Introduction
Neurological diseases are often progressive, with physical and sometimes mental deterioration. They can also lead to death, although patients more often die from other causes (Koekkoek et al., Reference Koekkoek, Dirven and Sizoo2014; Oliver et al., Reference Oliver, Borasio and Caraceni2016). This means that patients and family members might experience that their earlier existence and lives are threatened and as a result, existential issues can arise for them both. This could, for patients, manifest in experiences of existential loneliness with death anxiety, feelings of unfairness, guilt and shame, and searching for meaning, and family members might feel lonely and isolated, which they can have a need to discuss (Ozanne et al., Reference Ozanne, Graneheim and Strang2013, Reference Ozanne, Graneheim and Strang2015). For healthcare professionals (HCPs), adopting an open approach to meeting patients and family members to discuss existential issues early on and not only at the end of life can be regarded as part of a health promotive palliative approach (Cohen and Deliens, Reference Cohen and Deliens2012; Sawatzky et al., Reference Sawatzky, Porterfield and Roberts2017). However, despite awareness that certain issues are important to patients, HCPs do not always invite discussion about these concerns because of fear, and the lack of knowledge and time (Strang et al., Reference Strang, Strang and Ternestedt2001).
Existential philosophy reflects on human existence and its limitations (Tomer et al., Reference Tomer, Eliason and Wong2008). Questions about meaning, freedom, loneliness, and death (Yalom, Reference Yalom1980) are existential issues that persons with diseases deal with, but there is a lack of education in this area (Eriksson et al., Reference Eriksson, Bergstedt and Melin-Johansson2015). In order to provide person-centered care (Britten et al., Reference Britten, Ekman and Naldemirci2020) or person-centered palliative care (Öhlén et al., Reference Öhlén, Carlsson and Jepsen2016; Österlind and Henoch, Reference Österlind and Henoch2020), it is important to listen to the patient's expression of existential issues.
To achieve such person-centered care, HCPs may need to adjust their attitudes to patients with existential issues. A randomized intervention aiming to assist HCPs in this regard has shown to be effective (Morita et al., Reference Morita, Murata and Kishi2009). Other interventions have shown that HCPs who care for patients with untreatable cancer are more comfortable communicating with patients about existential issues after the intervention (Henoch et al., Reference Henoch, Danielson and Strang2013; Udo et al., Reference Udo, Melin-Johansson and Henoch2014), and it is easier for them to identify situations where existential issues are visible (Browall et al., Reference Browall, Henoch and Melin-Johansson2014). Moreover, they can reflect on how to be open to conversation and make use of both words and silence to good effect (Strang et al., Reference Strang, Henoch and Danielson2014). With such approach, HCPs are also reported to experience less work-related stress, (Udo et al., Reference Udo, Danielson and Henoch2013) and increased perceived knowledge, awareness, and preparedness (Sand et al., Reference Sand, Olsson and Strang2018).
Nevertheless, few studies examine how HCPs address existential issues that arise for patients with neurological diseases and their family members. The severity of many neurological diseases, with deterioration over time and life-limiting or acute impediments, indicates that attention should be given to existential issues for patients and their families’ right from admittance to the neurological clinic. The purpose was to examine the experiential impact of an educational program for nurses designed to facilitate discussions of existential issues with patients and family members in neurological wards.
Methods
Design
The design of the study is a qualitative evaluation of an educational program facilitating nurses’ discussion of existential issues with patients and their families. The evaluation was conducted before and after participation, with data generated in focus groups.
Participants
All registered and enrolled in- and outpatient care nurses at a neurological clinic at the Swedish university hospital were invited to participate in an educational program where they discussed existential issues. They received verbal and written information about the study from one of the researchers and 18 nurses approved participation. Written informed consent was obtained from all participants.
A total of 18 nurses (13 from the outpatient clinic and 5 from the inpatient clinic) approved participation, which resulted in two groups from the outpatient clinic and one group from the inpatient clinic (Table 1).
Table 1. Participants’ background
a Undergraduate nurse education includes at least 3 years university education and qualifies for a national licence. Enrolled nurse education includes at least 1.5 years at a secondary education/college education level.
Education program
The nurses took part in a program of education (Table 2) on how to discuss existential issues with patients affected by neurological diseases and their family members. The program included existential issues as Freedom, Relationships and Loneliness, Life and Death, and Meaning, which all are questions Yalom (Reference Yalom1980) describe as essential in existential questions in patients with lethal illnesses. This program was developed from a training intervention in conversations about existential issues for nurses working with patients with cancer (Henoch et al., Reference Henoch, Danielson and Strang2013, Reference Henoch, Strang and Browall2015). As family members might be affected by their family member's illness (Olsson et al., Reference Olsson, Markhede and Strang2010; Ståhl et al., Reference Ståhl, Fekete and Henoch2020), the program also included questions related to their situation.
