Co-producing socio-technical solutions for people living with complex multi-morbidity: developing methodology and assessing pros and cons of a RCT
Award Number
RP-DG-1213-10003Award Type
Programme Development GrantsProgramme
Programme Grants for Applied ResearchStatus / Stage
CompletedDates
2 June 2015 -30 November 2016
Duration (calculated)
01 years 05 monthsFunder(s)
NIHRFunding Amount
£89,821.00Funder/Grant study page
NIHRContracted Centre
East London NHS Foundation TrustContracted Centre Webpage
Principal Investigator
Professor Trisha GreenhalghPI Contact
trish.greenhalgh@phc.ox.ac.ukPI ORCID
0000-0003-2369-8088WHO Catergories
Methodologies and approaches for risk reduction researchTools and methodologies for interventions
Disease Type
Mild DementiaModerate Dementia
Severe Dementia
CPEC Review Info
| Reference ID | 158 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | RP-DG-1213-10003 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20150602 |
| End Date | 20161130 |
| Duration (calculated) | 01 years 05 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | East London NHS Foundation Trust |
| Contracted Centre Webpage | |
| Funding Amount | £89,821.00 |
Abstract
The key outputs will be: Preliminary field work in Site 1 Establish absorptive capacity for co-production at research sites Develop training programme and curriculum Pilot co-production in practice Optimise the logistics for the project Further develop research network Establish second case site Output 1: Preliminary field work in Site 1 We will conduct ethnographic fieldwork with 5 cases, and the ethnographic study of a call centre to gain a better understanding of the types of conditions and problems that people with complex multi-morbidity, and their carers, face day-to-day and the challenges in providing ALTs to support them. Setting This research will be based in Newham, and participants will be recruited via the community care teams at East London NHS Foundation Trust (ELFT). ELFT provides services for older people with memory and mental health issues which are focused on supporting individuals to stay independent in their own home. The services are provided through the Community Mental Health Team for Older People, Community Dementia Care Team, Diagnostic Memory Clinic, Intermediate Care for Older People and a range of In-Patient mental health services. Sample strategy The research will include five older people (index case) and their carers, with different levels of severity in cognitive impairment (including sub-clinical memory loss, mild cognitive impairment and mild, moderate and severe dementia) and a physical or chronic illness. Participants will be purposefully selected to present different health conditions, family settings and ethnic and social backgrounds. As in our previously successful ATHENE study, we will pay meticulous attention to the ethics of informed consent and assent, and follow published guidance for working with people with reduced capacity in this regard. The cases will include people with mild dementia who will give consent or assent directly, as well as those with more severe dementia for whom proxy consent will be sought from the primary carer following standard COREC guidance, according to a protocol previously approved by Harrow Research Ethics Committee for the ATHENE study. Design Qualitative data will be collected longitudinally for each case using ethnographic methods (including semi-structured and narrative interviews, observations, home tours and cultural probes). Each participant will be visited on up to six occasions over a 6 month period. During the first home visit, the purpose of the project will be explained to participants and they will be asked to consider taking part. During the second home visit, semi-structured and narrative interviews will be conducted, used adaptively between participants and carer(s) depending on the index individual s capacity and preferences, and focusing on routines, health, social support networks, technology and problems they experience. At the end of the interview, participants will be provided with cultural probe tools. On the third visit (approximately one week later) the cultural probe materials will be reviewed as part of a longer interview (e.g. we will look at any photographs with the participants and invite them to tell us why they took the pictures). Following the interview, a home tour will be conducted, in which the participants show the researcher different areas of their home to prompt further discussion about what they do and problems they face. Up to three subsequent home visits will take place over a 6 month period (which will be agreed between the volunteer participants and researcher). We will pilot the use of cultural probe materials to capture ethnographic data between these visits.
Plain English Summary
An aging population is fuelling interest in assisted living technologies (ALTs) to support ageing in place – that is, to enable older people to live independently at home, avoid or defer institutional care in later life and remain active participants in society. This includes telecare (e.g. alarms, sensors, reminders) and telehealth (remote monitoring for clinical health indicators) to provide health and social care services to the home. But while innovation is important, there is a well-documented gap between the development of new technologies and the consistent use of these technologies in practice. Current uptake, use and effectiveness of ALTs is low, and is, as our own research suggests, particularly low among people with cognitive and physical health problems. The reality of ALT adoption and use is that many people are assessed for, and fitted with, an ALT that ends up interfering with rather than facilitating daily living [Oudshoorn and Pinch 2003; 2008; Greenhalgh et al. 2013]. This is because older people have a highly individual set of technological and support needs – because no two people have the same combination of interacting illnesses, nor the same set of family, social and cultural circumstances, nor the same attitudes to, or ability to use, technologies. We believe there is a need to shift focus from designing technologies to creating personalised care solutions . A successful technological solution needs to be grown as part of a wider care system for that individual. Co-production is a participatory approach that aims to ensure that technologies and the services in which they are embedded co-evolve in a way that is grounded in the lived experience of users, who are fully engaged in the design and development process. The research programme will explore how to provide personalised and adaptive ALTs for people living with complex multi-morbidity (that is, both physical and cognitive impairment), This will include the implementation and evaluation of the co-production methodology, and adaptation of the technical and organisational sub-systems of care services to provide ongoing support to the ALT user. We plan to conduct qualitative and pilot research in order to understand the context of ALT provision for people with both cognitive and physical impairments in greater depth, pilot the co-production methodology in practice settings, and establish a second research site. A key piece of groundwork will be to consider the pros and cons of a randomised controlled trial for evaluating ALT introduction and use in people with complex multi-morbidity. Whilst the RCT is the gold standard for testing interventions, the central role of ‘personalisation’ raises practical and theoretical challenges which need to be carefully explored in this developmental phase.