From patients to participants – on becoming a research nurse

Research Nurse, Alison Wilson Kay, introduces her role in the EMPOWER project and reflects on moving from a clinical role into a research role.

I’m a registered mental health nurse and my background prior to the EMPOWER study was mainly in inpatient settings, working in perinatal and child & adolescent services. The EMPOWER team is based at Glasgow University’s Mental Health Research Facility, and working in an office-based job now as opposed to a hospital environment obviously feels different; no uniform, no alarm, no jangling keys.

I now have contact with participants rather than patients: I might speak on the phone with people using the EMPOWER App, or perhaps see others in their own homes. Previously I would spend up to 12 hours a day/night working with only 6 hospital inpatients and their families/carers. Moving into research has been quite a daunting change In terms of the shift required in my own nursing practice, and I know that in the course of the EMPOWER study I will learn a lot about how to build and manage meaningful relationships with people who have different needs and expectations to those I’ve worked with in more clinical environments

I now have contact with participants rather than patients

As a nurse (and fellow human) I can advise, support, encourage and empathise with people experiencing mental health difficulties; less straightforward is how to do this in a meaningful way, as someone who lacks any personal experience of actually living with or managing those difficulties myself. I’m not the first and I don’t think I’ll be the last clinician working in mental health to have felt hesitant or apprehensive around dispensing advice (or medication). Study and training gives you the qualifications and expertise to do this to the best of your ability… and yet. To turn a pejorative diagnostic term on myself, despite the all the training and my best intentions, it’s difficult to deny a certain lack of insight.

Alongside clinical psychologists and other research professionals, my new colleagues include peer support workers (PSWs) Davie and Jayne, who have previously contributed to the EMPOWER blog. PSWs meet with participants to set up the EMPOWER app, and stay in touch via text or telephone calls to offer continued support throughout the study. This is the first time I’ve worked closely with PSWs and so far it’s been a great learning opportunity for me.  In a short space of time, Davie and Jayne have introduced me to the peer values that inform their approach, and how interventions like Wellness Recovery Action Planning work in practice. Taking the lead from colleagues who have expertise in living with mental health difficulties has allowed me to develop, not insight exactly, but definitely more awareness and sensitivity in my practice, increasing my confidence in the process. As the evidence base for the power of peer relationships continues to grow, in digital interventions and more widely, it’s exciting to have the opportunity to work on a project that is so invested in developing this approach.

ebb and flow

People can monitor ebb and flow using EMPOWER

As well as providing access to peer support, using the EMPOWER App allows participants in the study to keep a record of the ebb and flow that occurs for everyone in daily life. For people who have experienced psychosis, research has shown that subtle changes in everyday experiences, perhaps sleep pattern, activity levels and/or relationships with family and friends, can suggest the possibility of relapse. EMPOWER users are able to record their own real-time data relating to similar factors, as well as other individualised items, based on their own past experiences of being unwell. If study participants choose to, they may share the data held on the App with their clinical team, meaning all those involved in providing support for staying well have a shared insight into the early warning signs of relapse.

As Steph, another member of the team has discussed on the blog, evaluating the implementation of the EMPOWER App in clinical practice is a key feature of the study. We’re extremely grateful to the Community Mental Health teams who are taking part here in Glasgow and in Melbourne, Australia for their engagement and support. Part of my job involves working with clinical teams to publicise the study and to help identify people who are eligible to take part. From there it’s really important to maintain strong working relationships, for the success of this trial and others that may come about in the future.