed work. Our proposed intervention incorporates an online platform to support PU prevention self-care.

DESIGN: Participatory approach to intervention development and testing, guided by the MRC complex intervention framework and building on the PUP@home1 partnerships and ToC, with 2 work packages (WP):

• WP1, Participatory Intervention Development & Pre-Testing - Multi-stakeholder, Co-Creation and Evaluation (CCE) groups will iteratively design, test and refine intervention component prototypes, pre-testing within the groups and with external stakeholders. We will use a range of methods, including think-aloud and semi- structured interviews and written feedback.

• WP2 Full Intervention Field Test in the ‘real world’ context - incorporating automated data capture, semi- structured interviews and validated Health Information Technology Usability Evaluation Scale.

ANALYSIS: WP1 analysis will be underpinned by the principles of Rapid Qualitative Research. CCE group discussions, workshops and interviews will be summarised on Rapid Assessment Procedure (RAP) sheets, which will form the basis of an analytical framework. Pre-test data will go back to CCE groups for participatory analysis workshops, using a framework approach.

WP2 analysis will incorporate simple descriptive statistics for data capture and Health-ITUES questionnaire. Qualitative data will be analysed using the approach described above. Stakeholder workshops will be utilised throughout to triangulate and interpret data across different activities and agree the final intervention.

TIMELINE: 24 months

IMPACT & DISSEMINATION: We ultimately aim to reduce the number and severity of PUs in people with LTNCs. Our dissemination strategy will focus on the research findings and the intervention via the established networks of collaborating Stakeholders, relevant conferences and key journal publications.