What are the experiences of nursing students on a palliative care unit?

1. Research Outline

1.1. Statement of the study problem, purpose and specific aims

1.1.1 Study problem

The researcher works as a mentor on an integrated palliative care unit. We usually have four to six undergraduate nursing students at a time. Although students expressed that the contacts with our patients were stressful and depressing for them, there has never been a proper collection of information about the students’ experiences.

1.1.2 Purpose

The purpose of this study is to examine the feelings and thoughts of undergraduate nursing students when practising on a palliative care unit and to find out methods to support them.

1.1.3 Aims

The aim of the study is to collect information about the experiences of undergraduate nursing students working on an integrated palliative care unit.

1.2 Research question

What are the experiences of undergraduate nursing students in palliative care?

1.3 The significance of the research

According to Lloyd-Williams and Field (2002), only few studies dealt with nursing education in palliative care. Most of them focused on nurses rather than student nurses (Hjörleifsdóttir & Carter, 2000).

The majority of the studies the author found took part in the UK. A comparison to Germany would be difficult, as the situations are dissimilar (Sabatowski et al, 2002). Here, palliative care is just in the early stages of developing into a speciality (Jocham, 1997). The first palliative care unit was founded in 1983, but a further decade and a programme by the ministry of health was necessary until the total amount of hospices and palliative care units increased (Klaschik, 2001). Palliative care is neither an integral part of the medical nor the nursing education programme (Hoppe,2003). In the issue of palliative care Germany is no ‘development country, but middle class’ (Kettler, 2000).

1.4. The potential contribution to the discipline of nursing

At the moment information from student nurses are collected rarely and without any clear method. All students have first, follow-up and final assessment records during their placement, but students seldom express their feelings there. Most times the team members describe a student as ‘looking depressed’, or a student is found crying. These situations may occur because the students expect themselves to be perfect, or think that the team members have such expectations, like a student in another study (Hjörleifsdóttir & Carter, 2000) did:

‘There is a definite culture in the wards…if you are not running around,…then you are not working. I think this is especially for students because we are being assessed while we are there.’

The author wants to stress that this is not the expectation from her or her team members.

A collection and analysis of the student’s experiences would help the nurses to understand and support the students. The outcome of the study could be used to design a better strategy for the mentors, so that problems could be discovered and helped at an early stage of time.

According to Hurtig and Stewin (1990), the results of the study could be used for suggestions on the nursing curricula. For example, new emphases for ‘death education’ could be discovered.

The researcher may also find out if students from different years of education altogether are suitable for a placement in palliative care, or if the placement should be restricted, e.g. for third-year-students only. A voluntary placement for interested students would also be possible.

1.5 Justification for the research approach to be used

Since the purpose of the study is to examine the experiences of student nurses in palliative care, a qualitative research method was chosen.

‘Qualitative research is usually conducted to explore problems about which relatively little is known’ (Morse & Field, 1997). Little is known about student nurses in palliative care, particularly in Germany where palliative care is still inadequate (Klaschik, 2001). Qualitative researchers collect and analyse data to generate a theory as outcome of their study (Morse & Field, 1997).

Qualitative research is ‘focused on human experience’ (Jackson, Daly & Chang, 2003, p. 140); it describes life experiences and gives them meaning (Burns & Grove, 1993). The phenomenon – in this study: the students’ experiences – may be studied holistically (Jackson, Daly & Chang, 2003, p. 141).

Qualitative researchers believe that the feelings and experiences of each person are likely to be different in some ways (Jackson, Daly & Chang, 2003, p. 142). Therefore each of the participants in this study would have different associations with palliative care, perhaps depending on former experiences with terminal-ill patients, whether as a student nurse or a friend or family member. Different knowledge of care should also be expected, as we get all students from the first clinical placement up to third-year-students, which is the last year in German nursing education.

To obtain the variety of experiences their participants express, qualitative researchers use observation and communication to collect narrative data (Burns & Grove, 1993), that results in rich, in-depth information (Polit & Hungler, 1997). The data are subjective, but this is regarded essential for the understanding of human experience (Burns & Grove, 1993). The author prefers semi-structured interviews for this study, as they are constructed to stimulate the participant to talk about a broad topic (Tham 2003).

1.6 Critique of research approach not being used

The author thinks of quantitative research as not suitable for the purpose of the study.

‘In quantitative research … knowledge from previous research … is organized into theory…this framework is then…systematically tested’ (Morse & Field, 1997). As mentioned above, there has been little previous research (Lloyd-Williams & Field, 2002). ‘There is nothing from which to create a theory and therefore nothing to test.’ (Morse & Field, 1997)

A criticism of the quantitative approach is that it is reductionist (Polit & Hungler, 1997), ‘it does not take account of a person’s individuality or a subjective human experience’ (Schneider, 2003, p. 274). According to Polit and Hungler (1997), quantitative research, when focusing on human beings, usually focus on a relatively small portion of human experiences. This study although should collect a broad range of information.

