Evaluation of the HOPE(S) Programme to end long-term segregation
Research type
Research Study
Full title
Evaluation of the National HOPE(S) Programme to end long-term segregation (LTS) for all children and young people, autistic people and/or people with learning disability in inpatient hospital settings.
IRAS ID
319279
Contact name
Alina Haines-Delmont
Contact email
Duration of Study in the UK
1 years, 9 months, 31 days
Research summary
Research Summary: Concerns have been raised about the use of long-term segregation (LTS) in inpatient mental health settings, particularly for autistic people and/or people with learning disabilities. In some cases, people are being locked in seclusion rooms for too long (sometimes for months and years at a time), with little access to outside space and a lack of basic necessities such as toilet roll.
To address these concerns, Mersey Care NHS Foundation Trust have designed HOPE(S), which is an NHS programme aiming to reduce the use of LTS and restrictive practices such as restraint and seclusion in children and young people, autistic people and/or people with learning disabilities in inpatient hospital settings across England.
The programme is being evaluated by an experienced research team from the Department of Nursing at Manchester Metropolitan University. The evaluation will be completely independent of the NHS and will measure how the project works and achieves its goals.
We will do this by looking at changes in the use of restrictive practices, quality of life, and other health outcomes following the introduction of HOPE(S). We will also interview up to 10 family members who care (or have cared) for somebody in long-term segregation and up to 30 professionals with experience of the HOPE(S) programme or working with somebody that has been identified by HOPE(S) as a case for concern. We will then conduct up to 6 focus groups with family members/carers of people in LTS, professionals and people with experience of LTS. Once we have the findings, we will bring everyone together to agree on some key recommendations of how to improve practice. The evaluation results are expected by the end of December 2024.
Summary of results: This study evaluated the National HOPE(S) Programme, which was introduced across England to help reduce long-term segregation for autistic people, people with a learning disability, and children and young people in mental health inpatient services. HOPE(S) used a human-rights and trauma-informed approach. It included training and support for clinical teams, structured work to identify barriers preventing people from leaving segregation, direct support from specialist HOPE(S) practitioners, and support for families.
The evaluation used both numerical information about outcomes and interviews and focus groups about people's experiences. In total, 122 people in long-term segregation received HOPE(S) support. The study also included information from family members and clinical staff. Seventy-three people contributed to the qualitative part of the study, including people with lived experience, family members, clinical staff, HOPE(S) and Respond practitioners, commissioners and regulators.
During the evaluation period, 83 of the 122 people supported by HOPE(S) (68%) moved out of long-term segregation at least once, and 24 were discharged into the community.
Among people for whom information was available both before and after HOPE(S), there were reductions in the use of physical restraint, chemical restraint and seclusion. Access to fresh air and participation in meaningful activities also increased. For example, average access to fresh air increased from about 8 days to 14 days per month, and the average number of meaningful activities increased from about 3 to 22 per month.
Quality of life also improved among the people who had completed the same quality-of-life measure before and after HOPE(S). However, this result was based on only nine people, so it should be interpreted with caution and cannot be assumed to represent everyone who received HOPE(S).
Staff outcomes also showed positive changes. Among staff who completed questionnaires at both time points, compassion satisfaction - the positive feelings people may gain from helping others through their work - increased, while burnout and secondary traumatic stress decreased. However, many staff who completed the questionnaire initially did not complete it again later, so these findings also need to be interpreted cautiously.
Eight family members had repeated measures of family functioning. None showed a level of change that met the specified criteria for a reliable or clinically meaningful improvement in overall family functioning. Because this was a very small group, firm conclusions cannot be drawn from this finding.
The interviews and focus groups helped explain the numerical findings. Participants described long-term segregation as profoundly isolating and harmful, with effects on people's wellbeing, relationships, dignity and sense of hope. Family members also described trauma, helplessness and isolation. Participants reported that HOPE(S) could help teams move away from approaches centred mainly on containment and risk towards more relational, personalised and trauma-informed care. Families described feeling more heard and supported, and staff described increased confidence, reflection and connection with their professional values. However, participants also identified continuing barriers, including risk-averse organisational cultures, difficulties maintaining changes after HOPE(S) support ended, and wider problems within services and systems.
Overall, the findings suggest that a rights-based and relational approach was associated with reductions in long-term segregation and other restrictive practices, alongside improvements in some individual and staff outcomes. However, the study did not include a comparison group, some outcome data were missing, and the numbers available for some measures were small. It is therefore not possible to say with certainty that HOPE(S) alone caused the changes observed. Further research is needed to understand whether these changes are sustained over time and whether similar approaches are effective in other settings.
REC name
South East Scotland REC 01
REC reference
23/SS/0044
Date of REC Opinion
10 May 2023
REC opinion
Further Information Favourable Opinion