The study included 80 HPs, accounting for 59.45% of the total staff of the 3 departments considered. Of these, 19 were physicians (Ph), 47 nurses (N) or technicians (T), and 14 other professional figures, such as nurse assistants and biologists. Of these, 33 participated in the pre-training FG and 29 in the post-training FG. Besides, we collected 77 pre-training and 77 post-training questionnaires as the same participants who filled both the questionnaires. We synthesized the training participants’ characteristics and their participation in the training course in Table 1.
Table 1. Training participants' characteristics
Hospital ward
|
HPs
|
N
|
No. of participants
|
%
|
Nephrology Service and Dialysis
|
Physician
|
11
|
8
|
72.72%
|
Nurse
|
50
|
18
|
36.00%
|
Head Nurse
|
2
|
2
|
100%
|
Nurse Assistant
|
6
|
6
|
100%
|
Biologist
|
1
|
1
|
100%
|
Total
|
70
|
35
|
50%
|
Geriatric Medicine
|
Physician
|
9
|
4
|
44.44%
|
Nurses
|
16
|
12
|
75.00%
|
Head Nurse
|
1
|
1
|
100%
|
Nurse Assistant
|
15
|
4
|
35.71%
|
Total
|
40
|
22
|
55.00%
|
Radiotherapy Service
|
Physician
|
8
|
7
|
87.50%
|
Radiology Technician
|
16
|
7
|
43.75%
|
Nurse
|
6
|
6
|
100%
|
Head Nurse
|
2
|
1
|
50.00%
|
Biologist
|
1
|
1
|
100%
|
Nurse Assistant
|
2
|
1
|
50.00%
|
Administrative Staff
|
2
|
/
|
/
|
|
Total
|
37
|
23
|
59.45%
|
Grand total
|
147
|
80
|
54.42%
|
Quantitative results
The open-ended questionnaire (before and after the intervention) gathered 77 different responses. Table 2 illustrates percentages, before and after, with confidence intervals and the outcome of the McNemar test [26] and the p-values for each domain.
Table 2. Distribution of WHO domains before and after training
Domain
|
WHO palliative care definition
|
Before
Percentage with confidence interval
|
After
Percentage with confidence interval
|
P
p-value
|
D01
|
Improvement of patient quality of life
|
23.4 (14.5-34.4)
|
61.0 (49.2-72.0)
|
< 0.001
|
D02
|
Life-threatening illness
|
53.2 (41.5-64.7)
|
64.9 (53.2-75.5)
|
0.052
|
D03
|
Prevention and relief of suffering
|
32.5 (22.2-44.1)
|
28.6 (18.8-40.0)
|
0.689
|
D04
|
Treatment of pain
|
33.8 (23.4-45.4)
|
39.0 (28.0-50.8)
|
0.571
|
D05
|
Treatment of physical symptoms
|
22.1 (13.4-33.0)
|
40.3 (29.2-52.1)
|
0.001
|
D06
|
Psychological aspects of patient care
|
18.2 (10.3-28.6)
|
44.2 (32.8-55.9)
|
< 0.001
|
D07
|
Spiritual aspects of patient care
|
02.6 (00.3-09.1)
|
20.8 (12.4-31.5)
|
< 0.001
|
D08
|
Addressing patient and family needs
|
23.4 (14.5-34.4)
|
53.2 (41.5-64.7)
|
< 0.001
|
D09
|
Encouraging patients to live as actively as possible
|
01.3 (00.0-07.0)
|
09.1 (03.7-17.8)
|
0.077
|
D10
|
Helping family to cope during patient illness
|
10.4 (04.6-19.4)
|
23.4 (14.5-34.4)
|
0.016
|
D11
|
Helping family to cope with their bereavement
|
01.3 (00.0-07.0)
|
07.8 (02.9-16.2)
|
0.131
|
D12
|
Team approach in addressing needs
|
07.8 (02.9-16.2)
|
23.4 (14.5-34.4)
|
0.006
|
D13
|
Investigations aimed at improving management of clinical problems
|
00.0 (00.0-04.7)
|
00.0 (00.0-04.7)
|
/
|
D14
|
Early applicability in illness trajectory
|
03.9 (00.8-11.0)
|
23.4 (14.5-34.4)
|
< 0.001
|
D15
|
Affirming life
|
00.0 (00.0-04.7)
|
02.6 (00.3-09.1)
|
0.480
|
All 16 domains had entries among participants’ answers except for D13. The most significant difference was observed for domain D01 "Improvement of patient QoL", which evidenced a statistically significant difference (p-value= <0.001) between pre- and post-training, with an approximately three-fold increase.
