Article

Nursing Ethics
2016, Vol. 23(6) 636645
Ethical challenges: Trust and The Author(s) 2015
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leadership in dementia care 10.1177/0969733015580810
nej.sagepub.com

Rita Jakobsen and Venke Srlie

Lovisenberg Diaconal University College, Norway

Abstract
Introduction: To meet and take care of people with dementia implicate professional and moral challenges
for caregivers. Using force happens daily. However, staff also encounter challenges with the management
in the units. Managing the caretaking function is also significant in how caretakers experience working
in dementia care.
Purpose: The purpose of this study is to explore the caregivers experiences with ethical challenges
in dementia care settings and the significance of professional leadership in this context.
Method: The design is qualitative, and data appear through narrative interviews. A total of 23 caretakers
participated in the study. The transcribed interviews were subjected to a phenomenological-hermeneutical
interpretation.
Ethical considerations: The respondents signed an informed consent for participation prior to the
interviews. They were assured anonymity and confidentiality in the publication of the data. Ricoeurs
method for interpretation ensures anonymity as the researcher relates to the data as one collective
text. The study is part of a larger research project in ethics, in its entirety approved in line with the
Helsinki Convention.
Results: The findings show that the caretakers experienced inadequacy. Some of them described a negative
work atmosphere where they experienced that their leaders did not take them seriously. Because of this,
informal negative sub-groups functioned as an exclusive debriefing arena. Some of the informants described
the opposite experience where the leaders actively supported them.
Discussion: The analyses of the findings are discussed in light of the concepts of trust and mistrust in
leadership.
Conclusion: There is a correlation between the leadership and the caregivers experience of being in
difficult situations.

Keywords
Caregivers, dementia, experience, leadership, phenomenological-hermeneutical method, trust

Introduction
To be a professional caretaker means to work with vulnerable people who have limited abilities to take care
of themselves. People suffering from dementia are particularly vulnerable since their disease influences
their ability to make judgments, including their ability to make well-considered decisions. To meet and take

Corresponding author: Rita Jakobsen, Lovisenberg Diaconal University College, Lovisenberggt. 15b, Oslo 0456, Norway.
Email: Rita.jacobsen@ldh.no
Jakobsen and Srlie 637

care of these patients challenge the caretaker, professionally and morally.1 However, it is not just the encoun-
ter with patients that creates challenges. Managing the caregiving function also influences how caregivers
experience their work in dementia care.2 Several studies show that caregivers, in caring for older people, daily
experience ethical challenges that create demanding tasks in their everyday work.35
In a study by Jakobsen and Srlie, the caregivers daily experienced encountering difficult ethical situa-
tions related to the use of force. The caregivers experienced that it was painful and stressing to take moral
responsibility for these situations. Several studies confirm this.6,7 Moral challenges in healthcare are often
unpredictable. This reinforces the caregivers experience of frustration in their work.3,79 Work frustration
is always the result of requirements that are linked to work itself. They may also be defined as requirements
from the management and organization.810 Caregivers are also expected to master the challenges they
encounter in dementia care.4 These requirements are, however, not unequivocal. The caregivers often have
to choose between loyalty to the patient, to themselves, or to the management.11,12 Jakobsen1 confirms this
in her study. She found that caregivers felt they had to go against the work culture and the management in
order to deliver good care. Experiencing conflicting values daily not only creates frustrations. It also effects
the work culture negatively.6,8,1315 This is in line with Pauly et al.s study.16 They found that the role of the
leader had a significant influence on the ethical climate and created moral distress in the workplace. They
uncovered multiple factors that influenced perceptions of the ethical climate and the development of moral
distress, among others, the role of the leader.16 The complex nature of the work environment with increased
stress creates challenges for leaders in healthcare organizations.17

The purpose of the study

The purpose of this study is to explore the caregivers experiences with being in ethically difficult situations
in nursing homes and the significance of professional leadership in this context.

