Phase 1
A total of 200 questionnaires were distributed to nurses, physicians, and health and social care professionals throughout the study site. 121 questionnaires were returned yielding a response rate of 61%.
Table 1 presents a profile of respondents’ roles with the majority holding nursing roles; however, a comprehensive interdisciplinary profile is presented. Similarly, eleven discrete clinical areas are represented indicating broad participation in the survey. Most respondents had over eleven years of clinical experience; only a minority (14%) had less than five years of clinical experience in their role (Table 2).
Table 1
Profile of current role and location
|
Frequency (n = 121)
|
Percentage
|
Role
|
|
|
Staff Nurse
|
64
|
52.9
|
Clinical Nurse Manager (1 or 2)
|
14
|
11.6
|
Clinical Nurse Specialist
|
13
|
10.7
|
Senior Nursing Manager (CNM 111 or higher grade)
|
1
|
0.8
|
Physiotherapist
|
10
|
8.3
|
Doctor (Medical and Surgical)
|
6
|
5.0
|
Health and Social Care Professionals
(e.g. Dietician, Occupational Therapist, Psychologist, Speech and Language Therapist, Social Worker
|
3
|
2.5
|
Other (e.g. specific professional role in hospital identified)
|
10
|
8.2
|
Total
|
121
|
100.0
|
Location
|
|
|
Acute Medical Assessment Unit
|
8
|
6.6
|
Acute Surgical
|
6
|
5.0
|
Coronary Care Unit
|
3
|
2.5
|
Day Ward
|
3
|
2.5
|
Emergency Department
|
4
|
3.3
|
Intensive Care Unit
|
7
|
5.8
|
Medical Ward
|
42
|
34.7
|
Obstetrics and Gynaecology
|
2
|
1.7
|
Out-patients Department
|
15
|
12.4
|
Short Stay Unit
|
4
|
3.3
|
Surgical Ward
|
1
|
.8
|
Other (specify)
|
26
|
21.5
|
Total
|
121
|
100.0
|
Table 2
Duration of clinical experience
Years
|
Frequency
|
Percentage
|
< 5 years
|
17
|
14.0
|
5 to 10 years
|
23
|
19.0
|
11 to 20 years
|
36
|
29.8
|
> 20 years
|
45
|
37.2
|
Total
|
121
|
100.0
|
The majority of respondents were aware that SPC CNS was employed in the hospital (99.2%; n = 120) and data identified that over fifty percent of respondents (53.7%; n = 66) had referred a patient to the SPC CNS in the past 12 months.
Data showed that the primary reason for referral was symptom management (61% n = 38) with a sizable minority selecting discharge planning (10%; n = 12) (Table 3). The data indicated that most referrals to the SPC CNS, across all categories were received from nurses with some referrals from other health and social care professional.
Table 3
Reason for advice sought from clinical nurse specialist ranked highest
Reason for advice
|
Frequency (N = 96)
|
Percentage *
|
Symptom Management
|
86
|
71.1
|
Communicating bad news
|
21
|
17.4
|
Bereavement support
|
14
|
11.6
|
Education of staff
|
19
|
15.7
|
Staff support
|
22
|
9.1
|
Discharge planning
|
55
|
45.4
|
Other
|
2
|
1.6
|
*respondents selected more than one response
Overall respondents held positive attitudes towards the SPC CNS role especially in relation to clinical care, education and patient advocacy (Table 4). While a majority (78%) indicated that audit and research were core activities of the role.
Table 4
Attitudes to Clinical Nurse Specialist role
|
Strongly agree %/n
|
Agree
%/n
|
Somewhat agree
%/n
|
Disagree
%/n
|
Strongly disagree %/n
|
The CNS in Palliative care has a very important clinical role (n = 121)
|
90.1 (109)
|
6.6(8)
|
1.7 (2)
|
0.0
|
1.7 (2)
|
The CNS in Palliative Care always plays an integral role in patient education (n = 121)
|
86.0 (104)
|
10.7 (13)
|
1.7 (2)
|
0.0
|
1.7 (2)
|
The CNS in Palliative Care always plays an integral role in staff training and education (n = 121)
|
68.6 (83)
|
20.7 (25)
|
6.6 (8)
|
1.7 (2)
|
2.5 (3)
|
The CNS in Palliative Care is a patient advocate (n = 121)
|
82.6 (100)
|
14.0 (17)
|
2.5 (3)
|
0.0
|
0.8 (1)
|
Audit and research are core activities of the role of CNS in palliative Care (n = 120)
|
40.5 (49)
|
38.0 (46)
|
14.9 (18)
|
4.1 (5)
|
1.7 (2)
|
Respondents were asked to rank the core competences for SPC CNS. Almost two thirds of respondents ranked clinical competency role as their central core competence (65.3%; n = 79). One fifth of respondents selected advocacy as their central core competency (20.7%; n = 25) (Table 5).
