Original Manuscript
The significance of small things for dignity in psychiatric care
Nursing Ethics 1–11 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014551376 nej.sagepub.com
Frode Skorpen Stord/Haugesund University College, Norway
Arne Rehnsfeldt Stord/Haugesund University College, Norway
Arlene Arstad Thorsen University of Stavanger, Norway
Abstract Background: This study is based on the ontological assumption about human interdependence, and also on earlier research, which has shown that patients in psychiatric hospitals and their relatives experience suffering and indignity. Aim: The aim of this study is to explore the experience of patients and relatives regarding respect for dignity following admission to a psychiatric unit. Research design: The methodological approach is a phenomenological hermeneutic method. Participants and research context: This study is based on qualitative interviews conducted with six patients at a psychiatric hospital and five relatives of patients who experienced psychosis. Ethical consideration: Permission was given by the Regional Committee for Medical Research Ethics in Western Norway, the Norwegian Data Protection Agency and all wards within the hospital in which the patients were interviewed. Findings: The analysis revealed one main theme: ‘The significance of small things for experiencing dignity’ and four subthemes described as follows - ‘to be conscious of small things’, ‘being conscious of what one says’, ‘being met’ and ‘to be aware of personal chemistry’. Discussion and conclusion: Staff members seem not to give enough attention to the importance of these small things. Staff members need to explore this phenomenon systematically and expand their own understanding of it. Keywords Care, dignity, interdependence, patients, psychosis, relatives, small things
Introduction The importance of being cared for as fellow humans in vulnerable situations is, according to Løgstrup,1 based on ontological interdependence and could be described as an ethical demand. Rehnsfeldt and Eriksson2 argue that due to interdependence people create meaning in communion,
Corresponding author: Frode Skorpen, Karolinska Institutet, Campus Huddinge, Alfred Nobels Alle´ 23, Stockholm 171 77, Sweden. Email: [email protected]
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
2
Nursing Ethics
something which may lead to an increased understanding of life and an alleviation of suffering. The ultimate goal of caregiving is to bring the human being back to his or her mission in life, and caregivers who do not meet the expectations of patient and relatives regarding care increase their suffering.3 According to Saunders,4 it is well documented that severe mental illness affects not only the suffering human being but also his or her family and friends. By using a Q-methodological approach, researchers have studied patients’ and relatives’ experiences regarding how the dignity of patients is observed at psychiatric hospitals.5,6 Based on this empirical pre-understanding and also the ontological assumptions about human interdependence,1 in this study we explore whether there are some common experiences regarding dignity in relation to professional mental health services expressed by both patients and relatives of patients. A semantic analysis by Edlund et al.7 shows that dignity can be understood as nobility, rank, being, condition, behaviour, vocation, mission in life, position, becoming, decency, composure, dignity, poise and pride. In accordance to Edlund et al.7 (p. 854) ‘there is a clear relationship to one of caring science’s basic assumptions’ that absolute dignity as a unique position given to human beings includes the obligation to serve their fellow human beings. Nordenfelt8 describes human dignity as menschenwu¨rde. Dignity can also be described as something relative. Edlund et al.7 (p. 854) state that relative dignity is about ‘an inner ethical stance [that] confers awareness of one’s own and others’ dignity’ and ‘external dignity’ or ‘aesthetic conducts that exhibit dignity in action’. Nordenfelt8 establishes these categories of relative dignity, which is as follows: dignity as merit, dignity as moral stature and the dignity of identity. Løgstrup1 describes the difference between making ethical decisions in extremely severe situations and in normal situations. In extremely severe situations, the silent, radical, ethical demand gives human beings no choice: they must act even though it may even cost their lives. In normal situations, humans want to be accommodating and helpful except that it should not cost them anything even if the right actions probably would have a positive effect.1 Travelbee9 describes the process of human reduction when a suffering person is not seen as a suffering human being, but as a task.9