‘Quantitative research also requires the use of instruments or tools that will generate numerical data’ (Burns & Grove, 1993). Tools to measure psychological phenomena have not been developed so far (Polit & Hungler, 1997). It may be possible to design a close-end questionnaire with a fixed-response format, like a Likert Scale, but also those tools may miss important information (Elliot, 2003, p. 285). The best way to collect information for this study however seem to be unstructured or semi-structured interviews (Tham 2003).

Furthermore, quantitative researchers seek for generalization (Polit & Hungler, 1997). To make generalizations about nursing students in palliative care, a large amount of students would have to be examined. But to be feasible, the study may only involve ten to twelve student nurses from one educational institution.

As usual in qualitative research (Burns & Grove, 1993), the findings will be unique to the described situation. However, nursing students will definitely get in contact with terminally ill patients, though not always as massive as in a clearly stated palliative care unit. The outcome of the study may be useful in those situations (Burns & Grove, 1993).

2. Literature Review

2.1 Introduction

Copp (1994), in her literature review about a great number of studies related to palliative care, found out that the studies tended to focus on two perspectives:

- collecting data about nurses’ education in death and dying, and
- exploring nurses’ experiences in palliative care.

Despite the fact that research in palliative care often concerns more with nurses than with nursing students (e. g. Jocham 1997, Lehna 2003), three studies about undergraduate student nurses in particular were discovered. As they could also be split in the described way, the separation was taken over as a framework.

2.2 Review

2.2.1 Death education

Lloyd-Williamson and Field (2002) conducted a quantitative study of ‘death education’ for undergraduate degree and diploma nurses in the UK. They found out that while in the 1980s nurses received more training in palliative care than medical students did, it was now the other way round. The majority of senior lecturers asked in the study agreed with the importance of undergraduate palliative care education. However, difficulties like few placements in palliative care, lack of time or problems to find adequate teachers were mentioned.

Hurtig and Stewin (1990) tried to find out whether different approaches of death education would make a difference in students’ attitude towards death, or if personal experience of death, like the loss of a friend or family member, would be a more significant factor.

First-year nursing students without any clinical experiences were divided in one group receiving a didactical approach of death education, a second group for a more experimental way, and a control group.

Hurtig and Stewin described the didactical methods used as lectures, films and group discussion, dealing with issues like ‘death in our society’. In the experimental group, a more personal focus on death was taken, using death awareness exercises, music or drawing. The control group discussed adult development.

The results of the study asserted that students without any personal death experiences gained more profit from an experimental approach of education, while death-experienced students benefited more from a didactical death education. The authors argued that it could be useful to divide courses into different groups to meet all students’ needs.

2.2.3 Experiences with dying patients

Hjörleifsdóttir and Carter (2000) undertook a qualitative study about the experiences of twelve forth-year student nurses in communication with terminally ill patients. Although my study does not focus on communication in particular, the work of Hjörleifsdóttir and Carter comes close to my own ideas. Data was collected during semi-structured interviews, concerning factors related to feelings of security or insecurity, experiences of communication with patients and their families, factors influencing this communication and ways of preparing student nurses for palliative care.

The student nurses in the study expressed that they were inadequately informed about terminal ill and cancer patients, that misleading information made them feel insecure and that they were worried to give the patients wrong answers. The majority reported that dying patients and their families frequently questioned them, but that nurses never really told them what was going on. Being asked questions like ‘Am I dying?’ or ‘Do I have cancer?’ were described as a shocking experience. Students also pointed out that there was never enough time to talk to the patients, and some of them told that nurses who asked the students to do something else had interrupted their conversation with the patients.

The study highlights the importance of supporting students in palliative care, as two students explained very positive experiences after their mentor had encouraged them to talk to the patients.

The authors concluded that student nurses experience the same difficulties in communicating with terminal ill patients as qualified nurses do. They suggested that while most students described theoretical death education as useful, a better supervision during the clinical placement would be necessary.

2.3 Palliative care in Germany

Only one study about palliative care in Germany (Jocham 1997) was found. This is not surprising as there are still few German nursing researchers, and palliative care in Germany has just come up during the last decade (Klaschik 2001). During this national survey questionnaires were sent to 100 palliative care nurses to assess the demand for palliative nursing education in Germany.

Jocham (1997) found out that the majority of palliative care nurses’ feels to be trained inadequately. He suggested that the momentary educational resources for palliative care should be used well, and that more adequate courses are required. Although this study concerns with qualified nurses instead of students, it is mentioned here to show the momentary stage of palliative care research in Germany.

