Interviewee

Janelle Yorke, Lecturer, School of Nursing, Faculty of Health and Social Care, University of Salford, Manchester, UK

Article

Yorke, J., Cameron-Traub, E. (2008) Patients' perceived care needs whilst waiting for a heart or lung transplant, Journal Of Clinical Nursing, 17(5A): 78-87

Summary

Waiting for a suitable organ transplant is a long, unpredictable, isolating and stressful experience. Although there is hope, there is also a great deal of uncertainty. To discuss her study on how nurses can support patients through the transplant period, Janelle Yorke spoke to Michael Bouwman. Communication by the nurses was found to be most important, including information and regular contact. Noted was that patients wanted nurses to know them and their needs, and tailor information to their needs: to cut through the medical "mumbo jumbo". Familiarity, positive thinking and compassion were also found to be an overwhelming need of patients. Medical staff need to develop a means of providing frequent, informed, appropriate and compassionate communication with patients awaiting transplant, either through transplant support groups or through innovative information technology usage, including the telephone, Skype or the internet.

Transcript

Michael Bouwman: I’m Michael Bouwman and today I’m introducing Janelle Yorke, Lecturer, School of Nursing, Faculty of Health and Social Care, University of Salford, Greater Manchester, UK. I’m speaking with Janelle about her study and article: Patients perceived care needs while waiting for a heart or lung transplant, co-authored with Elizabeth Cameron-Traub and published in the Journal of Clinical Nursing. Welcome, would you like to set the stage to our listeners about the illness and emotional stresses associated with the waiting period for heart and lung transplants.

Janelle Yorke: Our research is concerned with people who have a chronic cardiac or respiratory disease and are also waiting for a heart or lung transplant. Now there are many different diseases that fall within this, but, mainly they include cardiomyopathy, cystic fibrosis and emphysema. But essentially the transplant trajectory is similar for all diseases. Patients living with these chronic diseases invariably experience acute exacerbations of their illness and this often involves an increase of their symptoms such as, shortness of breath, pain and fatigue. Now because they are on a transplant waiting list, these acute episodes are generally treated quite intensively. Often requiring hospitalisation and this is order to maintain the identity of the person waiting on the transplant waiting list. So as you can imagine these are very stressful times for the patient and their family, especially if the person is removed, which often happens, from the transplant waiting list, during these times, as a medical instability. Unfortunately, patients do endure a long and very unpredictable wait for a suitable organ transplant, as the demand for organs outweighs the supply. Though whilst waiting for a transplant offers many people hope, it’s also a time laden with uncertainties and emotional stresses. And many patients describe the waiting period as an emotional rollercoaster, especially when false alarms occur, and this is when somebody will be called in for a transplant, but for some reason the procedure does not go ahead, and these, in particular, are very distressing times. How nurses can best support patients through the pre-transplant period is something that we really wanted to explore further, and that’s really the overarching theme of our program’s research.

Michael Bouwman: Of course, and would you outline the broad aims of your research and explain the specific focus of this paper on nursing care?