Table 5
Core Competence Ranked 1st by Professional Role
|
Clinical
%/n
|
Advocacy %/n
|
Consultation %/n
|
Education
%/n
|
Audit/Research %/n
|
Total
(n)
|
Dietician
|
50.0(1)
|
0
|
50.0(1)
|
0
|
0
|
2
|
Staff Nurse
|
62.5(40)
|
26.6(17)
|
7.8(5)
|
1.6(1)
|
1.6(1)
|
64
|
Clinical Nurse Manager I or II
|
64.3(9)
|
14.3(2)
|
14.3(2)
|
0
|
7.1(1)
|
14
|
Clinical Nurse Specialist
|
69.2(9)
|
7.7(1)
|
15.4(2)
|
7.7(1)
|
0
|
13
|
Senior Nurse Manager
(CNMIII; ADON; DON)
|
100.0(1)
|
0
|
0
|
0
|
0
|
1
|
Medicine – Physician
|
33.3(1)
|
33.3(1)
|
33.3(1)
|
0
|
0
|
3
|
Medicine – Surgeon
|
100.0 (3)
|
0
|
0
|
0
|
0
|
3
|
Physiotherapist
|
80.0(8)
|
10(1)
|
10(1)
|
0
|
0
|
10
|
Occupational Therapist
|
100(1)
|
0
|
0
|
0
|
0
|
1
|
Other
|
60.0(6)
|
30.0(3)
|
0
|
0
|
10(1)
|
10
|
Total
|
65.3(79)
|
20.7(25)
|
9.9(12)
|
1.7(2)
|
2.5(3)
|
121
|
Finally, one third of respondents identified they had education on palliative care provided by the SPC CNS in the past year (33.1%; n = 40). It is of note that few respondents had any collaboration with the SPC CNS concerning audit (5%; n = 6), research (2.5%; n = 3) or quality improvement (7.4%; n = 9).
Phase Two Findings
Findings from the qualitative data are presented under the themes and sub-themes that emerged. The main themes emerging were: The role of the specialist palliative care clinical nurse specialist (SPC CNS); Things being done well, and Competence (Fig. 1).
The role of the specialist palliative care clinical nurse specialist
Interview participants reflected on their understanding of the role of the specialist palliative care clinical nurse specialist (SPC CNS). A varied understanding of the role that the SPC CNS for some respondents. The role was described as educative and supportive, ‘about advocacy’ – for the patient and their family, a sense of continuity in care, and was a resource to support the care of patients with complex needs:
I believe the role is that of, a supportive one, I don’t see it as that of hands on care. But I see it very much as being very involved in the patient and family’s care and journey. But through information, through support, through support of the patient and family but support of other staff members, whether they be nursing, qualified nurses, whether they be health care assistants, whether they be junior doctors or indeed whether they be other consultants from other teams. (P5)
My understanding of the role is one of advocacy number one for the patients that we’re looking after. And also helping out with the family, the palliative care patient, their family and anybody special to them. (P6)
I would understand it is that they are knowledgeable experts in the speciality of palliative care and that their role as a clinical nurse specialist is to support generalist palliative care. By supporting, encouraging, doing education, carrying out audit to really support the best outcomes for the patients proceeding whether it would be general palliative care or specialist. (P7)
And … have a sort of liaising role with different adult services in the hospital. (P8)
While differences in focus on the role of the SPC CNS was evident, there was general agreement in the context of specific role components.