Table 2. Characteristics of the educational program
Data collection
To evaluate nurses’ reflections before and after their training in discussion of existential issues and to examine their experiences of the program, focus groups were carried out with each group before and after the program. The interviewer (SS) and the observer (IH) carried out the focus groups before and 6 months after the program. They are both researchers with solid experiences of interviewing and of focus group methodology. A semi-structured interview guide was used (Table 3) with questions about experiences of discussing existential issues with patients and family members and reflections about the program. The guide has been developed based on the aim and to gain more knowledge about the participants views on existential issues and how they handle these conversations before and after the education. In addition, session five of the program was included since the participants then could evaluate the program in direct connection to it. In this way, data were obtained before the program, directly after and after half a year. The course leader delivering the education (CB) collected data during the fifth session of the program, which was structured by the participants’ own experiences of conversations about existential issues and their experience of participating in the program. CB is an experienced course leader and a clinical nurse specialist and teacher with expertise in palliative care and supervision of nurses and nursing students. Sessions one to four were part of the education programme and not included in the analysis (Figure 1).
Fig. 1. Data collection. The focus group interviews before and after the program lasted for around 60 min and the focus group discussion in the fifth session lasted around 90 min.
Table 3. Interview guide before and after education
The first group started in January 2016 and the last was completed in November 2016. All data collection took place at the hospital in an undisturbed room, with interviews and discussions audio-recorded and transcribed verbatim.
Analysis
Data were analyzed with an inductive approach using qualitative content analysis (Graneheim and Lundman, Reference Graneheim and Lundman2004; Graneheim et al., Reference Graneheim, Lindgren and Lundman2017; Lindgren et al., Reference Lindgren, Lundman and Graneheim2020). All interviews were read several times to reveal emerging patterns. Data from the focus groups before and after the program, as well as data from the fifth session of the program, were first analyzed separately. The first author (AO), divided the text into meaning units, and each meaning unit was then condensed, abstracted, and labeled with a code. Codes with similar content were thereafter abstracted and sorted into subthemes. This process was then discussed with the last author (CM-J) until consensus was reached. The authors have a strong background in the methodology. In this phase, it was obvious that content from all the interviews could be sorted and abstracted into the same subthemes, and within each subtheme differences before and after the education were analyzed. In this way, all the subthemes were built up with data from all interviews, both before and 6 months after the program and from the fifth session. The subthemes were then abstracted into two themes, which were then abstracted into a main theme. To ensure stringent and trustworthy interpretations, the analysis moved back and forth between the steps: meaning units, codes, subthemes, themes, and main theme, and between the parts and the whole text. All authors reflected and discussed the analysis until consensus emerged.
Ethical considerations
The Research Ethics Committee approval was obtained from the Regional Ethical Committee in Gothenburg (Dnr. 426-08).
Results
Remaining difficulties but with a deeper understanding
The main theme “Remaining difficulties but with a deeper understanding” illuminates how the nurses found strategies to manage existential issues in difficult conversations, at the same time working to counteract internal and external barriers to communication. Finding these strategies was easier after participating in the program, as the nurses felt more comfortable asking about existential issues, were more at ease being quiet and showing that they did not always have answers, and were calmer about staying with the person in their time of need. The experiences of nurses discussing existential issues varied. It was considered a difficult part of work, but the education gave them a deeper understanding of the area and strategies to use in conversations. The main theme, themes, and subthemes are shown in Table 4 and in the text below.
Table 4. Description of main theme, themes, and subthemes
a The participants gained a deeper perspective on things after the program. Internal and external barriers to communication, as well as strategies for managing conversations about existential issues, existed both before and after the program, but the nurses found it easier to find relevant strategies to use in the conversations after participating.
Counteracting internal and external barriers
Nurses described trying to counteract internal and external barriers to discussions with patients and family members about existential issues both before and after participating in the program. Obstacles included feeling insecure and fearful in the conversations and that the health facility environment was not conducive to conversations, for example, due to lack of time and privacy.
Feeling insecure and fearful
The nurses felt insecure and fearful about discussing existential issues both before and after the program. It was difficult to know what to talk about and the nurses’ insecurity increased if patients did not want nurses to talk with family members or if family members avoided conversation, even though they probably needed it.
