Plain English Summary
Background and study aims
This study will examine everyday cultures of restrictive practices in the care of people living with dementia (PLWD) during an acute hospital admission in order to understand the nature, rationales, and experiences of PLWD, their families, and ward staff. Data collection will be carried out within nine wards: six acute wards (three general medicine and three older person’s care) and three specialist inpatient mental health wards (dementia specialist mental health in-patient wards across trusts in two regions of the UK (Yorkshire and the South East) and health boards in Wales. 30 days of observation will occur in each acute ward alongside 15 days of observation will occur in each mental health ward.
Who can participate?
Ward staff, patients and carers and family members of patients with a diagnosis or query of dementia when admitted to hospital
What does the study involve?
1. Observing routine ward care practices within and across shifts (am/pm) and different staffing structures (weekends/nights), including handovers
2. Shadowing the work of ward staff and wider hospital staff involved in the care of PLWD
3. Observing clinical assessments, team meetings, and where possible discharge and transfer meetings
4. Observing to identify which patients experience restrictive practices, what forms they take, and if there are any individual patients or groups who appear to be excluded, exempt, or experience increased use of these practices
5. Observing the care of PLWD perceived as at higher risk of adverse incident or ‘challenging’ behaviour
6. Ethnographic interviews (less than 10-minute conversations during ethnographic observation) with ward staff
7. Document analysis of ward records
8. Interviews carried out with PLWD, their care partners and families to explore the recognition, understandings, and experiences of restrictive practices.
9. Follow-up interviews after discharge in the community with PLWD and their family members participating in the ward ethnography and interviews. Analysis will inform the delivery of evidence-based strategies to support best practice in the care of PLWD at the ward level, including open-access training and NHS service organisational interventions.
What are the possible benefits and risks of participating?
This study is unlikely to directly benefit patient participants (which is explained clearly in the Patient and Family Member Information sheet). This project does, however, give people living with dementia a rare opportunity to contribute to research which may potentially benefit other people living with the condition and their families.
This is an observational study and will carry no direct risks to participants' physical health. No changes to lifestyle are expected, nor any freedom of action. It is possible that in some cases observations may cause distress or discomfort, at which point observations will cease.
Where is the study run from?
University of West London (UK)
When is the study starting and how long is it expected to run for?
March 2022 to August 2024
Who is funding the study?
National Institute for Health and Care Research (NIHR) (UK)
Who is the main contact?
Andy Northcott, andy.northcott@uwl.ac.uk
Study website
Contact information
Type
Principal Investigator
Contact name
Prof Katie Featherstone
ORCID ID
http://orcid.org/0000-0003-4999-8425
Contact details
University of West London
Ealing
W5 5RF
United Kingdom
+44 (0)20 8231 2468
katie.featherstone@uwl.ac.uk
Additional identifiers
EudraCT/CTIS number
Nil known
IRAS number
313816
ClinicalTrials.gov number
Nil known
Protocol/serial number
CPMS 53197, IRAS 313816
Study information
Scientific title
Understanding the everyday use of restrictive practices in the care of people living with dementia during a hospital admission: reducing inappropriate use, identifying good practice and alternative approaches to reduce risk and improve care
Acronym
Study hypothesis
The aim of this in-depth ethnographic study is to examine everyday cultures of restrictive practices in the care of people living with dementia (PLWD) during an acute hospital admission. It will explore what forms these practices take, the rationales for their use, and the experience of these practices from the perspectives of PLWD, their families, and ward staff. It will identify evidence-based (and alternative) strategies in the care of PLWD that are achievable, safe, and transferrable across care settings. The objectives are to:
1. Provide a detailed examination of the social and organisational context in influencing the everyday care of PLWD to understand the (a) nature of restrictive (and alternative) practices within acute wards (b) circumstances and contexts of use (c) care practices when PLWD are perceived as at risk of ‘falls’ or ‘wandering’, or when their behaviour is perceived as ‘challenging’, ‘disruptive’ or ‘aggressive’.
