In this section we will describe the process of development of CURA. The process consisted of three phases: Identifying Needs, Development and Dissemination. See figure 1 for an overview of the process and the steps we conducted in every phase.
Phase 1: Identifying Needs
This phase focused on the experiences and needs of (potential) end users. The researchers conducted a literature review in order to gain a general view on 1) moral challenges nurses and nurse assistants encounter in palliative care; 2) existing ethics support interventions and the perceived lacunas and/or limitations of these interventions and 3) on the envisioned research design. The insights from the literature were discussed in the first CoP.
1st CoP session
Ten stakeholders attended the first CoP work session (see Table 1). All members were informed about the aims of the research, i.e. developing a low-threshold instrument for ethics support in palliative care, and about the proposed participatory development research design.
Participants confirmed the need for low-threshold ethics support in order to deal with their moral dilemmas in daily practice, and responded affirmatively to the findings of existing research on high levels of moral distress among caregivers in palliative care. Most participants were already acquainted with ethics reflection. They indicated that ethical reflection sessions are highly useful and desirable, but take up a lot of time, oftentimes resulting in prematurely ceasing these sessions or not organizing them at all. Another challenge mentioned by the participants related to the high complexity of existing instruments, and that a trained facilitator or ethicist was needed each time to facilitate the reflection.
Subsequently, the participants were asked to jointly reflect (in smaller groups) on what should be the characteristics and criteria of the envisioned instrument and the research design. After a plenary discussion, consensus emerged on the following aspects: (1) characteristics the envisioned instrument, (2) its context of use, (3) its goals, and (4) the study design. The output of this first CoP is summarized in Table 3.
Table 3
Output 1st CoP: Criteria of the instrument
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Characteristics
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- Low in complexity
- Appealing and recognizable name and design
- No elaborate training required
- Central place for patient’s values
- Guidelines and protocols taken into account
- Time efficient
- Both individual and joint use
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Context
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- Educational and care setting
- Generic: applicable in all settings of palliative care (hospice, hospital, home care and nursing homes)
- Usable for all educational levels of nurses and nurse assistants
- Applicable in daily practice
- No extra ‘bureaucratic burden’
- Easy available
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Goals
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- The instrument creates sensitivity and awareness of moral challenges
- Empowers caregivers to deal with difficult situations and moral distress
- Act in accordance with guidelines or deviate from them when considered justified
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Study design
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-
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Phase 2: Development
Once the needs of the stakeholders and criteria of the instrument were clear, we started the development of the instrument. The instrument was developed through cyclic-iterative co-creation, i.e. involving users and other stakeholders in consecutive cycles of designing, piloting, and evaluating the concept-instrument. In between cycles, a CoP session was organized in order to discuss the findings of the pilot, and how the instrument should be adapted.
Drafting the first version of the instrument
In the six-month period between the first and the second CoP work session, we drafted a first version of the instrument (figure 2). In doing so, we took the criteria and characteristics of the instrument as brought forward during the first work session of the CoP as our point of departure. In addition, we built upon prior experience with (developing) tailored ethics support instruments 15 and with Moral Case Deliberation (MCD). MCD is a form of clinical ethics support, helping health care professionals to reflect systematically on their actual ethical questions and reasoning. Some key principles of MCD that are: 1) taking one’s own experience as a starting point for moral reflection; 2) articulating the moral dilemma and underlying questions at stake; (3) exploring different moral viewpoints by venturing into the positions of stakeholders and into what is important to them; 4) taking this exploration as a basis for considering what to do in the situation at hand, and establishing a well-founded choice for a certain course of action. Furthermore, dialogue is highly important in MCD, as it is to foster moral learning. Therefore, participants are encouraged to listen to each other, ask open and critical, rather than convince the other, and being open to other viewpoints, postponing one’s own judgements.
These principles, together with the input of the first CoP, resulted in a draft-instrument consisting of five steps:
2nd CoP session
In the second CoP work session, the first draft-version of the instrument was presented and participants were asked to provide feedback. They also tested the instrument in small groups, using a either a professional or personal case involving a moral challenge. The following feedback and recommendations emerged from this working session.