2.4 Conclusion

There has been little interest in research about nursing students in general, and no study about German student nurses in palliative care had been found. However, as palliative care will become more and more important (Klaschik 2002), research about death education for both nursing and medical students are urgently needed.

3. Ethical Feasibility of Study

When humans are used as study participants, it must be insured that their rights are protected (Polit & Hungler 1997). Especially when, like in this study, qualitative methods are chosen, it is very important to be aware of ethical issues (Jackson, Daly & Chang, 2003).

Various codes of ethics in the context of research have been developed (Polit & Hungler 1997). The most important in Europe are the Nuremberg Code, built up after the conviction of ideological motivated medicals who used inhuman research methods during the Nazi period ( (Polit & Hungler 1997, Baumgartner 1999), and the Declaration of Helsinki, developed in 1964 as a reaction on the thalidomide deformation epidemic (Baumgartner 1999).

In the USA, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research established the Belmont Report in 1978 (Polit & Hungler 1997, Baumgartner 1999). It articulated three primary ethical principles for the conduct of research: beneficence, respect for human dignity, and justice (Polit & Hungler 1997).

3.1 Principle of Beneficence

The term ‘beneficence’ comes from the Latin bene (meaning ‘well’ or ‘good’) and facere (meaning ‘to do’) (Johnstone 1999). The principle prescribes ‘above all, do good’ and is sometimes equated with the principle of non-maleficence which prescribes ‘above all, do no harm’ (Polit & Hungler 1997, Johnstone 1999). In the context of research, it also includes the freedom from exploitation (Polit & Hungler 1997).

3.1.1 Freedom From Harm

‘Harm’ of participants of research includes physical as well as psychological consequences (Polit & Hungler 1997). Ethical ‘researchers must take every precaution to protect people being studied from physical or mental harm or discomfort’ (Schneider 2003, p. 128).

Physical harm plays an important role in pharmacological research. Potential psychological harm is much more related to this kind of study, as the students will be asked about personal views and feelings. It is necessary to think carefully about the nature of the intrusion on the students’ sensivity before asking questions (Polit & Hungler 1997, O’Brien 2003).

Talking about distressing experiences may be identified as a therapeutic process (O’Brien 2003). However, emotional distress may arise and the researcher must consider how to handles these (O’Brien 2003).

The first thing to protect my participants from psychological damage would be to think carefully about the nature and the formulation of questions (Polit & Hungler 1997). Further, debriefing sections where the students could ask questions should be provided (Polit & Hungler 1997). Another possibility could be support by the psychologist or the parson of the hospital.

3.1.2 Freedom From Exploitation

The Oxford Advanced Learner’s Dictionary (4th ed. 1989) explains the verb ‘to exploit’ as follows:

‘To use (something) selfishly and unfairly for one’s own advantage or profit’.

Participants in research should be assured that being part in a study does not place them at a disadvantage. The information collected in a study should only be used for aims the participant knows of, and it must not be used against him in any way (Polit & Hungler 1997).

Freedom from exploitation is an important principle in this study, as the researcher is or was also the mentor and superior of the participants. The students’ statements may include grievances about nurses and doctors, patients or family members (either from the palliative care unit or other placements) or complaints about theoretical education. The students may fear that such expressions could be reported to other health professionals or the education centre.

Because the number of participants is typically small in qualitative research, it can be difficult to protect the identities of the participants (Polit & Hungler 1997). This study is no exception, as the number of participants will probably reach from ten to twelve student nurses

The students should trust the researcher that no such information will ‘leave the room’ and that the results of the study would be kept in confidence.

3.1.3 Risk / Benefit Ratio

The risk/benefit ratio means the proportion of the potential risks of the participants to their benefits, as well as to the benefit for the society (Polit & Hungler 1997). Researchers should assure that the degree of risk for the participant is as low as possible (Polit & Hungler 1997).

To evaluate the direct risk/benefit ratio, it has been suggested that researchers might consider how comfortable they would feel participating in the study (Polit & Hungler 1997). The degree of risk should never exceed the potential benefit (Polit & Hungler 1997).

Potential benefits for a student nurse who would take part in this study could be:

- Being able to discuss a very stressful subject
- Increased knowledge through self-reflection
- Escape from normal routine
- And satisfaction that the information may help others.

Neither the hospital nor the researcher could probably afford direct monetary benefit.

Potential risks in this study may include minimal consequences like loss of time or boredom, but also psychological distress due to the subject of the study. As mentioned under the principle “freedom from harm”, caution in formulating the questions and the possibility of further support should reduce that particular risk as much as possible.

3.2 Principle of the Respect of Human Dignity

This principle includes the right to self-determination and the right to full disclosure (Polit & Hungler 1997).

3.2.1 Right to self-determination

This principle means that participants have the right:

- To decide whether or not they take part in a study
- To terminate their participation at any time
- To refuse to give information
- And to ask questions about the study and its purpose. (Polit & Hungler 1997).

