Victoria Bird & Dr. Mike Slade – REFOCUS: researching recovery
22nd February 2012
Victoria Bird and Dr. Mike Slade of the Institute of Psychiatry at King’s College London explain how the REFOCUS programme aims to develop and evaluate a manualised recovery intervention for use within adult mental health community based teams in England.
REFOCUS is a five-year programme of research being carried out at King’s College London. The project aims to help community mental health services in the NHS in England become more focused on recovery and change the way staff and service users work together (Slade et al. 2011). In order to do this, REFOCUS involved the challenge of designing and testing a recovery intervention manual that could be used by staff working in community mental health teams.
As with a lot of research on recovery, the starting point was gaining an understanding of what recovery means to different people. In our case, we were guided by the now famous words of Bill Anthony:
“A deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful and contributing life even with the limitations caused by illness…” (Anthony, 1993)
We had four challenges when designing and testing a single intervention manual that can be used by all mental health staff with a range of service users:
- How do you define recovery in a useable way for research?
- What does a recovery-orientated service actually look like?
- How do you develop a manual for supporting recovery?
- How do you measure recovery?
In this article, we discuss how we overcame these four challenges in the REFOCUS project.
Challenge 1: How do you define recovery?
Anthony stresses the importance of recovery as an individual journey. By contrast, evidence-based practice requires terms and outcomes to be defined in advance. Within research, this process is termed “operationalising” – you need to know what you are researching, in order to research it.
Throughout the research programme it has been our aim to use the highest-quality research to answer our research questions. In this case, our approach involved a ‘systematic review’, which is the most robust method of collecting and synthesising available international literature. The focus of the systematic review was to identify existing models, themes and frameworks of recovery. In our study, we identified three key aspects to recovery: characteristics, processes and stages of the recovery journey (Leamy et al. 2011). In particular, the process of recovery was the largest element and included a number of themes organised into five categories: Connectedness, Hope and optimism, Identity, Meaning and purpose, and Empowerment (spelling out CHIME).
Challenge 2: What does a recovery orientated service look like?
Although we had now defined recovery, we needed to know what a recovery-orientated service looked like, and how you could go about implementing it within NHS community teams. Specifically, a consistent understanding of what recovery means in terms of working practices was needed (Meehan et al. 2008).
We addressed this challenge by drawing upon the best available guidance worldwide to identify the key features of recovery orientated services. The resulting framework was developed from a qualitative analysis of 30 international documents, including recovery indicators, practice guidelines, competencies and standards (Le Boutillier et al. 2011). The documents included in the analysis were diverse, from different countries (United States of America. England, Scotland, Republic of Ireland, Denmark and New Zealand), and varying in the method used to create the guidance and the level of service user involvement. Four over-arching categories of recovery orientated practice were identified: Promoting citizenship, Organizational commitment, Supporting personally defined recovery, and Working relationships. Within each category a number of themes described the elements of a recovery-orientated service. For example, within Promoting citizenship, themes such as “seeing beyond the service user”, “social inclusion”, “meaningful occupation” and “service user rights” were included.
Challenge 3: How do you develop a manual for supporting recovery?
Having operationalised the term recovery, and identified the key components of a recovery orientated service, we needed to combine these findings to produce a manual. The manual was for staff to follow in their day-to-day practice. However, as the above sources relied heavily on the published literature, we wanted to ensure that any intervention would meet the needs of both the individuals who use services and the staff implementing the intervention. Furthermore, as individuals with lived experience are the heart of recovery, we needed to ensure that the manual accurately represented the views of service users. To do this, we conducted focus groups with staff and service users, which focused on what individuals wanted from a recovery orientated service and how you might go about implementing it.
In total we ran 8 service user focus groups with 54 individuals across three different NHS trusts. The findings of the focus groups echoed what was reported in the literature, both with regards to the key features of a recovery orientated service and the key elements of personal recovery. In particular, despite the wide range of meanings, people talked about the importance of hope, having choices, feeling empowered as well has having the right support from professionals. Recovery-orientated services were described in terms of the relationships with individual staff members. It was clear that any intervention to support recovery would need to focus not only on describing the intervention but also the way it was delivered. We termed these different elements the process and content of the intervention.