After testing the instrument, the participants argued that a first step should be added, in which the situation should be described. In addition, a step in which one’s first response to a situation, including emotions and, possibly, one’s physical reaction, is dealt with was missed. Furthermore, it was indicated that the terms ‘value’ and ‘norm’ should not be used, as not all envisioned users (caregivers with diverse educational backgrounds) might understand what is meant by these terms. This might generate confusion and obstacles for use. It should also be clearer that the user is invited to reflect on what is important for themselves. Also, the patient’s perspective should be more prominent. Moreover, legislation, regulations and protocols should have an explicit place in the reflection. It was also mentioned that there should be room for uncertainty; acknowledgement for what you do not (yet) know. Finally, a moment of evaluation at the end of the steps should be included. Regarding the usage of the instrument, the CoP participants remarked that the instrument should be applicable for nurses with various educational backgrounds. They had some doubt whether the instrument would be feasible for nurses with a vocational education background. Therefore, we included Licensed Nurse Practitioners in the testing grounds, to ensure their perspective was taken into account.
Furthermore, the CoP members working in education suggested testing the instrument among nurses following a continuing education program. The researchers were invited to introduce the instrument during the ethics course of the continuing education program.
Drafting the second version of the instrument
Based on the input of the CoP we adapted the first version into the second version of the instrument (Figure 3).
Piloting the second version of the instrument
We tested the second draft in a pilot with nurses in training. They received an introduction to the instrument and the study, used the instrument in class, and subsequently applied the instrument in their own work environment, involving their colleagues, and evaluated it.
What stood out in their feedback was that the instrument helps to clarify a moral question or doubt, to exchange knowledge and insights and to obtain advice from colleagues. In particular, looking at the case from the perspectives of different stakeholders (step 5) was considered supportive in dealing with the moral issue at hand. However, they indicated that many moral issues still remain difficult also after using the instrument. Also, they found it hard to find time to use the instrument with colleagues during work hours. Step 8 ‘Can you proceed with this?’ was perceived as vague. It was unclear to the nurses-in-training what was meant with this question. Furthermore, eight steps was considered too much.
Drafting the third version of the instrument
Taking into account the evaluation of the instrument by the nurses-in-training, we developed a third draft-version of the instrument (Figure 4). We reduced the number of steps to four steps, consisting of several substeps within each step.
The first step, which we called ‘Concentrate’, is about focusing on the situation at hand, and about zooming in on the moral doubts that caregivers have in them. The second step was new, i.e. we included one extra step devoted to reflection on emotions, called ‘Unrush’. The focus on emotions was not yet explicitly mentioned in the previous versions, however, this was one of the criteria mentioned in the first CoP. The third main step was called ‘Reflect’, venturing into what is of value of those involved in the situation. The nurses-in-training were specifically positive about this aspect. We included a substep, i.e. ‘What do you not know yet or not sure about?’. The fourth step, ‘Act’, focuses on relating moral judgment based on the reflection thus far, to concrete action. Here, we included a substep in which users are asked to relate their chosen course of action to their intrinsic motivation (what they aim for and stand for in their work). Because the nurses-in-training perceived former Step 8, ‘Can you proceed with this?’, as unclear, we changed it into ‘How do you feel about the situation now?’ and ‘Have you come to new insights? With whom would you like to share them?’
These four steps are an acronym of the name of the instrument, ‘CURA’. This acronym makes the instrument recognizable and easy to remember, which is in line with one of the criteria mentioned in the first CoP. We chose the name CURA for multiple reasons, which are discussed elsewhere.
At this point, we involved a graphic designer. We informed the designer about what the CoP members considered important, such as low complexity, an inviting and attractive design, which is also distinctive, recognizable logo. The lay-out should not scare off people who are not used to work with large portions of text. For the final design, see figure 5. We also invited the designer to the next CoP work session, so as to allow him to interact directly with the CoP members.
3rd CoP session
In this session (n=11), the third draft-instrument, now called CURA, was presented and tried out by the CoP members in small groups using a case they experienced themselves. Both content and graphic design were discussed.
Participants considered the name CURA recognizable and inviting. The colors and the logo were unanimously appreciated. Participants agreed that instructions (but not too much) should be given. In addition, some short information about the goal of CURA, and when to use it, should be given in order to properly use CURA without a trained facilitator. Therefore, we drafted a first version of the manual, which provides instructions for proper usage. CoP participants concluded that CURA is relatively easy in use in a relatively short time frame (+/- 30 minutes). The step ‘Reflect’ was the most challenging, but it was argued that this is inherently so, and not due to specific formulation of the step.
Piloting the third version of the instrument
Educational setting
The third version of the instrument was used in vocational training for Licensed Nurse Practitioners and in a continued education program. In both educational settings, the nurses-in-training combined working in practice with part-time education. nurses-in-training received an introduction to CURA, practiced in small group setting under the supervision of the trainers. Next, the nurses-in-training were asked to use CURA in their own work environment together with their colleagues. The nurses-in-training reported about this in the following class. For instance, nurses-in-training were confused by the term ‘palliative’ in the instrument, wondering whether CURA was only applicable for palliative care cases. Furthermore, they mentioned that the instrument was easy in use, however, they struggled to find enough time to use the instrument together with colleagues.