The principle involves freedom from coercion, which means that no pressure to take part in a study must be put on potential participants (Polit & Hungler 1997). Coercion could be a problem as the researcher, as a mentor, has some authority about the participants. Student nurses may feel an obligation to take part in a study carried out by their former mentor.

To fulfil the principle of self-determination, the participants must be assured that there is no duty to take part in the study and that there will be no negative consequences if they refuse their participation.

3.2.2 Right to Full Disclosure

Full disclosure means that the researcher has fully described:

- The nature of the study
- The participants’ rights to refuse the participation,
- The researcher’s responsibilities
- And the likely risks and benefits of the study, before the study has started (Polit & Hungler 1997).

Like in many qualitative studies (Polit & Hungler 1997), there may be a need for further disclosure at a later point of this study. Even if the nature of the study seems clear at the moment, new issues may arise during the collection of information. On the other hand, students may want to ask questions after their participation. The above-mentioned debriefing sessions could be a good way to deal with that.

3.2.3 Informed consent

The right to full disclosure and the right to self-determination perform the basis of the informed consent (Polit & Hungler, 1997).

Informed consent means that participants have adequate information, are capable of comprehending the information and have the free choice to participate voluntarily in a study (Polit & Hungler 1997). After getting proper information, the participant would usually sign a consent form where details of the study purpose, the specific expectations regarding participation, and the potential cost and benefits are mentioned.

In this study, the consent form should include

- that the purpose of the study is to collect information about what student nurses experienced while working in palliative care,
- that the results will hopefully help other students in the same situation as well as lecturers and mentors working with them,
- that the information would be collected during an interview but
- that the answers would not be given to anyone else and that anonymity would be provided, and last but not least
- that there would be no monetary benefit for the participation.

Like in some other qualitative studies (Polit & Hungler, 1997), it could be difficult to obtain a meaningful informed consent at the outset, as it is not clear how much the researcher will need for an interview. It would therefore be better to choose process consent, where the researcher continuously negotiates the consent (Polit & Hungler, 1997).

3.2.4 Vulnerable Groups

In this study the researcher is or was the mentor of the participants. Although a single mentor would have only little influence on the students’ career, this could be regarded as a dependent relationship (Jackson, Daly & Chang, 2003). The students belong to a vulnerable group (Jackson, Daly & Chang, 2003), and therefore their consent requires additional attention from the Institutional Ethics Committee (National Statement on Ethical Conduct in Research Involving Humans). This would be the duty of the Ethics Committee at my hospital.

As mentioned above, students may feel an obligation to take part in a research carried out by their former mentor. I must therefore ‘give an assurance that refusal to participate in, or a decision to withdraw from, the research will not result in any discrimination’ (National Statement on Ethical Conduct in Research Involving Humans). I already mentioned that point under 3.2.1 ‘Right to self-determination’.

3.3 Principle of Privacy

3.3.1 Right to privacy

A study participant can expect that any data collected will be kept in strict confidence (Polit & Hungler 1997). This can occur through anonymity, where even the researcher cannot link the participant to the data, or through other confidentiality procedures.

Anonymity would be possible in a data collection with questionnaires without any identifying information (Polit & Hungler 1997), but not in a qualitative study using interviews for data collection. According to Polit and Hungler (1997) anonymity in qualitative research is almost never possible. Therefore other confidentiality procedures would be needed (Polit & Hungler 1997).

These procedures must make clear that no participant could be identified by name, age, gender or any other information published. Adequate protection could still provide difficulties, as teachers or colleagues may try to find out who took part in the study.

3.4 Principle of Respect for Human Justice

3.4.1 Right to Fair Treatment

‘Participants have the right to fair and equitable treatment before, during and after their participation in the study’ (Polit & Hungler 1997, p. 137). This includes:

- That the selection of participants is based on research requirements and not on the conveniences or prejudices of the researcher
- That people who decline to participate or who withdraw from the study after their agreement are treated without prejudice
- That all agreements between researcher and participant are honoured
- That the participants can contact the researcher at any time to clarify information
- That participants have access to professional treatment in the case of physical or psychological damage
- That issues that arose during the study are clarified if necessary
- Sensitivity and respect for the beliefs, habits and lifestyles of the inhabitants
- Courteous and tactful treatment at all times.

(Source: Polit & Hungler 1997)

Most of these points have already been mentioned above in detail. Others, like sensitivity and respect for the belief of the nursing students, seem self-evident.

But it is a fact that ethical considerations have not always been given adequate attention (Polit & Hungler 1997), on purpose or by accident. It is clear that the institutional ethics committee of the University Hospital of Mannheim, where I work, must check my research proposal for its ethical aspects (Polit & Hungler 1997).

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