Two other domains also showed significant enrichment with training: D14 "Early applicability in illness path" (p-value= <0.001) and D08 "Addressing patient and family needs" (p-value= <0.001).
The domains that concern addressing the patient's holistic conception and taking charge of all its dimensions (D06 "Psychosocial aspects of patient care" and D07 "Spiritual aspects of patient care") had significantly higher representation after the training intervention (p-value= <0.001). These results also confirm that these domains had been properly learned during the course. These domains were followed in representation by D05 "Treatment of physical symptoms" (D05) (p-value= 0.001), which doubled after training; D12 "Team approach in addressing needs" (p-value= 0.006); and D10, referring to extending care to patients' families, "Helping family to cope with their bereavement" (p-value= 0.016).
Finally, the D02 domain "Address the problems associated with incurable diseases", with p-value= 0.052, and D09 "Encouraging patients to live as actively as possible", had borderline statistical significance p-value= 0.077.
The significant differences between pre- and post-intervention were suggestive of changes in the understanding of the topics, increased awareness or acquisition of new notions.
Qualitative findings
The analysis of the FGs before and after training led us to identify five overarching themes (Table 3): (1) Relationships among I- and II-levels, (2) Communication with patients and their families, (3) Clinicians’ competences in EoL care, (4) Integration among I- and II-levels, and (5) Self consideration of their emotions. These themes emerged with different meanings (defined within the sub-themes) in relation to pre-training and post-training data collection. We highlighted this meaning shift in Table 3.
Table 3. Meaning shifts among FGs from before training to after training
THEMES
|
Sub-themes emerging from FGs before the training
|
← meaning shift →
|
Sub-themes emerging from FGs after the training
|
‘Disagreement’
|
1. Relationships between I- and II-levels
|
‘Synergy’
|
‘Hard communication with patient and family’
|
2. Communication with patient and family
|
‘A collaborative approach to managing communication’
|
‘Perception of EoL care as useless’
|
3. Clinicians’ competences in EoL care
|
‘Becoming competent EoL care clinicians’
|
‘Initial perception that meeting and integrating with PC specialists is impossible’
|
4. Integration between I- and II-levels PC care
|
‘A possible integrative model with the PCU’
|
‘Difficulty in sustaining the emotional burden’
|
5. Mindfulness of their own emotions
|
‘Training course to support professionals’
|
Theme 1. Relationships between I- and II-levels, passing from obstacles to synergies.
As the first result of the training, the meanings shifted from what we denominated "doubt and disagreement" to "knowledge and synergy". Before the training, the HPs primarily emphasized a lack of specific guidance on PCU activities. They expressed the need to receive basic relevant information on PC, especially its objectives and its procedure, to advice a patient and her/his family about PC provision. The major deterrent was represented by the moment of the patient’s discharge from the hospital to hospice or home care. HPs revealed they needed information about how activate PC provision after hospitalization.
"There needs to be clarity on the figures of reference for health professionals and PCU, the goals of PC, and how PCU works" (FG 3 Ph).
“One of the doubts I have is on when to call in palliative-care medical advice” (FG 1 Ph).
Furthermore, there does not appear to be an official agreement indicating which hospital specialist is responsible for PC patient management. This not only creates obvious delays in requesting and providing assistance but also involves a conflicting decision-making process about treatments. Physicians and nurses, within the same wards, often disagreed on treatments. Participants were not fully aware of the local network, while they were aware of the weakness and the precariousness of their therapeutic programme, mainly when carried out at the patient's home. HPs saw the risk that the continuity of care might disappear.
“Our opinion was to suspend the treatment since the chances (of survival) were very few, but the specialist wanted to try a last line anyway, despite the patient…being already in desperate conditions. So there is no agreement between us" (FG 1 Ph).
“This is a problem that doctors often cause us…. They often demand things that are impossible to achieve” (FG 2 N).