Method
The study builds on a qualitative design where data appear through narrative interviews. Lindseth and
Norbergs18 phenomenological-hermeneutical method for research on life experiences is chosen as the
method of interpretation. This method is previously used in several studies describing ethics and care
practice.13,1922

Participants
The informants working experience in dementia care ranged from 1 to 25 years. Although their education
varied and they had different functions in the nursing home, they all had direct contact with patients in their
daily work.

The narrative interview

The data consist of 23 transcribed interviews, lasting from 20 to 40 min, recorded and transcribed verbatim.
Told and interpreted narratives from peoples experiences are, according to Polkinghorne23 and Lindseth
and Nordberg,18 particularly suitable in accounting for life experiences, including experiences from work
with people. Work in nursing homes is about work with people where challenges and actions can be difficult
to formulate precisely. Narratives include more than answers to questions. They are when told, made expli-
cit and available for the surroundings where they may be interpreted in a broader context.24 The caregivers
experiences are valuable sources in illuminating ethical challenges in healthcare for older people and, in this
context, the significance of professional leadership.
638 Nursing Ethics 23(6)

Table 1. The informants positions.

Position Number

Auxiliary nurse 7
Nurse 6
Department head (3 nurses and 1 physiotherapist) 4
Student nurse 3
Physiotherapist 2
Social worker 1
Total 23

The interviews are individual, where just one open question is formulated which in its open form invites
to narrate:25

Tell me about your experiences with being in ethically difficult situations in the nursing home.

The advantage of one simple question is the few leads given by the interviewer and greater room for the
informant to focus on personal experiences. The interview situation gives the researcher the possibility to
take part in the experience of others by listening to their narratives and subsequently to analyze and interpret
the narratives in light of relevant theories. In this way, the study may contribute to developing a greater
understanding of the issue of discussion.22,26

Ethical considerations
The respondents signed an informed consent for participation prior to the interviews on the basis of both
verbal and written information. They were assured anonymity and confidentiality about adaption and pre-
sentation of the data and publication. Ricoeurs26 method for interpretation ensures anonymity as the
researcher relates to the data as one collective text. The study is part of a larger research project in ethics,
in its entirety approved in line with the Helsinki Convention.

Data analysis
In phenomenology, the central question concerns the meaning of lived experience of the phenomenon,
whereas hermeneutics deals with the texts meaning or sense and its reference. The phenomenological-
hermeneutical method of analysis was, therefore, considered appropriate to investigate the healthcare pro-
viders experience with ethically difficult situations in their work.22 In the analysis, the researchers relate to
the data material as one text.
The single question invites the informants to express themselves openly through their narratives. Hence,
it is up to them to define the situations that are ethically difficult.
The phenomenological-hermeneutical method26 has three steps:
1. The text is initially openly read and naively repeated in order to catch meanings. It is important to
understand the flow in text from what it says to what it implicitly talks about. The naive understand-
ing creates the foundation for the next phase.
2. In the structural analysis, the text is divided into units based on sentences or sections, reflecting the
substance that appears to the researcher through the first readings. In this phase, the texts units of
meanings are sorted in line with the purpose of the research for what appears to be a sub-theme and
Jakobsen and Srlie 639

what gradually is considered the main theme. An overview over the interpreted sub-themes and
themes will here constitute the findings in the study itself.
3. The last phase, where comprehensive understanding is the question, is a critical interpretation aim-
ing at a comprehensive understanding of the texts meaning.22 In the discussion, main phenomena
will, relevant for the purpose of this study, be considered in light of own experiences and relevant
theory in order to derive new understanding and insight.

Findings
The findings are thematized in sub-themes and themes as shown in Table 2. The themes constitute the head-
ings in the presentation of the findings.