Symptom management
For interview participants, symptom management was a key area where the SPC CNS provided guidance and expert advice:
… from our perspective we would link in with the palliative services very much for symptom control … So very much you know working side by side with palliative care has really been an advantage to some of our clients. (P1)
Helping with symptom management, all aspects of their care including psychosocial, spiritual, physical etc. (P5)
Probably some of, as well kind of getting over whole barrier with patients so palliative care is not just end of life, that the patient is going to die next week whereas you know we have lots of patients that have been seen for a couple of years at this stage but you know sometimes you know we need 2 different sets of eyes looking at the same patient to try and, you know. (P4)
Education
A key aspect of the role of a clinical nurse specialist is the provision of education to both patients and fellow clinicians about a particular condition and how best to manage it. Clinical Nurse Specialists can draw on their expert knowledge and clinical experience to provide this education. Education played an important and central role for the SPC CNS, with participants seeing this role as the most important in the context of support:
I suppose education is paramount, assisting them to assist the patient so giving them the tools they need to look after the patient in the absence of the team. The tools then need to I suppose identify symptoms and how to treat them effectively … So there’s a huge emphasis or there should be a huge emphasis on education. (P5)
By supporting, encouraging, doing education … to really support the best outcomes for the patients proceeding whether it would be general palliative care or specialist. (P6)
… should have a teaching role, … should have an educational role. (P7)
While education was seen to be important there was concern that current provision of education sessions was ad-hoc and needed to be provided in a more formal and structured way:
I suppose the feeling would be from my personal perspective is that education is at present very ad hoc and at the bed side and in the treatment room or whatever rather than formal education which I feel is, can only help the patient in the longer run, you know. So I feel that you know the role could have a much more active role in teaching and formal education of staff, both medical, nursing and multidisciplinary with regards to symptom management especially of the patients within that cohort. (P5)
Staff, patient and family support
The supportive role of the SPC CNS in supporting staff, particularly in the context of the many issues that arise when managing patients with complex needs and patients at end-of-life emerged.
… the support that they give the staff and also the family and maybe opening up that conversation and supporting them in that conversation. (P1)
… support to ward staff with regards to the care of patients as they come towards end of life. (P2)
I think there is a you know there is two ways there like there the staff need that support from the CNS but the CNS also need to be collaboratively working with all the other specialist disciplines. (P3)
A key component of this support focussed on discharge planning particularly when arranging a rapid discharge, to facilitate a person’s wish to die at home.
… dealing with maybe planning discharge home and support in the community and all that sort of thing. (P1)
I know previously … you know you would dread the thought of a palliative patient going home because it was such a complex discharge (P3).
Provision of education to support and enhance the knowledge base of colleagues caring individual’s and their family in the general setting was articulated as necessary:
I suppose education is huge and education maybe for our medics, I think nurses buy in very much, you know and because it is a nurse that is in the role, we listen to our colleagues I suppose. (P1)
… the nurses have to have a passion regarding education and I suppose sharing of knowledge and expertise that they have as a team. (P6)
You know that sharing of that knowledge I think the education is working well they are very good at delivering education some more than other. (P7)
Things being done well
There was some agreement among interview participants that the SPC CNS service has been a welcome addition to the hospital. The role of SPC CNS was viewed as an important in the context of the multidisciplinary team, the provision of person-centred care and strongly advocating for the patient and their family:
I think you know that MDT approach that they have is working well. (P5)
I think they deliver good person centric care that is very much … officiated by both the people they connect with the patients and their families and also the other services. (P6)
… you know they will advocate for the needs or the you know the complexity that is going on with the family and what might be required or needed for them… it’s safe to say its interacting with the patient and their families, works extremely well. (P6)
Although there were some positives, particularly the permanent presence of a SPC CNS service,; however, dissenting views are noted:
I would say is that there is a permanent presence, that’s the first thing. But beyond that I would struggle to say what else is positive (P5).
Changes needed
Participants were asked to consider what if any changes they might consider making to the current service to make improvements or assist the ongoing development.
