Reflections on Patient and Public Involvement in the PROMISE Project
What is PROMISE?
PROMISE (PROactive Management of Integrated Services and Environments) is a CLAHRC affiliated initiative within Cambridgeshire and Peterborough NHS Foundation Trust which aims to provide staff and service users with a toolkit to support their journey towards eliminating reliance on force in mental health services (for further details of PROMISE see http://www.promise.global).
PROMISE was developed following discussion between an Expert by Experience and the Trust’s Clinical Director (who now co-lead the initiative) about concerns on the levels of physical restraint on inpatient wards arising from the Mind report (2013). As well as being co-led by an Expert by Experience the PROMISE steering group includes the Trust’s User & Care R&D Manager so it is perhaps unsurprising that gaining the perspective of service users is high on our agenda. In this document we will share with you our experiences of working with an advisory group made up of service users with lived experience of restraint at all stages of our qualitative project.
The qualitative project
Our qualitative project aimed to:
- Explore the subjective experience of restraint for service users during their time on adult mental health wards within the Trust.
- Elicit staff and service user views on proactive management of the ward environment and their suggestions for reducing restraint.
- Explore service user and staff understanding of and views about proactive care.
The service user advisory group (SUAG)
Valuing lived experience is central to the PROMISE ethos which is why we have always been extremely keen to ensure that the views of service users are hardwired into the project. Soon after the inception of the qualitative project, service users who had either directly experienced or witnessed restraint on Trust inpatient wards were invited to join the SUAG to advise on all aspects of the research design. Members of the advisory group provided a unique perspective and over the course of six meetings, the group were instrumental in helping us to shape many aspects of the qualitative study, from development of the research questions to the dissemination of the project’s findings.
Ethical issues
The advisory group played an especially important role in shaping the ethical design of the project. Restraint is such a sensitive topic that having the input from service users who had either experienced or witnessed restraint was invaluable. During our first session the group shared their insights into what it might be like for service users to reflect on their experiences of restraint during a research interview. The group’s insights gave us an improved understanding of some of the important ethical concerns that could arise from recruiting, consenting and interviewing service users to share their experiences of restraint and also provided some ideas about how these issues could best be managed. This enabled us to develop a study protocol that was ethically robust, and this was recognised by the ethics committee who commented that the excellent PPI had enhanced our application. We feel that this contributed to our being awarded ethics approval after one small amendment and more importantly meant that we were well prepared to sensitively handle any ethical issues which might arise through the course of the study.
Study Design
Early meetings with the advisory group also impacted on the design of our study. For example, the group members told us that witnessing restraint can be distressing for services users and that exploring the experiences of service users who had witnessed but not directly experienced restraint on the wards could provide valuable insight into restraint, its precursors and aftermath in the ward environment.
The SUAG were also involved with the coproduction of the recruitment advert, consent form and participant information sheet. Their input ensured that the language used was accessible and that participants were able to understand the aims of the study. Developing a user friendly information sheet was especially important in this study because we were asking participants to speak about a subject that many people are reluctant to discuss. The SUAG were very aware of the concerns that people who had experience of restraint might have about taking part in our study. They were able to draw on their insight to help us produce an information sheet that would allay fears about the interviews and encourage people to come forward.
In addition, the SUAG helped us to design a topic guide for the semi-structured interviews that would cause least distress to participants and included questions that would be relevant and meaningful to our participants and encourage them to share their experiences and insights.
Feedback on preliminary themes
After the interviews had been completed the SUAG was provided with a summary of the key themes emerging from the patient interviews. There was a guided discussion which enabled members of the group to express their thoughts about the findings, giving the researchers insight into service user interpretations of our key themes. There was also discussion of how findings from the project might be used and what recommendations for reducing restraint might arise from the study which we hope to incorporate into the final report.
Future involvement
One suggestion from the advisory group was that participants may be interested in learning more about the topic and having future involvement in shaping the design of the framework which comes out of the research. We therefore gave participants the option to be contacted about future events relating to the project and to be invited to join an advisory group informing future initiatives. Now that we have completed research interviews and with analysis well underway, our next step will be to relaunch the advisory group to inform the design of the PROMISE toolkit.
Challenges & benefits
The benefits of PPI to our qualitative project so far have included: enhanced ethics application, improved study documents and the development of a relevant, meaningful and sensitive interview guide.
There have been a few challenges relating to resources, such as the time involved in organising and running the groups. We also experienced attrition with some members no longer attending meetings as time passed. However, overall the impact of the SUAG has been extremely valuable. We feel that the group has contributed to a better and more meaningful project which will provide important insights into the experience of restraint that the Trust (and others) will be able to draw on as they continue on their journey to eliminating reliance on restraint in their mental health services.
For further details of co production in PROMISE see on the website.
| Examples of insights from the PROMISE service user advisory group | |
|
Methodology |
Ethical issues |
| · Speak to witnesses as well as those with direct experience.
· Interviewer should be someone neutral (not involved in care). · A good introduction is needed before the interview begins so that people feel comfortable and in control. · Give people the option to tick a box on the consent form if they want to be informed of events, workshops, being part of the toolkit advisory group. |
· People may feel uncomfortable speaking inside the wards.
· Patients may worry it will impact on their care. · Offer a routine phone call to see how they are after the interview. If distressed put in touch with a mental health professional. · Offer people the option of bringing someone with them. |
References
Mind. (2013). Mental health crisis care: physical restraint in crisis. London: Mind.