Janelle Yorke: Our overall aim was to gain a greater understanding of patients’ experiences whilst waiting for a heart or lung transplant. We really wanted to gain a greater insight into the hopes and fears of people and the challenge that they faced. Now this paper focuses specifically on how patients perceived the care delivered by transplant nurses, so what helps and what could be further developed by us. The literature does suggest that there is often a discrepancy between what patients perceive and what nurses perceive as constituting optimal care. But this paper really highlights what patients feel their care needs are and how we as nurses can best meet these needs. Communication really, with the nurses in general, was the overarching theme; in particular, the need for information and regular contact did resonant throughout the interviews. The patients’ informational needs related not only the pre-transplant period, but also post-transplant life. There were some that really didn’t want to engage too much in discussion about life after transplant. But we are, however, required to discuss these challenges that will be faced after transplant, such as the strict medication regime that they will need to adhere to, and the associated risk of complications, such as, cancer. So what the patients’ were really saying to us was that they relied on the nurses to know them and to tailor this information to what their particular needs were, at any particular time. So obviously patients can be extremely overwhelmed with the content and the amount of information that needs to be related and during the wait for a transplant. And so they really did seem to rely on the nurses to keep them updated with, for example, what tests needed to be done and where and why. The nurses were often seen as being, not only the informants, but also the person who could simplify the information that they were receiving, or as one patient put it, “to simplify the medical mumbo-jumbo,” and I think that’s something that nurses do inherently anyway. But linked with this theme of information was the need for regular contact with the transplant nurses, because patients viewed being on the transplant list as their lifeline, regular contact with the transplant team, including the nurses, was seen as being very important. The nurses appeared to maintain this lifeline with regular contact, either face to face or via the telephone. And some patients would initiate this contact themselves and would utilise the twenty-four hour contact policy that we have if they needed too. But there were some patients who relied totally on the nurses to contact them and wanted this to be on a regular basis, even if this was just to say, you know, “Hi, we’re still thinking of you, we haven’t forgotten you.” But this was more of an issue for patients that did not live close to the transplant unit and they weren’t able to attend the gym and the regular support group, and to have that regular face to face contact.

Michael Bouwman: And your work also documents the need for familiarity, positive thinking and compassion. Would you discuss these findings?

Janelle Yorke: Familiarity is closely linked to the previous scene that I’ve just discussed, that patients express this overwhelming need to know and be known by the transplant nurses, and again this was most pertinent to patients residing a fair distance from the transplant unit. So, familiarity really enhanced the patients feeling of belonging to one big family really. Not being forgotten is the message within this particular theme. For those who were able to attend the transplant support group, which runs fortnightly, this, provided a good avenue for patients to not only become familiar with transplant staff, but also with each other. And this obviously provided an opportunity for increased social and emotional support. Waiting for a transplant, as I previously said, can be an extremely isolating experience for some people, and for some people, participants in our study, they had relocated to the city to be closer to the transplant unit, and this obviously brings unique stresses of leaving family behind and being in a different strange environment when you’re probably at your most vulnerable. Positive thinking, I believe, is something that nurses are good at, and this goes hand in hand with displaying an appropriate sense of humour. And again, being familiar with our patients is key: so knowing when they’re feeling down and how best to respond to that. And this knowing and responding is an attribute of also displaying compassion and being compassionate. And this is especially true during episodes of medical instability, when a patient may very well be temporarily removed from the list, and this is obviously an extremely worrying time for the patient. But interestingly, for one young cystic fibrosis patient, her actual main concern was for the nurses’ clinical competency, and she needed to trust the nurses’ clinical competence before she could accept any emotional support that any individual nurse may try to provide for her.

Michael Bouwman: And lastly, Janelle, what do you think are the practical implications of your work?

Janelle Yorke: This paper is very practice orientated; it deals with patients’ perceptions of their nursing care needs and how these needs can be better met. Our research highlights positive impacts that nursing can have on the patient’s transplant journey, and I think that many of our recommendations can be extrapolated to nursing care of other chronic illnesses. The take home message from this particular paper is the need to develop a means of providing frequent, informed, appropriate and compassionate communication with patients who are waiting for an organ transplant. The practical use of information technology, whether this be as simple as picking up the telephone, on a regular basis, or using the internet, and email, may help patients to keep that lifeline open with their transplant needs. And I think, in particular, innovative ways of keeping in touch with patients, that live a long distance from the transplant unit, could include things such as, Skype, or other media forms during support group meetings, for example, so that patients that can’t come in to the unit, for whatever reason, can still be involved and receive that interaction, which our research has demonstrated, is so important.

Michael Bouwman: Well congratulations again on your work and thank you very much for talking with IPP-SHR podcasts today.

Janelle Yorke: Thank you.