Many people living with dementia and their carers find dealing with incontinence hugely distressing. Previous research by team members indicated that many carers want proactive support from the professionals they see (either healthcare or homecare workers), but healthcare professionals often feel ill-equipped to help carers or advise homecare workers.
This project builds on the team’s previous research which asked people living with dementia, carers and nurses to tell us what information and support they would find useful. The outcome of that research was a detailed, practical handbook specifically for carers.
The aim of this study is to build on this handbook to develop a new scalable, low-cost and sustainable intervention to be used by healthcare professionals to equip them to:
The research team aim to carry out interviews with primary care, community healthcare professionals and homecare workers in south London. These interviews will explore their experiences of delivering continence related care to a diverse range of people with dementia, their carers and support provided to homecare workers within south London. This will ensure that the intervention is developed in a way that ensures its relevance, usefulness and acceptability to people living within this area.
Drawing on complex intervention development guidance, the research team will take a theory, evidence and person-based approach to developing this intervention throughout the four phases of the study with public contributors and stakeholders involved throughout. The four phases comprise:
Phase 1: Rapid review and narrative synthesis of relevant literature to identify lessons learnt from other interventions delivered by healthcare professionals in primary and community settings to similar populations.
Phase 2: Semi-structured interviews with primary care and community healthcare professionals and homecare workers from different areas in England. The development of a prototype for the intervention by the research team and its refinement with public contributors and stakeholders.
Phase 3: Well-established field-testing methods will be used to assess and iteratively strengthen the real-world useability, usefulness and acceptability of the intervention. This will include ‘think aloud methods’ and semi-structured interviews which will include questions around the intervention’s acceptability and usefulness. The intervention will then be modified based on these findings and further interviews will follow. This process of rapid refinement will be guided by the person-based Approach referred to above.
Phase 4: The intervention will be finalised and made publicly available on www.continenceproductadvisor.org Promotion and dissemination activities will take place with the support of relevant professional bodies.
The research team want this resource to be used by as many primary and community health care professionals as possible so that they can support homecare workers and family carers. So, they will involve stakeholders and public contributors throughout this project and will ask people about the best way to make it both useful and accessible. This will include people living with dementia; carers; homecare workers; practice nurses; GPs; community nurses; NHS Clinical Commissioning Group/Integrated Care System representatives; continence specialists and dementia specialists.
Stakeholders: people living with dementia; carers; homecare workers; practice nurses; GPs; community nurses; NHS Clinical Commissioning Group/Integrated Care System representatives; continence specialists and dementia specialists.
Organisations: Alzheimer’s Society; Carers' Trust; Carers UK; Dementia UK; Homecare Association; London ADASS homecare provider network; Queen's Nursing Institute; Royal College of Nursing; and Skills for Care.
The anticipated benefit of this project is that it will result in the development of a low-cost intervention to support the delivery of practical and relevant continence self-management guidance to people living with dementia, their carers and homecare workers that is widely used by primary and community healthcare professionals. It will be freely available via www.continenceproductadvisor.org and we expect it to be adopted and recommended by a range of organisations and professional groups.
Dr Cathy Murphy, project lead, principal research fellow, University of Southampton
Dr Helen Chester, research fellow, King's College London