Lack of openness
Overwhelming responsibility. The informants wished that they could speak more openly with their colleagues
and leaders. Statements like I dare not speak up. I speak up, but nobody listens. I see that mistakes are
made, but dare not speak up were frequent in the data. Lack of understanding among colleagues and lead-
ers was the most important reason for their powerlessness. Several of the informants expressed that this
affected their health. Not being able to give good enough care affected their conscience: The patients dig-
nity is threatened by lack of competence and lack of personnel on duty. Many are tired. The informants
express concern for the patients, but also for themselves. Stories were told about mistrusting colleagues.
They also told stories concerning their frustrations about having to bear the responsibility alone: I couldnt
take it anymore; I got a long term sick leave. The informants tell that their frustrations were not taken
seriously:

Frustrations are not to be talked about. I hit the wall and became powerless and unmotivated. When and how shall I
bring things up? I have to be brave and speak up again and again. I wish we had a more open and less defensive work
climate. But this really depends on the leaders attitude and her ability to follow-up on what we have agreed on.

Negative atmosphere
Some informants said I, whereas others said we. Where the care culture appears closed, the narratives
focus on I. This includes descriptions of very stressed units: There is a negative mood amongst the per-
sonnel. They are tired. The unit has a high frequency of sick leaves. The caretakers express resignation and
exhaustion, due to the lack of resources, competence, and leadership: We take out our frustration in the
duty room, in particular when the leader is absent. It is worse for the unskilled and the summer substitutes.

Table 2. Themes and sub-themes as a result of the structural analysis.

Themes Sub-themes

Lack of openness Overwhelming responsibility

Negative atmosphere
Mistrust Uncertainty
Failing leadership
Trust Support
Fellowship
640 Nursing Ethics 23(6)

They are not able to discuss their frustrations. The permanent employees have created their own arena for
problem solving. However, it is exclusive and not for everyone:

Little by little a divided culture has evolved where some staff members dont greet each other. Colleagues also
talk a lot about each other behind their backs. This creates tension in the work culture. We bring it up, but the
atmosphere is not good. Because of this, I prefer to work alone as much possible.

They talk about a culture characterized by mistrust and a demotivating atmosphere that drains staff physi-
cally and mentally.

Mistrust
Uncertainty. Several informants tell us that the leaders are vague and unclear about their standards for nur-
sing care. This creates uncertainty among the staff members because they are unsure of what the leaders
expect from them. The leaders rarely initiate conversations about their standards of nursing care and the
ethical challenges and priorities they have to struggle with.
The staff therefore experience that it is extremely difficult to voice their concerns about ethical dilemmas
in the unit: I often experience that unskilled employees address patients without respect. Unacceptable
behaviour is more difficult to correct than practical nursing skills. I dont know how to get through to the
leader about these problems.
The caregivers experience that the leaders give them too much responsibility. They frequently have to
deal with overwhelming situations on their own. Many caregivers experience that they are forced to deliver
conveyor belt care due to lack of time and resources. They experience that the leaders do not take their
concerns seriously when they try to talk with them about their frustrations. Hence, they lose faith in their
leaders:

It is extremely frustrating not to be listened to. One of our patients is very restless and shouts all the time. The
noise really affects other patients and personnel. We have tried to talk with our leader about this. But she just
answers that we have to learn to live with the commotion.

Failing leadership. The informants state that poor leadership creates disillusionment in the staff: It is all
about the leaders ability to enable staff cope with the units ethical challenges. People become exhausted
and frustrated when the leaders stick their heads in the sand. As an example, the leaders inability to pro-
vide enough skilled nurses on every shift creates resignation:

In the evenings in particular, it seems like the leaders take in anybody just to have enough staff on the shift.
Few skilled nurses diminish the quality of care. Relatives complain that the staff doesnt understand them. This is
reported to the leader. But they dont do anything about it. It seems like they only care about having enough staff
on the shifts, and dont care about their level of competency.

Trust
The informants also talk about good leadership contributing to a better handling of difficult ethical situa-
tions. Here, leaders are described as good role models in the unit.