Such insecurity and fear was worse among less experienced nurses who were prone to self-criticism. They wished they had managed situations differently with more control, and had been able to give answers, even though that was impossible and it was more important to listen. They found it difficult to initiate conversations as they were unsure if the person actually wanted to talk.
Group 3 before education: *IP1: I think it's difficult too, if we get, for example, a patient with ALS who has deteriorated — maybe has pneumonia or something — then I don't feel, I don't know if she or he wants to talk about existential issues// You feel you like, you might get it wrong, or if I just say like, “Have you thought about death?”, She or he might not want to talk about it, but just be treated here and now.// IP2: I prefer the patient to say something himself so you don't put your foot in it, assuming that you probably want to talk about it because you are so ill.
*I, interviewer; IP, interview person.
By avoiding the subject, it was easier to pass responsibility back to that person and focus on practical tasks, such as giving an infusion.
Feelings of insecurity and fear were less frequent after the program, which is described in subthemes below the theme “Finding strategies to manage conversations about existential issues”.
Being inhibited by the health facility environment
The nurses felt that the health facility environment inhibited conversation about existential issues, with no difference before and after participating in the program. Lack of time and privacy to talk and having to cover for each other were examples of barriers. They felt that it was degrading to the person if they started a conversation but had no time to listen, so they avoided it.
Group 3 before education: IP3:I think that such questions need time, that you have time to sit down, but unfortunately that time doesn't exist. //IP2: That's also something that means you might not initiate it [a conversation], because if you start talking, then I might not have time to sit down and answer or listen to what you want to say, and then I think it's degrading to that person.
They felt guilty when conversations about existential issues took time, but they gave it higher priority after the education.
Finding strategies to manage conversations about existential issues
The nurses found it difficult to address and start conversations about existential issues with patients and family members, and looked for strategies to acknowledge their questions without having answers, while staying with them in their time of need. The nurses tried to create time for the conversations on the basis of the resources available to them. After the program, the nurses still found all these aspects difficult, but the reflections and strategies they took away from the course sessions helped them come to a deeper understanding of how to address and manage the conversations.
Addressing questions without answers
Both before and after the program, existential issues were described in terms of philosophy of life, meaning of life, questions of why, guilt, shame, fear, life and death, future, time to die, and arose irrespective of neurological disease. Broaching these subjects was difficult, so nurses sometimes avoided asking about them, as they seldom had any answers.
Group 3 before education: IP3: Now I think it's much easier, after all these years I have learned, I think, and maybe also from experience and training I have done in this area, but from the beginning I didn't think it was so easy.//IP1: I think it's difficult and I think it's because I'm pretty new as a nurse. I think you're in a very vulnerable … I think it's very difficult to go to a patient who's just received a difficult diagnosis because there's so much pressure to feel you have to have control over everything and have answers to all their questions, yes, I think it's difficult and even though the patients probably don't expect you to have answers to the existential questions, I think the most important thing is to listen, but it's difficult when you feel you might not be that experienced … (All agreed.)
The nurses felt that honesty was important, even when no answers could be given, but some nurses withheld information to avoid frightening the person.
When a conversation did take place, it often focused on existential issues in relation to how patients and family members managed their life situation and how the remaining time could be best used. Encountering people anxious about death was particularly difficult, and the nurses requested more knowledge about how to manage these conversations. After participating in the program, it became easier for the nurses to address these kinds of questions, for example, they began to ask counter-questions so the person could answer what they thought about the future themselves. The nurses also became more confident about not having answers and realized that silence could be the best response. Experience and long-running care relations also made conversation easier.
Being together in difficulty
The nurses emphasized the importance of being with the patients and family members in their feelings of sorrow, fear, anger, guilt and shame, and listening without judging, helping them with strategies to manage life. Sometimes, having separate conversations with patients or family members was relevant, as they wanted to discuss different issues. Some nurses thought it was important that the patient or family member navigated the conversation, while other nurses felt they should be the ones to actively ask about existential issues.
Group 1 before education: I. As staff, do you introduce such existential questions yourself or is it the patients who do that?//IP1: Often you ask how they feel, then it's the patients, and then everything kind of comes out. (Several agreed). IP2: It's like, you open up a little to them and see what comes of it. IP3: In the case of epilepsy, you might, because sometimes, some say, I'm really scared, really scared of getting seizures. Then you might ask: “What are you afraid of? What do you think'll happen?” And then they might come out with it – “I'm worried about not waking up after a seizure, or that I still think I could die during a seizure”.