2. Examine the recognition, understandings, and experiences of restrictive (and alternative) practices during an admission from the perspectives of PLWD and their families.
3. Examine staff perspectives (a) their understandings and recognition of restrictive practices (b) the formal frameworks and informal rationales drawn on to inform the care of PLWD.
4. Translate the findings into evidence-based strategies to support best practice and alternative approaches in the care of PLWD at ward level.
Ethics approval(s)
Approved 15/07/2022, London - Bromley Research Ethics Committee (Temple Quay House, 2 The Square, Temple Quay, Bristol, BS1 6PN, UK; +44 (0)207 104 8105; bromley.rec@hra.nhs.uk), ref: 22/LO/0448
Study design
Multi-site ethnographic study
Primary study design
Observational
Secondary study design
Case series
Study setting(s)
Hospital
Study type
Quality of life
Patient information sheet
Not available in web format, please use contact details to request a participant information sheet.
Condition
Dementia
Intervention
Ethnography and in-situ interviews about the everyday use of formal and informal restrictive practices across a range of hospital settings known to admit people living with dementia.
Ethnographic data collection will be carried out within nine wards: six acute wards (three general medicine and three older person’s care) and three specialist inpatient mental health wards (dementia specialist mental health in-patient wards across trusts in two regions of the UK (Yorkshire and the South East) and health boards in Wales. 30 days of observation will occur in each acute ward alongside 15 days of observation will occur in each mental health ward (n = 225 days of observed practice).
Intervention type
Other
Primary outcome measure
1. The visible work of nurses and healthcare assistants involved in delivering everyday care to people living with dementia as staff make decisions relating to the use of restrictive practices during shifts, assessed using ethnographic observation over four hour periods
2. Routine practice and responses when interacting with people living with dementia explored using short ethnographic interviews as care is delivered over four hour periods
3. The potential impacts and consequences of restrictive practice on patient experiences and discharge pathway in the 3 months after discharge, assessed with follow-up interviews with people living with dementia and family carers at monthly intervals
Secondary outcome measures
There are no secondary outcome measures
Overall study start date
01/03/2022
Overall study end date
31/08/2024
Reason abandoned (if study stopped)
Eligibility
Participant inclusion criteria
Ward staff, patients and carers and family members of patients with a diagnosis or query of dementia when admitted to hospital
Participant type(s)
Patient, Health professional, Carer
Age group
Mixed
Sex
Both
Target number of participants
140
Participant exclusion criteria
Patients without a diagnosis or query of dementia will not be included in observations
Recruitment start date
01/09/2022
Recruitment end date
31/08/2024
Locations
Countries of recruitment
England, United Kingdom
Study participating centre
Leeds and York Partnership NHS Foundation Trust
2150 Century Way
Thorpe Park
Leeds
LS15 8ZB
United Kingdom
Sponsor information
Organisation
University of West London
Sponsor details
St Mary's Road
Ealing
London
W5 5RF
England
United Kingdom
+44 (0)20 8231 2468
SBMSadmin@uwl.ac.uk
Sponsor type
University/education
Website
ROR
Funders
Funder type
Government
Funder name
National Institute for Health and Care Research
Alternative name(s)
National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
Funding Body Type
government organisation
Funding Body Subtype
National government
Location
United Kingdom
Results and Publications
Publication and dissemination plan
Planned publication in a high impact peer-reviewed journal, accompanied by open access report, online training and public events.
Intention to publish date
01/03/2025
Individual participant data (IPD) sharing plan
The datasets generated during and/or analysed during the current study are not expected to be made available. For reasons of participant anonymity, the full dataset for this study will be stored privately and securely by the University of West London and destroyed after 5 years. Anonymised sections of data will be published where appropriate, for example in academic journals.
IPD sharing plan summary
Not expected to be made available
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| HRA research summary | 28/06/2023 | No | No |