Support. The leader sets the standard of care in the units: She often sets the agenda and makes room for
discussion. She clarifies expectations and oversees that work is done in accordance with the ethical values.
How the leader does this is described concretely. Knowledge is important:
Jakobsen and Srlie 641

The primary nurse is present in the dr.visitto speak directly about their patients. The leader takes part in situa-
tions to discuss and confirm choices so that she understands the problems better. This is important for us in order
to build competence.

When the caregivers experience supportive and open leadership, it means explicit expectations are being
followed up on a daily basis: Our job is to give the patients dignified care. This requires that the staff
knows what is expected and that the leader problematizes this when necessary. She is a good role model.
The leaders role is decisive for how the personnel experience particularly difficult situations: In very
difficult situations, we use external expertise. Henceforth the leader shows that she deals with the situation.

Fellowship. Nurses who trust their leaders often use we instead of I when they talk about managing
challenging situations:

We often start our duty discussing ethical problems. The units head nurse asks the personnel to describe difficult
situations so we can reach a consensus. We share our experiences and nobody is a winner or a looser. We have all
experienced difficult situations. We have a very open work environment, and appreciate discussing difficult
situations in the group. We can all learn from good as well as bad experiences.

The caregivers highlight the leader as a decisive factor in the work environment where unity is sensed as
being linked to providing good care: The caregivers varied backgrounds and resources must be utilized
to achieve good care. The leader is vital to achieve this.

Discussion
The findings show the caregivers experience inadequacy. They all experience ethically difficult situations
daily. They describe negative work atmosphere, where people do not greet each other. They also experience
that their leaders do not take them serious. There are tendencies to sub-cultures in the wards. However, the
criteria for being accepted are not explicitly defined. However, we have narratives about care cultures char-
acterized by a shared whole, where people share experiences and knowledge. In these cultures, the leader is
highlighted as a central role model who takes the staffs challenges seriously.
What makes these units so different? There seems to be a correlation between the staff lack of recogni-
tion, poor work climate, and negative sub-cultures.13,27 There also seems to be a correlation between good
leadership and open, supportive care cultures.
The caregivers tell about daily ethically difficult situations related to use of mild force. They are fru-
strated and risk becoming burnt-out due to these circumstances. Use of force in nursing homes is well docu-
mented.6,7 Several studies document that being in difficult situations makes the staff susceptible to burn
out,3,12 in particular where time is scarce in relation to the tasks, and they have to make difficult priori-
ties.69,12
The caregivers choice of action depends to a great extent on their competence, social and professional
support by leader, and operating conditions.9,10,17,2729 The findings in this study support this. Let us look at
the unit nurses role and significance based on these findings. The unit nurses position is the formal leader
position closest to care providing. This role is challenging in nursing homes for several reasons. The car-
egiving is extensive. The frames are limited and the caregivers have a varied competence to meet the
patients need.17,29
Nurses, physiotherapists, and other skilled health workers normally safeguard formal competence. The
particular challenge is, however, linked to the large number of unskilled employees. This group is to a larger
extent more dependent on routines and rules in their work than those with formal skills. They are therefore
more dependent on the professional of the care culture in the unit. This appears to be particularly challenging
642 Nursing Ethics 23(6)