More experience and knowledge made it easier to ask questions and stay with patients and their families in their difficulty. After the program, nurses reflected more on existential issues, felt more prepared and safe, and had strategies for asking questions. Their own responsibility became more visible, which also helped them to strategically manage existential issues in conversations. They had more courage to enquire more actively and use open questions, to address a person's questions directly and acknowledge their anxiety, and give them time to talk.
Group 1 after education: IP4: I think we got suggestions for good questions we can ask (several agreed). I've written some down. IP5: And then safety, precisely that you feel secure and self-confident with these questions. I think what this education has given us is that we can talk and discuss.
In addition, the program drew the nurses’ attention to the fact that existential issues also included positive aspects, so a more positive approach could be taken in regard to talking about meaning, life, and plans.
Creating time for conversation
The nurses created time for conversation even though there was none. They prioritized talking to newly diagnosed patients, those who were transitioning to a more aggressive treatment or whose condition had deteriorated, or patients who were afraid of something in particular. The nurses prioritized urgent conversations over other work tasks.
Group 1 before education: IP6: You have to give time to patients who need to talk. It's … we don't have time, but for these patients we need to take our time. IP7: I think where we work, a number of us work with the patients at the same time, so if we see someone is with a patient who needs more time, we can solve it …
After the program, the nurses were more emphatic about existential issues being part of their work and that it had to be prioritized. They thought too little time was available for these conversations.
Supporting each other
One strategy for managing conversations about existential issues was for nurses to support each other in the team. They sought help from team members and supported each other by giving constructive feedback and backing each other up, allowing time for discussion about existential issues. This was easier in the outpatient care unit. Support from the hospital church was also appreciated.
After the program, the nurses pointed out the importance of reflection and receiving support from colleagues when faced with difficult conversations and in their daily work. Some nurses had previously received professional supervision and found it valuable, although they rarely found enough time for reflection at work.
Group 2 after education: IP1: Given what we work with, all the time, and are more or less exposed to every day, it's really important that we discuss existential issues and receive guidance. That would pretty much be a given. (Several agreed). IP2: But there I think that … the team is an important part, because, if you feel secure in the team, you have your colleagues, they kind of substitute for reflection time in some way. IP3: That's exactly what I mean.
The program gave the participants new and deeper perspectives and strengthened their skills in managing existential issues, helping them to collectively reflect and listen to colleagues’ stories. They also reflected more on conversations that had been less successful and how this could be avoided in the future. Some wished the program was longer and provided more reflection and tools to use. A few said they had not learned anything and that it had not changed their way of working.
Discussion
The impact of an educational program designed to facilitate the discussion of existential issues with patients and family members was studied from the perspective of nurses in neurological wards before and after participating in the education program. The results show that the program gave nurses a deeper understanding of existential issues and how to manage these conversations; it also increased their awareness of internal and external barriers that aggravated the conversations. Being aware of the barriers and receiving strategies of how to manage them made it easier to realize the conversations. Both before and after the program conversations about existential issues were perceived as taxing. However, training, deepening knowledge, reflections in groups, experience, and support from colleagues helped the nurses initiate and conduct these necessary interactions with patients and their families, which can be compared with other studies (Henoch et al., Reference Henoch, Danielson and Strang2013; Strang et al., Reference Strang, Henoch and Danielson2014). Working in a neurological in- or outpatient care unit demands a lot from nurses. Some patients need acute care, while others need long-term contact; some patients receive medical treatment with positive outcomes, while others simply receive symptomatic treatment, sometimes with focus on palliative care. Such varied circumstances made it difficult for the nurses to know when and if they should initiate conversations about existential issues, and the pressure of not knowing what to say, as well as the lack of time made this even more difficult. Although comparable results are found in palliative care contexts (Strang et al., Reference Strang, Henoch and Danielson2014), managing conversations about existential issues may be more difficult in neurological care units, as these issues are not an obvious part of the care. The results showed that irrespective of diagnosis, existential issues appeared, but it seemed to be easier for nurses who worked with patients with lethal diseases to initiate this kind of conversation. Providing existential support independent of the stage of a disease can be seen as promoting and part of the integration of a palliative approach to care (Cohen and Deliens, Reference Cohen and Deliens2012; Öhlén et al., Reference Öhlén, Carlsson and Jepsen2016; Sawatzky et al., Reference Sawatzky, Porterfield and Roberts2017).
Lack of privacy and time were environmental factors that made discussing existential issues difficult. These results complies with other studies (Strang et al., Reference Strang, Strang and Ternestedt2001; Browall et al., Reference Browall, Melin-Johansson and Strang2010; Keall et al., Reference Keall, Clayton and Butow2014). Even if the nurses tried to prioritize these conversations, limited resources and organizational difficulties remained. The environmental factors did exist both before and after the education and such limiting factors need to be addressed and resolved on both a collegial and organizational level. However, the education program made them aware of these problems and partly they re-prioritized the work after the program to improve the possibility of existential conversations. These results suggest that education in existential issues is important and might partly affect negative environmental factors.