Practical setting
In the third testing cycle we also tested the instrument with nurses and nurse assistants from a large health care organization. Two groups were formed, one with professionals working in an ambulatory setting (n=7), whereas the other group worked in care homes (n=8). For a period of 6 months, these groups convened each month. The groups first received an introduction on CURA and in the following meetings, they used the instrument to reflect on moral challenges they experienced in practice, and gave feedback on the process afterwards. Some participants also used CURA in-between sessions, in practice.
In particular, this group provided us with insights in what happens when CURA is used for a longer period of time (compared to the student group, who evaluated CURA after having used it only a couple of times, mostly twice). First of all, it became clear that users became more confident in using CURA, for instance in initiating reflection sessions with colleagues and in leading the reflection as a facilitator. Furthermore, using CURA seemed to increase participant’s increased confidence in general. During one of the group sessions, one nurse assistant said she felt strengthened when she had to discuss a situation with the physician:
“I could easily express my dilemma [to the physician], because I had already discussed the dilemma with my colleagues using CURA.”
Furthermore, some participants started to use CURA when there was a moral issue within their team. It made them feel empowered and supported:
“The [CURA meeting] was very good. I felt supported, like it wasn’t that weird that I had trouble accepting the situation as it was. Colleagues could see how the situation was for me, which made me feel strengthened in what I was going through.”
Secondly, the researcher (MvS) remarked confusion with regard to the term ‘palliative care’,
as the nurses frequently discussed whether a case that was described was indeed an ‘actual, true’ case of palliative care. In these cases, palliative care was conflated with terminal care, i.e. care at the very last stages of life, rather than care in the face of the end of life at some point, oriented at dealing with symptoms rather than improving one’s health.
Third, the researcher concluded that it is important to appoint a facilitator, who leads the reflection, for instance, by paying attention to whether the steps are being followed. If there is no facilitator appointed in advance, chances are that no one takes action when the reflection goes astray, or when certain steps take up to much time. Subsequently, we incorporated this in the manual.
Finally, the researcher observed an increase of reflective skills in the participants, especially among the nurse assistants, who had hardly received prior ethics education. At first, it was difficult for them to look at the case from the patient’s perspective, or to distinguish between what is important for themselves and what is important to the patient. After a couple of sessions, this started to improve.
4th CoP session
In this session, results of the pilot test groups were presented to the CoP members, and a final round of feedback on CURA was held. Both form and content were discussed in order to finetune and finalize the instrument (see below). The final step, ‘Act’ was considered too long and some questions were omitted, such as ‘How to avoid (possible) negative consequences of your actions?’
and ‘with whom would you like to share [your new insights]’. The tagline of the instrument was replaced with ‘CURA- support for morally difficult situations in care practice’, in order to limit confusion on the term ‘palliative care’. Participants were generally satisfied with the design, but argued for making a laminated pocket-sized card and a poster on the method for common rooms in which meetings take place during which CURA could be used. They also argued for a handout to be found easily online, and for inclusion of the method in existing apps and websites. Finally, it was suggested to adapt CURA into an instrument that involves or is particularly adapted to patients and informal caregivers. Furthermore, the manual was discussed.
Also, in this session, implementation and dissemination were discussed. Participants agreed that, although CURA is to be used independently and individually without too much instruction, people could be trained to facilitate reflections with CURA, and promote their quality within their organization, so-called CURA ambassadors. Hence, they could act as ‘catalysts’ for implementation. It was discussed what a training for CURA ambassadors could look like, and how to proceed with the implementation of CURA in both health care organizations and education.
Third, a proposal for a national symposium on CURA was discussed. The participants agreed on making users from both care and educational settings the primary target group of the symposium, and hence not so much an academic conference, but rather focused on applicability and relevance of CURA in practice. The program should reflect the study’s co-creative process, as well as the fruitful interaction between teaching, research and practice.
Phase 3: Dissemination
The final phase focused on exploring plans for dissemination and future implementation research, together with stakeholders from health care organizations. We concluded this development study with a national symposium. A wide variety of interested participants from health care organizations and educational settings convened. Workshops and presentations were provided by the researchers and participants from the Community of Practice, consistent with our co-creative research design. The focus of the symposium was on disseminating the results, educating people about CURA and creating a support base for an upcoming national implementation study.
Including an outlook on future implementation research was a pressing wish expressed by our CoP members, as they want to ensure that CURA would be sustainable: future implementation strategies was seen as an essential part of the process.