related to care for people with dementia. The difficult situations related to dementia care require competence
beyond rules and regulations. Care culture and leadership through guidance and discussions must therefore
mirror correct standard.2,10,30
Leadership is about developing a work culture, where care is given in line with the patients and their
families individual needs.31 It goes without saying that a leader must trust that the staff members deliver
care in line with legislation, professional principles, and the institutions set of values.
Trust is a central idea in the findings. There are many definitions and reflections on the concept trust.
This indicates that the concept is difficult to define.30,32 With Lgstrup,33 trust is an expression of life and
thus vital between individuals. Under normal circumstances, human beings meet each other with natural
trust.34 Trust is threatened and turns into mistrust under abnormal circumstances. What is to be considered
normal and abnormal circumstances is learned through our life cycles. People develop sensitivity to trust
mistrust in relations. Lgstrup33 claims that trust between people is basic and therefore comes before mis-
trust. Grimen30 applies the term trust giver in his texts about trust. A trust giver leaves something to the
other, usually in good faith. What does this imply? Good faith may be understood as trusting the one who
is given authorities to be able to make reflected choices of action. Trust in good faith can be misused. The
trust giver, hence, takes a chance making himself or herself vulnerable.30 According to Luhmann,35 showing
trust is a gamble.
In this study, the term is actualized on several levels. The leader can be understood as a trust giver dele-
gating responsibility and decision power to the caregivers. The leader takes a chance by handing over
responsibility, trusting and expecting that this will be handled in the best possible way.9 When informants
experience that their leaders do not see or hear them, the condition of trust is challenged. How? Let us
answer with the following question: Can a leader misuse his or her role as trust giver? In organizations
where peoples lives and health are in question, leadership is about mobilization of common commitments
through interpersonal interaction.9 In this statement, the leader, the trust giver, is given an active role
through the terms mobilizing and interaction. Therefore, the leaders as trust givers bear the respon-
sibility, even when they delegate it, and trust that the caregivers will safeguard it. Hence, it is not just the
trust recipients who have power to choose how the given trust should be managed. Trust givers also have the
power to choose how to follow up their part of the responsibility.32 According to some of the nurses in this
study, it is reasonable to assume that misused trust becomes a disclaimer.27,30
When the care providers claim that they are not heard or seen despite extensive challenges in their work,
it is reasonable to call the leaders attitudes indifferent where trust at a certain point turns into mistrust.
According to Grimen,8,32 it is possible to understand this thinking as a leaders chosen position, conscious
or unconscious. They can defend their choices through the delegated responsibility. It is, therefore, reason-
able to characterize this choice as a kind of power display. Leaders can choose their position and action
toward care providers as care providers can do toward patients. The result of the leaders choices may
be perceived as mistrust. This may trigger other reactions in the work culture. As in this context, leaders,
trust givers, assign responsibility to the individual caregiver. The caregivers on the other hand experience
difficult situations in the unit and demand a distinct leader as advisor, coach, and role model. They need to
be seen and heard in their everyday challenges.9,17,27,29 It is possible to call this institutionalized mistrust. In
this case, the leadership leaves an extensive moral and professional responsibility to the caregivers without
dealing with the challenges that go with this responsibility and which qualifications the staff possesses to
safeguard this trust. The leaders so to speak hand over their responsibility, despite the consequences this
may cause for those given such trust and for the patients receiving the care this trust is about.9,27,35 To give
trust in care work is not about leaving total responsibility to the one receiving trust. It is also about actively
relating to this trust by, for instance, asking whether the person in question is worthy of this trust.9 Care-
givers frustrations and feelings of not being heard when they speak up indicates that the leaders do not
relate actively to the trust given. The caregivers say that it is important that leaders set the standards, act
Jakobsen and Srlie 643