Once the hospital professionals received training on PC, they became aware of the broader picture and organization of PC, the paths for pursuing its integration within daily hospital activity and its implementation outside hospital structures. Additionally, having a better comprehension of the roles and profiles of the professionals working in this service allowed the other hospital professionals to be more attentive and sensitive in facilitating palliative doctor consultancies.
“It was useful to get a clear definition of the meaning of palliative care, in relation to care and professional roles with them (PCU staff)” (FG 7 Ph).
Having clarified that PC needs can actually be met by the PC specialist once a PC plan is activated led the participants to feel a sense of synergy with colleagues that seemed to facilitate inter-professional relations. The presence of the palliative specialist helped trainees to achieve a new perspective.
“Now, after the training, there is a lot more awareness (on PC), and we can work in line with the medical staff, whereas before, when we had a patient in pain, we were in a situation where no one would take on the final provision for the treatment” (FG 8 N).
“With the introduction of the palliative doctor, we are facilitated in the assistance and decision making by coordination with the palliative doctor” (FG 11 Ph).
Theme 2. Communication with patient and family: ‘a collaborative approach to manage communication’.
The relationship and communication with the patient's family were reported as particularly strenuous by the professionals. Among the aspects highlighted by the participants were dealing with suffering and incurable conditions, the nature of the information they are in charge of communicating (e.g., poor prognosis, recurrent disease, last line of active treatment, transition from active care to PC) and the underlying issues of communication skills and personal ethics.
"I'm faced with the dilemma: “What should we communicate and how?” “I sometimes ask myself whether I should communicate the diagnosis or not" (FG 7 Ph).
"Since I do not know what the patient's wishes are, I often refer to the family's judgement" (FG 7 Ph).
"Each of us is self-taught in this field, but in reality, there are communication techniques that we absolutely do not know; we lack communication training" (FG 1 Ph).
Participants felt that communication with the family was very problematic and listed some typical situations, such as when the family members cannot accept the fact their relative's disease is inevitably worsening towards death or when a family member asks to continue a useless therapy.
"It is necessary to help the family understand the meaning of pain therapy in relation to the process of accompanying the patient towards death; many times, the medical staff is forced to resort to a defensive medicine, just because the family are not entirely convinced that this person, in the end, is dying" (FG 5 Ph).
They stressed that this issue remained a critical point despite having undergone the present training course and began planning further training that could help them address their communication needs towards a collaborative approach with PC professionals.
"It is important to organize the approach together with colleagues, with the patient and his/her family, a possible caregiver" (FG 1 Ph).
"Our problems with communication lie largely in the lack of training" (FG 3 Ph).
Theme 3. Clinicians’ competences in EoL care: ‘becoming competent clinicians of the EoL’.
Participants shifted from what we called "sense of uselessness towards the EoL" to "discovering the 'treatments' of the EoL". In fact, participants felt a sense of uselessness, of 'having their hands tied'. Before the training, pain was a cause of conflict among nurses and physicians: on one hand, the physicians considered the problem of the patient's pain already solved, while the nurses thought there was a lack of pain therapy culture. Participants were more sensitive to the patient's global suffering:
“The problem is precisely the therapy of pain, which perhaps we have not yet understood how it should be done, we see the patient suffering, but sometimes we have our hands tied" (FG 4 N).
“We often ask family members to allow us to give (PC) a try, … for something that will probably prolong the patient's suffering and that brings no apparent advantage to the patient's well-being. So, there is an insecurity that we all have towards these choices" (FG 1 Ph).
The participants discovered the importance of EoL treatments, as they reported a higher sensitivity and attention to the patient at the EoL after training. Nurses recognized that physicians, after the training, were more likely to involve palliative doctors, when before they felt more embarrassed. All the HPs gained a clear understanding of the area of intervention of PC, namely, the response to the needs of the person, even when they could no longer manage the treatment of the disease.
Nevertheless, the problem of identifying psychosocial and spiritual needs remained in both the pre- and post-training FGs.
Participants understood that the intervention of the PC specialist is needed to address the complexity and multiplicity of symptoms and needs that cause suffering in the patient.
“Surely our doctors have become confident enough to call the palliative doctor, and this alone is an important step ahead" (FG 10 N).
“For our work, we should have a greater knowledge of what palliative care is" (FG 9 Ph).
Theme 4. Integration between I- and II-levels: ‘a possible integrative model with the PC Unit’.
