Sian

Age at interview: 48

Brief Outline:

Sian has been a research nurse for seven years, and has worked mostly on primary care studies. Sian enjoys many aspects of her job, including the contact with patients and opportunities to mentor research nurses new to the role or starting in a new context.

Background:

Sian is a research nurse. She has four children. Her ethnic background is White Welsh.

More about me...

Sian has worked in nursing for 28 years, with the last seven years as a research nurse. Before coming to research, Sian was a district nurse, which she really enjoyed. She decided to move jobs as she “was ready for something new”. When a colleague mentioned research nursing, “it was like a lightbulb moment”. Initially, Sian started working in primary care research alongside her role as a district nurse.

Although she did not know what to expect when she began research nursing, Sian felt that this move was “a natural progression” as there were aspects of the role that were similar to her past experiences: “it was really lovely just to have that sort of transition over from the same place to the same place but doing something completely different with a whole new language”. Although she did not receive much initial training, Sian was able to shadow colleagues when beginning her role in research. Nonetheless, there were aspects that Sian found challenging, such as getting used to the terminology and acronyms used. However, Sian reflects on the fact that she has learnt new skills since being in research, from working with patients with mental health needs, to conducting electrocardiograms (ECGs). This is one thing Sian likes about her role: “all these things are new, innovative and fresh and keep me focused and enjoying my job”. 

Sian is a lead nurse on several studies, which she project manages. In her role, Sian visits patients in their homes but also carries out research in surgeries. When she contacts patients about research opportunities, she explains the study and goes through their concerns before taking consent. Sian also collects and inputs data, which could include answers to questionnaires or measurements of BMI and bone density. As well as communicating with patients, Sian liaises with other stakeholders such as sponsors and the staff in sites where she works. Maintaining high standards of care remains crucial to Sian: “the research is really, really important to me but my patient’s needs are first and foremost”. For example, if she discovers a medical problem, she signposts the participant to an appropriate service. Sian enjoys developing relationships with patients, particularly when they come back and participate in further studies: “that’s always really rewarding because you always think ‘well we must have done okay then’”.  

Sian feels that being able to “put the needs of the patient first” is an important characteristic for a research nurse, as are strong listening skills. Sian also mentions the need to communicate with different stakeholders and consider their expectations. She finds that having a manager who is a nurse has been really helpful, as this helps ensure that “research and nursing kind of fits snuggly together like a glove rather than it being friction”. Being employed by a Clinical Research Network means that Sian meets other research nurses at monthly meetings, where they can discuss different studies. Sian also goes to annual meetings where she can meet individuals from other fields. This is an experience Sian really values: “I love to network and meet new people, see if there’s something new I can learn from them”. Sian also mentors a research nurse who transitioned from working in secondary to primary care: “I really enjoy sort of bringing people in and teaching them about the role and then seeing them sort of go off and fly and do what they do”.

Sian finds that there can be challenges in her role. For example, patients’ language and literacy can be a barrier to recruiting to studies. Similarly, Sian has had to turn away an individual with learning difficulties due to issues around consent. Sian finds such situations “a little bit tough”, but emphasises the importance to adhering to the exclusion criteria. In the past, Sian found dealing with serious adverse events to be difficult. However, over time, she has learnt to respond to these situations with more confidence as she has gained experience in the field.

Sian predicts that in the future, research nursing will ‘adapt’ with the times, for example by using social media to recruit participants. She thinks research nurses will have to adapt their practices in line with these broader changes. Sian hopes that the future will also see more opportunities for ethnically diverse groups to be included in research: “I would love to see more studies like that to engage people from whatever their background is”.

Sian moved from district nursing to being a research nurse in primary care. She liked that she had familiarity with working in these types of settings, but found the terminology of research tricky at first.

No, I went in like a sort of completely open minded not knowing what I was going to do, where I was going to be, who I was going to be working with. What was really lovely was that I’d gone sort of from working within primary care in district nursing obviously to work primary care in research so it was home from home, I was used to the environment being with patients of the same elk and staff and that sort of thing so it was really lovely just to have that sort of transition over from the same place to the same place but doing something completely different with a whole new language, you know. So I can remember my first study and they were coming out with lots of acronyms and when I started nursing we sort of had lots of acronyms and I’d be like I don’t understand it and research was like start, like starting a new job like completely like starting nursing, you know, totally new language but, but great [laughs].

Some of the key tenets of Good Clinical Practice training for Sian were that research must be ethically-sound and not be forced on patients.

So Good Clinical Practice to me means that the way that we do research today isn’t like it used to be and we have learnt from the past such as the Nuremberg Trials and oh there’s another lady that Henrietta Lacks. So we’ve learned from that and the way to do research the best, that we’re not gonna put patients arms up their back and make them take part, but it’s a journey that we go on together and you know, if they went to take part they do, if they don’t that’s fine as well they’re well within their rights [Laughs]. And it is, it’s the whole of the study, the protocol, everything just coming together and making sure that you’re able to deliver that appropriately.