For some it was structural changes that were articulated including the provision of a dedicated workspace for the SPC CNS service. Other considerations included the inclusion of dedicated palliative care beds for admission and management of patient care:
… a room, a base. With a phone. (P1)
… maybe a gap here is that at the moment there are no palliative care beds as such so you know for those very difficult patients that maybe need a little bit more input. (P2)
A need for greater clarity on the SPC CNS service role and the expectations of the service provided was articulated by a number of respondents:
I think there’s real confusion and lack of clarity about role expectation. I don’t think that’s anybody’s fault. I think there’s a clear vision but the understanding is lacking … There is a … disconnect in how the clinical nurse specialist, nurse managers and the consultant see the service. And indeed it’s also very different to what other clinical nurse specialists might believe. So I think where change is needed is an agreed vision of some sort for that role. (P5)
I suppose the roles of the nurse…has never been clearly defined within the setting in which SPC CNS role is. So from the get go ... it has been massively clinical and I even dare to say massively medical in its approach. (P6)
What is evident is that an understanding of the role of the SPC CNS is lacking:
I believe as well that … consultant colleagues whilst they value and I know that they value the work of [the SPC CNS service] ... I’m not convinced they completely understand the role of the clinical nurse specialist. (P5)
So it’s very much led by a consultant and I suppose the role of the CNS within that team is much less of an autonomous role than any other CNS within the hospital. Most of the CNSs within the hospital and that would be the case throughout the country work autonomously within the speciality in which, they speak to and they consult with different members of the medical team, not specifically one. (P6)
But I think there needs to be what is the word not be handmaidens as much as more autonomous practitioners. (P7)
… we now have great opportunity to be experts into really go out there and do the best you can as a really experienced nurse for patients. And yet we seem to dilute this autonomy all the time. (P7)
Competence
Core competencies for the Clinical Nurse Specialist roles are defined by the NCNM [6] clinical, advocacy, consultation, education, audit and research and participants were asked to consider the competencies and rate them as either of most or least important.
Most important
Although responses varied, in general the clinical role of the SPC CNS was of significant importance, and that of an advocacy role:
And I think it’s interesting that you say clinical and advocacy and they are closely linked but you know you’re very experienced, palliative care nurse is but sometimes you know if you do see a disjoint between them, you can see that they’re needed together but not everyone has the expertise that people like you have, do you know what I’m saying in both being clinical. (P1)
I would say probably clinically, for the patient to know how the patient is, how the family is coping and I know, I mean the research and audit has to be done but at the end of the day the consultant is driving the service, like regards to what the latest research is unless the consultant is up with it and doing it, there’s not much point in me saying well this is the latest. (P3)
I suppose the advocacy. (P4)
Some participants identified that all competencies were of equal importance to the role and service:
Like the clinical the advocacy piece the education piece I can't remember is it audit and research and their consultant role I see them all as equally important but I don’t see the role as you know I worry that the role doesn’t have that autonomy that it should have. (P7)
Least important
The vast majority of participants indicated that audit and research were of least importance to the role of the SPC CNS. However, variance in opinions were voiced. Research was viewed as a consultant led activity, and the SPC CNS role was considered to advance research:
I mean the research and audit has to be done but at the end of the day the consultant is driving the service, like regards to what the latest research is unless the consultant is up with it and doing it, there’s not much point in me saying well this is the latest. (P3)
Audit and research were perceived as paper work and there was no time:
I suppose auditing, you know what I mean … so much time on the ward, with the patients and all that, to have to do stuff like paper work and audit is taking [you] away from all of that. So I know it’s important and I do recognise the importance of the auditing but … god you know I’m sure [you’d] be here all hours trying to fit that part in, you know the paperwork part of it. (P3)
I don’t think there’s a least important one. I really done. And I think therein lies a problem. Because I think if, look clinical nurse specialist, the very name of it means that we are of course clinically embedded to a point. And I get that. But I don’t think it’s as important as, if there’s not an interest or engagement in audit, research, education, you know how can you be that clinical specialist. So I don’t think there’s a least important one. (P5)
Finally, a varying view of competence saw it as primarily focussed on physical symptom management, with some focus on psychological care, but a total neglect of spiritual care:
You see all this competencies, in my opinion, in practice they melt down to physical symptom management. And there is maybe a little bit of psychological merit. But the spirit dimension is completely neglected.
Going further this participant tended to see each of the core competencies in isolation:
I think, to be honest, the difficulty … to deliver in all these competencies. And the result is that … doesn’t deliver in any of the competencies, in a consistent way. If you put too much demand, you only can frustrate the person who does it. And the people who get the service. (P8)