From the "initial perception of the impossibility of meeting and integrating the PC specialists" and being somewhat powerless, participants shifted to an "understanding of the process, which will facilitate PC inclusion in their work". In fact, the first reaction of the professionals revealed their doubts about the feasibility of PC. The expectations of participants before the training were to receive not only theoretic notions but also concrete proposals they could transfer to the patient's bedside. The first obstacle was traced back to organizational problems. HPs declared that working schedules were short and that the organization often did not allow a method that was different from the one traditionally intended, where it is the doctor alone who interacts with the patient and the family. Participants thought that more complex approaches, such as those proposed by palliative specialists involving several actors, were challenging to apply.
“I am often involved in the most difficult part of setting up the PC programme and coordinating everyone, from my colleagues to the patient, family, and a possible caregiver" (FG 1 Ph).
“Even doctors, however, are always struggling to involve the palliative doctors. They always wait until the last moment" (FG 4 N).
The participants' understanding of the organization within the PCU seemed to have facilitated the involvement of the palliative doctor's consultancies within the care. Participants became aware of the practical possibility of activating PC and showed the need for greater integration of PC specialists within the examined operating units (OUs).
“We should involve palliative specialists more and more, so they can get to know our patients, the dynamics at our department, and grasp the mesh of our organization" (FG 9 Ph).
Still, some HPs perceived organizational boundaries and constraints.
“What we will discover is whether we can implement PC on a practical basis, with the patient. However, in this setting, there is neither the time nor the mindset to use this approach to the patient. Because we are unable to do it... because of the organization” (FG 3-4 N & Ph).
Theme 5. Self-consideration of their emotions: ‘training course to support professionals’.
The last theme emerging from FGs regarded the difficulty of the professionals in sustaining, over time, the emotional charge of daily contact with patients and families who have EoL situations.Following training, professionals in the FGs recognized above all the need to receive psychological support themselves to face complex EoL situations.
“Plus, we don't receive much attention ourselves. In fact, the staff suffer... from an emotional point of view. You deal with it on your own. You can take an individual route, but it's not enough. For years we've been claiming that we need support for the staff” (FG 2 N).
The risk of burden was perceived especially by nurses, who felt they would gradually become unable to help anymore because of the intensity of emotions experienced. HPs reported that they were not able to identify, welcome and process those strong feelings. Both personal development and preparedness were needed to cope with the phenomenon.
“Manage this impact requires the right maturity, and the right preparation; the psychological aspect is important for the family, it is important for the doctor, but it is also important for the nurse and the assistants who are in contact with the patient on a daily basis” (FG 2-6 N & T).
From the post-training FG, the previously highlighted needs and the fears expressed by the participants related to the risks of emotional stress led the way to a precise awareness. It appeared that the requests for help became explicit, even if not yet well circumstantiated: from training to communication to the care for HPs, to emotional support in the management of complex cases. Participants recognized the training as an occasion for discussion and sharing of the most complex problems. The shared search for common solutions could become a support strategy.
“We should establish a mutual-support group. Moments to dedicate not only to the discussion of cases but also of what has caused emotional reactions in the colleagues” (FG 8 -12 N & T).
Triangulation outcomes
The participants were very active and participatory in the whole path of training and research, allowing the collection of very interesting data in both our quantitative and our qualitative research. The triangulation of data led, in most cases, to both confirmatory and novel results.
The results obtained highlighted the significant amount of knowledge acquired by the participants after training, in terms of increasing the knowledge on PC and in terms of the change in meaning that they attributed to phenomena related to chronicity and incurability, which they encounter daily in their professional practice.
In both quantitative and qualitative research, the results, in synthesis, highlight:
a) the development of a new concept of PC, centred on the response to the holistic needs of people (Domains: D06, D07, D08 and Theme 3);
b) the understanding that PC can also be extended to non-oncological patients in advanced illness stages (our training was direct to Geriatrics and Nephrology/Dialysis professionals);
c) the empowerment and increased self-esteem that HPs gained, from learning about the logistical and structural organization of PC, to activate and implement PC (Domains: D01, D014, Theme 1, 3 and 4);
d) the need to share personal aspects of their professional life (this result emerged only in the qualitative research: Theme 5);
e) the appreciation of cooperation and the joining of multiple competences towards a synergistic approach and enhanced outcomes (Domain: D012 and Theme 4).