Sian said there wasn’t a lot of training about research when she started, but study-specific training was helpful.

Okay I think because it was six nearly seven years ago there wasn’t a great deal of training, so it tended to be that if it was in the clinic environment you went out with another nurse who had experience in research nursing and you watched her, another nurse, so you obviously you had your GCP [Good Clinical Practice] training and then you had your sort of in clinic training and then on some of the studies we had training from the study teams which was really valuable because I think it makes it less like a production line. If you’ve got the study team telling you why you’re doing the study, where it’s come from, where we’re going it makes far more sense than just kind of filling in the paper work because, you know, it’s about the whole picture isn’t it and that helps just to embody what we give to the patients.

Sian described a number of skills and experiences of working with different patient groups she had developed as a research nurse.

That’s quite funny really because I think when you first come into research people think that you’re going to lose your skills and actually there are probably skills that I use less but there are new skills that I’ve learned to do as a result of being in research nursing that I perhaps, that I wouldn’t have done had I still been in district nursing.

So simple things like I’d not done an ECG during district nursing, I’d never been in a position as a student nurse where I’d had to do an ECG and it is just something that’s really simple but one of my studies that I’ve worked on required it. I’d never worked with patients with severe mental health so I’ve learnt skills of talking to those patients and that, again that’s improving me as a nurse and giving something back to them as well.

We learnt how to do the spirometry and I’d never done that before and I’m sure there will be, you know, new things that we will learn. I’d never used the scales in the elderly study that I’m doing at the moment that measures your bone density, fat mass, muscle mass so all these things are new, innovative and fresh and, you know, keep me focused and enjoying my job.

Part of Sian’s role was guiding patients through the data collection tasks, including questionnaires.

So once they’ve consented then we’ll start working through what the study’s asking them to engage in, so whatever that be so we’d work through the CRF [Case Report Form] or the data capture record depending what study and what sort of terminology. And just work our way through that and just sort of reassuring the patient as we go along and enabling them time to ask questions as well that’s really important and checking that they’re still kind of with you on the journey and that they understand the what you’re doing and why you’re asking things. Because sometimes you will ask them questions and, as you know, some questionnaires kind of repeat themselves but in a different way and they don’t always understand well why is it like that and it’s just sort of explaining, well its asked in a different way because they want it form a different angle, so that they don’t get frustrated with it really because some of the studies can be quite lengthy. So, and then giving them breaks perhaps not always doing it in one visit, perhaps doing it over two or three even if you’ve got somebody who’s in their 90’s and they’re a little bit frail or not feeling so well today it’s just gauging it for them really and their needs, yeah.

Although she felt there were definite differences between working clinically in a non-research capacity, Sian liked that there are sometimes opportunities to help patients/participants in the course of research.

How else it compares, it’s different because you’re not giving, you’re not really giving, you’re not giving treatment, you know, you’re delivering what the study is asking you to do. But I am a nurse first, so if a patient presents with a problem if it’s something that they just happen to discuss with you because they like to talk to people they don’t know I can signpost them to the right place. Sometimes throughout the process of actually completing the CRF [Case Report Form] you’ll find a high blood pressure or a very fast pulse and I think that’s great because it means that you’re able to pick up that, take it back to the GP and the patient is gaining in their care experience by having that. So I, I actually find that bit quite exciting because I know that research shows that if you take part in research even if you’d had nothing done to you as such you, your care improves, your likelihood improves so I think that’s really fantastic, you know, by having nothing done to you, yeah it improves so that’s great.

So that’s quite rewarding for me as well that I can be doing the research and then sort of have other issues sign post them off and think well even though I’m not in my kind of nurse caring capacity doing, delivering care I’m still looking after the whole person so it’s still holistic, yeah.

Sian was a research nurse in primary care. Generally, each surgery arranged a space for her when she was due to visit and she otherwise tried to minimise any disruption.

Yeah, yeah so obviously very similar to secondary care. It’s a multi-disciplinary team and you’ve got all sorts of people going in and it, again it’s respect, it’s respect for their space and not, not impinging on their space either. So I think what’s really important to me in, when I’m working in general practice is that I go in I find out what I need to know what my EMIS logins are, I make sure I’ve got all my equipment in my room and then I try not to bother them for the rest of the day. I mean obviously they’re there if needs be but I think the less that I impact on their time as much as I possibly can do, the better for them because obviously they’ve got their job to do as well. And I think again a little bit like when I said about the patients and them coming back again, you know, the better my relationship is with the surgery and the less that I impinge on their working day, the more likelihood is that they’re gonna have us in again and again it’s all about building relationships and communicating with people.