Specialist Nurses’ Perceptions of the Barriers and Facilitators to Inviting Patients to Participate in Clinical Research
I designed this research study to find out more about the views of clinical nurse specialists who support clinical research study recruitment by inviting patients to take part in studies. I wanted to find out what they thought were barriers and facilitators to inviting patients when they saw them during their normal care. The aim of this was to find ways in which research nurses and study teams could help specialist nurses, and possibly other clinical staff, to invite more patients to studies.
I interviewed 12 clinical nurse specialists about their experiences and perceptions, and after analysing the interview data I found five main themes of barriers and facilitators:
Understanding the study It was very important for specialist nurses to feel they had sufficient understanding of any study to which they were inviting patients. Achieving this understanding often resulted from specialist nurses and research teams engaging and communicating effectively with each other – before, during and after the study recruitment period. Barriers often arose from the research team not providing sufficient or appropriate information, and being unavailable or unapproachable. Lack of time and lack of research experience could also make understanding studies more challenging for specialist nurses.
The invitation process Specialist nurses wanted the process of inviting a patient to a study to be simple and convenient, and tools such as simple laminated crib sheets could be very helpful. However, it appeared to be a significant barrier when the specialist nurse felt they were unable to give the patient a reasonable amount of information about the study when delivering the invitation. Many felt it unsatisfactory to simply hand out information on behalf of research teams, and were willing to spend time with patients explaining studies.
Teamwork Feeling part of a team with research nurses and the research team was very important to creating a sense of ownership of studies, and increasing motivation. Facilitators to this included research teams having an active presence in the clinical area, and maintaining effective communication with specialist nurses. Conversely, research teams being perceived as remote, unapproachable, and unprofessional or ‘not playing their part’ could be significant barriers. Teamwork within the clinical team was also important, with several participants mentioning that when their whole team had a unified approach to inviting patients and were all ‘on board’, they were more likely to remember and be motivated to invite patients.
Valuing research All of the participants personally held positive views of research, and felt this facilitated them inviting patients. Several mentioned that it had been extremely helpful to have experienced the full cycle of research, that they so could clearly relate how inviting a patient to a study resulted to subsequent improvements to clinical practice. If research teams did not help them see this link, for example by not feeding back study results or progress, this could be a barrier. The culture of their clinical teams, Trusts and specialties were also influential. For example, it was a facilitator to inviting patients if this activity was normalised and valued in their clinical area.
Assessing patient suitability The specialist nurses had a variety of concerns about potential negative impacts on patients from being invited to take part in studies, for example that they may feel stressed, scared or distressed. However, while for some this was a barrier to inviting patients, others felt differently. Some specialist nurses emphasised benefits to patients from being invited to participate, such as feeling included. Some described how they would still invite patients if they had concerns, because they felt comfortable and confident to approach the patient in such a way that they could minimise negative emotions. Having a pre-existing supportive relationship with the patient in their capacity as specialist nurses helped them to do this, as did advanced communication skills and extensive clinical experience. Another interesting finding was that some of the specialist nurses felt strongly that they should not make decisions on the patient’s behalf, and so they should invite all eligible patients and support them to make an informed choice. It seemed that this attitude stemmed from personal values and the culture of their clinical team and clinical specialty.
As a whole, the findings showed that the barriers and facilitators were nearly always complex and interdependent. Although this suggests it might not be straightforward to address barriers, it also suggests that positive changes could bring further positive effects. For example, by spending time with specialist nurses to ensure they fully understand studies, research nurses may also create a greater sense of teamwork and promote the value of research.
These findings prompted me to reflect on many aspects of my practice as a research nurse, and I found that several things differed from my expectations. For example, I had always assumed that time was a significant barrier to inviting patients when delivering clinical care, and had tried to make things easier for specialist nurses by asking them to just mention studies to patients and then refer them to me. I would now always ask specialist nurses how much information they feel they should give patients when inviting them, and work with them to achieve this, rather making my own assumptions.
Of course, it is important to remember that the barriers and facilitators I identified in this study are by no means the only ones, and they may not all be applicable to all clinical nurse specialists. A limitation of this study was that all of the specialist nurses I interviewed were positive about research and about inviting patients, and therefore the findings do not reflect perceptions of those who might have more negative or ambivalent views. Probably the best way to use these findings, as with all qualitative research, is to use them as a basis to reflect on practice and stimulate discussions with colleagues. Are there any barriers or facilitators that you find surprising, and which you could find out if could be relevant to clinical staff you work with?
As a final couple of points, I would encourage any research nurse thinking about doing their own research to go for it, as it is really rewarding to plan and carry out your own study. Having a sudden realisation that I actually had my own data was a particularly exciting moment! I would also recommend looking at research evidence to inform any aspect of your practice as a research nurse, as I was surprised at how many studies have been done around topics like consent and recruitment. I think it’s really important we do our research nurse ‘work’ in an evidence-informed way, so that we know our contributions to research studies are the best they can be.
Caroline qualified as an adult nurse in 2007 and spent the first three years of her career in clinical nursing roles, firstly on a stroke ward and then in neuro intensive care. She moved into a stroke research nurse post in 2010 and stayed in research ever since. Her research nurse experience spans several clinical specialities including stroke, haematology, diabetes and cardiovascular disease. Caroline has recently completed her MRes and is currently undertaking a full-time PhD at the Blizard Institute at QMUL← What gives us job satisfaction working in clinical research? R.E.S.P.E.C.T. for the Site Master File for Clinical Research →