Creating trust, giving time and attention, being sensitive, and asking questions are factors that have been shown to establish a deep relationship between nurses and patients in a palliative home care context (Hemberg and Bergdahl, Reference Hemberg and Bergdahl2020). This compares with our results, which highlight how nurses remained with the person in their difficulty, asked questions, and created time for conversations. Although the nurses in our study described this as difficult, it became easier to use these strategies after participating in the program. It is, therefore, relevant to consider whether education can be a way of supporting nurses at neurological care units in helping them manage conversations about existential issues.
A study comparing palliative care education in European countries found that it is not a mandatory subject within undergraduate nursing education (Martins Pereira et al., Reference Martins Pereira, Hernández-Marrero and Pasman2021). The impact of training in our study varies, which might be related to differences in the nurses’ professional background. Some nurses had, for example, worked many years with patients diagnosed by ALS or brain tumor and they presented themselves “clinically trained” due to that. However, both the experienced and the more inexperienced nurses found the education helpful. Having participated in the program relevant to our study, the participants described receiving a deeper understanding of existential issues and strategies to more easily manage these difficult conversations. Other training interventions also found that the nurses became more comfortable talking about existential issues (Henoch et al., Reference Henoch, Danielson and Strang2013; Udo et al., Reference Udo, Melin-Johansson and Henoch2014), found it easier to actively initiate conversations, and were more comfortable accommodating silence in the conversations (Strang et al., Reference Strang, Henoch and Danielson2014). Training in this regard has further been shown to increase knowledge, awareness, and preparedness (Sand et al., Reference Sand, Olsson and Strang2018). The program taught the nurses’ new ways of addressing existential issues. They became more aware of questions patients and families might ask and were helped to initiate conversations earlier and pose more challenging questions themselves. They also learned to use silence as a tool in the conversation. By capturing opportunities for discussions, they felt more responsibility for addressing existential issues, and this compares with other study results (Browall et al., Reference Browall, Melin-Johansson and Strang2010). Indeed, a prerequisite for person-centered palliative care may well be a nurse's skill in opening up to conversations with the patient and listening to their life story. This may, in turn, be of importance for patients and/or family members reflections on their life (Öhlén et al., Reference Öhlén, Carlsson and Jepsen2016; Henoch and Österlind, Reference Henoch and Österlind2019; Österlind and Henoch, Reference Österlind and Henoch2020).
Strengths and limitations
Existential issues should be noted in contexts other than cancer and end-of-life palliative care. These issues are as common among patients with neurological diseases. One strength of our study is that it focuses on education in existential issues for nurses in relation to the care of this patient group. Another strength is that it also focuses on family members. As the whole family's life situation is affected, existential issues might surface for them too. A third strength is the participants’ diversity of age and work experience, as it gives a broader perspective than if the group had been homogenous.
One limitation is that the participants were self-selected and might be interested in existential issues even before the education. For this reason, further research is needed to explore the impact of the program for broader groups of health professionals. Another limitation is that most of the participants worked in an outpatient care unit. Due to the difference in care and time available for conversation, it would have been valuable to include more participants from the inpatient care unit. However, as the analysis focuses on all the data, their experiences have also been examined. Another limitation is the lack of male participants. Unfortunately, the few available male nurses did not wish to participate. Finally, it would have been advantageous to include several hospitals rather than just one.
Conclusion
Education in existential issues is relevant and important in the context of care for patients with neurological diseases and their family members. The results reveal that after participating in the education program, the nurses became more confident in discussing existential issues and in the contexts of both acute care and in-patient care for progressive diagnosis. The knowledge that internal and external barriers impede communication should compel services for patients with the long-term condition with risk for disability and/or progression. The knowledge of strategies and barriers could be used to adapt program of education. Although the tradition of including existential issues in conversations is not as great in neurological care as in palliative care, it is clear that these issues need to be addressed.
Acknowledgment
Our heartfelt thanks to Ulla-Carin Lindquist Foundation for ALS research, Institute of Health and Care Sciences, University of Gothenburg; Susann Strang, associate professor and focus group interviewer before and after the program, and Christina Berg, RN, leader of the program.
Conflicts of interest
None declared.
Funding
This work was supported by the Ulla-Carin Lindquist Foundation for ALS Research, Institute of Health and Care Sciences, University of Gothenburg.
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