The process of the intervention included an emphasis on the relationships between staff and people using services. The content of interaction between staff and service users placed an emphasis on how services should support people with their individual recovery journeys. The findings from both the reviews and the focus groups identified what should go in the manual, which has now been published (Bird et al. 2011) and is free to download.
Part 1 describes recovery-promoting relationships:
- Training and reflection opportunities will be offered to teams to allow them to understand what personal recovery means in their context, to consider their own values and how these can support recovery, and to develop and practice the use of coaching skills.
- People who use services can be active agents in shaping the content of clinical interactions. Service users will be supported to develop expectations that their values, strengths and goal-striving will be prioritised.
- Partnership relationships recognise the professional expertise of staff and the expertise from lived experience of service users. Teams will undertake a project to develop and practise partnership working, e.g. through staff and service users doing or learning something jointly.
Part 2 describes three specific pro-recovery working practices:
- Understanding the service user’s values and treatment preferences underpin an individualised approach to care planning. Workers will be trained in understanding values.
- Amplifying a service users’ strengths and ability to acccess community supports is an important approach to supporting recovery. Workers will be trained in assessing strengths.
- Supporting goal-striving by identifying personally valued goals, developing intermediate steps, and striving towards these goals. Workers will be trained to use existing care planning skills to support goal-striving.
Challenge 4: How do you measure recovery?
Having figured out a way to define recovery and designed an intervention for use within the NHS, which kept the individual nature of recovery at its heart, the final hurdle to overcome was how would we measure change?
Our first solution to this problem was to identify the available recovery measures to assess whether any were fit for purpose. As with defining recovery, a systematic review was conducted (Williams et al. in press). The review highlighted that although there were a number of measures; none were at present, suitable for the REFOCUS intervention as they failed to evaluate all of the areas covered in the CHIME framework described above. We are therefore developing and testing a new measure called INSPIRE, which is rated by individuals who use services. The items in INSPIRE were developed by two researchers (one with lived experiences) using the CHIME framework to identify the components of recovery which can be important to individuals. Like the intervention manual it covers Support (“what staff do”) and Relationships (“how staff do it”). INSPIRE can be downloaded here.
Where are we now?
The REFOCUS project runs from 2009 until 2014. The intervention manual is being used by staff from 30 community teams in 2gether NHS Foundation Trust in Gloucester and South London and Maudsley NHS Foundation Trust. Over 300 service users and 350 members of staff will take part. Our goal is that this research will lead to a recovery orientation being the reality in NHS mental health services. For more information about REFOCUS please visit our website.
- Anthony, W. (1993) Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal. 16: 11-23
- Bird, V., Leamy, M., Le Boutillier, C., Williams, J., & Slade, M. (2011) REFOCUS: promoting recovery in community mental health services. London: Rethink.
- Le Boutillier, C., Leamy, M., Bird, V.J., Davidson, L., Williams, J. & Slade, M. (2011) What does recovery mean in practice? A qualitative analysis of intervention recovery-oriented practice guidance. Psychiatric Services, 62: 1470-1476
- Leamy, M., Bird, V.J., Le Boutillier, C., Williams, J. & Slade, M. (2011) A conceptual framework for personal recovery in mental health: systematic review and narrative synthesis. British Journal of Psychiatry, 199:445-452
- Meehan, T.J., King, R.J. Beavis, P.H. & Robinson, J.D. (2008) Recovery-based practice: do we know what we mean or mean what we know? Australian and New Zealand Journal of Psychiatry, 42: 177-182
- Slade, M., Bird, V., Le Boutillier, C., Williams, J., McCrone, P. & Leamy, M. (2011) REFOCUS Trial: protocol for a cluster randomised controlled trial of a pro-recovery intervention within community based mental health teams. BMC Psychiatry,11: 185
- Williams, J., Leamy, M., Bird, V., Harding, C., Larsen, J., Le Boutillier, C., Oades, L. & Slade, M. (in press) Measures of the recovery orientation of mental health services: systematic review. Social Psychiatry and Psychiatric Epideimology.