as role models, and take frustrations seriously. When this is absent, it is possible to understand the care-
givers perception of the leader as indifferent and neglectful, a leader not trusted to resolve issues. Consis-
tent mistrust has a greater psychological cost than trust. Mistrust demands a much greater vigilance than
trust.30 The caregivers become exhausted since nothing helps. Is there possibly a connection between an
established negative sub-culture in a unit and lack of trust in the leader?
In the study, frustrations are handled in exclusive and informal sub-cultures. Not everybody in the units is
included, for instance, extra staff and students are excluded. When frustrations about lacking leadership take
a lot of attention, the informants talk about the group as a place for survival and is the reason why they
continue to work there. At the same time, there are other caregivers in this culture who define such a sub-
culture as very unfortunate for the work environment, and they consider leaving. Sub-cultures can be neg-
ative as well as positive for the work culture. They are positive because they create a sense of belonging and
identity. They are negative when they create exclusivity resulting in a split culture.13,27 In this study, it is
possible to see the sub-cultures as a way of dealing with perceived poor leadership. It may lead to survival
for some, whereas others use the term bad atmosphere, poor cooperation, as is the case where some col-
leagues do not greet each other. What is remarkable in the study is that where distrust was high in the units,
they are the ones characterized by poor atmosphere and creation of sub-cultures. This is in line with
Fukuyama13 who shows the correlation between mutual trust among employees and leaders and the degree
of job satisfaction. Other studies support this.9,16,17,27,29 The concept of trust is close to the concept of
respect.36 There seems to be a lack of respect for the moral challenges and the intensity of moral distress
in the working environment. This lack of respect is experienced between the leader and the caregivers,
as well as between the caregivers. There seems to be a correlation between the leaders lack of respect and
the caregivers experiences of moral distress and mistrust. This is in line with Pauly et al.16 who found a
correlation between moral stress intensity and perceptions of ethical climate, where leadership was found
to be significantly correlated to moral distress.
The data material also shows another side of trust and work culture. Some caretakers experience to be
seen and heard. A good leader, as seen by the caregivers, is thus one who acknowledges their difficult ethi-
cal situations and contributes through collective reflections in order to extend the room for action and form
the basis of decisions in similar situations.1,9,27 The good leadership demands acknowledgement and respect
for the challenges the care work creates. The leader uses the positive power in the leader position. It is about
normative power and persuasion.16,17,27,29,37 By being a role model, mastering the profession, expectations,
assessments, and choices of action become apparent for the staff. The leader is visible in the unit and con-
firms and challenges without threatening the trust given. With this approach, challenges appear as a collec-
tive responsibility, not individual. The challenges are ours, not mine. The cultural unity thus becomes a
united concern where the individual care provider experiences to belong, and where it is easier to relate
to the difficult ethical situations than when the leader appears to be indifferent. These results are supported
by the studies of Wong and Laschinger29 and Busch,36 which show that the more managers are seen as
authentic, by emphasizing transparency, balanced processing, self-awareness, and high ethical standards,
the more nurses perceive they have access to workplace empowerment structures, are satisfied with their
work, and report higher performance.

Summary
In dementia care where ethically difficult situations are experienced on a daily basis, it seems particularly
necessary to have a leader who creates trust by delegating responsibility and actively follow up the respon-
sibility given. The caregivers narratives bear witness to two different work cultures where the leaders role
turns out differently. Where trust between caregivers and leader is great, the culture seems to be able to meet
the ethically difficult situations. You find disharmonious cultures where the relationship between leaders
644 Nursing Ethics 23(6)

and care providers is characterized by distrust. Disharmonious cultures are characterized by stress and dis-
illusioned caregivers, where ethically difficult situations are heightened and individualized.

Methodological considerations
This study has a qualitative design, and it is not appropriate to discuss concepts of validity, reliability, and
generalizability in their traditional senses. The phenomenological-hermeneutical interpretation is about
lived experiences and will inextricably be linked to the interpreters interpretation. The informants have
been posed one open question. The results have been gleaned through the interpretation of the transcribed
narratives. They can be used to illustrate the meaning of lived experience and influence people in how they
perceive their lives, in this case around trust and leadership in nursing homes. Thus, it is possible to say that
this is not about documenting the truth but rather to present experiences the way the informants tell them
based on their understanding and how the interpreter perceives it, based on his or her understanding. Accu-
racy in interpretation is, therefore, important in deriving knowledge from the material. Loyalty to the nar-
ratives is essential in the reflections. Further studies are recommended around trust, leadership, and
healthcare.

Conflict of interest
The author declares that there is no conflict of interest.

Funding
This research received no specific grant from any funding agency in the public, commercial, or not-
for-profit sectors.

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