Earlier research An evaluation of the Royal College of Nursing’s dignity campaign shows that dignity is not only the responsibility of professionals but also everybody’s responsibility. They also report the importance of taking the small things seriously and acknowledge that the small things are what make the difference.10 Dignity is also about details, such as how to offer an older woman from a certain social class tea or coffee in a cup with a saucer.11 Relatives of older people in Scandinavia describe a caring culture which takes care of the patient’s dignity by creating a sense of at-home-ness, allowing the resident to feel safe at once upon arrival at a nursing home. Dignity is also experienced when nursing staff do the little extra or the small things such as offering relatives a cup of coffee.12 Former cancer patients claim that caregivers offering ‘the little extra’ promoted their dignity and made them feel valued.13 Patients14 in a psychiatric setting, and also relatives to patients in a psychiatric setting,15 experience a sense of dignity when they encounter competent and committed staff members who treat them as individuals, attempt to understand them and help them reduce the shame. Dignity is also about confirmation such as being heard, being seen as a unique person and being taken seriously.14,15 A pat on the shoulder could also be experienced as confirmation.14 To restore dignity among patients with vast experience of drug addiction, being cared for with love and being heard are essential for them to be able to create new meaning in their lives.16 Such care fosters a sense of dignity that grows out of a caring and confirming relationship, which makes them able to view themselves from a new perspective.16 2
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
3
For users of mental healthcare service, it is important being recognised as human beings, and it is essential that staff members sometimes show and share something of themselves. Participants do not experience being recognised on their own terms, even if professionals do their best.17 Caregivers in psychiatric care preserve their patients’ dignity when they have the courage to be present, allow themselves to be touched by the patients’ stories and recognise the unspoken wishes to be heard, as well as meeting their patients’ expressed needs.18 Compassion needs to be more than good intentions. Staff members who communicate compassion without taking patients’ signals seriously abuse their power and this can result in violating patients’ dignity.19 Rejection caused by inadequate staffing, which makes it impossible for nurses to live up to their professional ideals, can lead to staff members developing a negative professional understanding of themselves, which can also result in reduced dignity for their patients.20 For patients, being cared for with dignity is being respected and treated in accordance with ordinary social norms – this could involve something as simple as how one is greeted by the reception staff at a hospital.21 Some patients with psychosis experience dignity when they are treated as equal human beings and others experience dignity despite suffering. Some patients have negative experiences such as suffering due to feeling inferior and others have to fight for their own dignity.5 Being a psychiatric patient can be seen as a struggle for dignity in the face of discrimination and rejection. Care can be seen as a light in the darkness when patients experience being treated as normal human beings.22 Living with major depression in family life can be described as a battle between dignity and suffering, and dignity has to be constantly restored for both oneself and ones family before being able to have a focus outside the family.23 Family members of patients with schizophrenia or other psychotic illnesses view openness, confirmation, cooperation and continuity as important facets of the staff members’ approach. Confirmation may be interpreted as being approached with dignity, being heard and being recognised and valued.24 Some relatives reported patients being cared for with dignity as a result of a value-based care. Some relatives communicated expectations, such as that they want to be more involved in patient care. Other relatives reported asymmetry in the relationship between patients and staff. Some relatives had a nuanced view, they found that staff took patients’ opinions seriously but these relatives also acknowledged that sometimes medication and use of force was necessary for patient care.6 Among nurses in psychiatric forensic care, observing patients’ dignity is seen as protecting the patients, respecting the patients, doing the little extra, walking the extra steps for the patients and respecting their human equality.25 When staff at a psychiatric hospital were asked about taking care of patients’ dignity, some staff focussed on that all human beings are unique and equal but also vulnerable. Other staff focussed on the challenges they encountered while maintaining patients’ dignity.26
Aim The aim of this study is to explore the experiences of patients and relatives in terms of whether there are some common experiences regarding how the dignity of patients is taken care of when they are admitted to psychiatric hospitals.
Participants This qualitative study is based on interviews conducted with six patients at a psychiatric hospital and five relatives of patients with a mental illness. There was no link between the patients and the relatives who participated. All relatives were parents. For more information about participant’s background, see Table 1. The main inclusion criterion for patients was that they had to have experienced being psychotic on at least one 3
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
4
Nursing Ethics
Table 1. Participant’s demographic background variables.
1 2 3 4 5 6 7 8 9 10 11
Participant
Gender
Age, years (range)
Patient Patient Patient Patient Patient Patient Relatives Relatives Relatives Relatives Relatives
Male Male Male Male Male Female Male Female Female Female Female
30–39 30–39 40–49 50–59 50–59 20–29 60–70 60–70 50–59 50–59 60–70
occasion. The main inclusion criterion for relatives was that the patients to whom they were related had to have experienced psychosis one or more times. Patients were recruited through head nurses and relatives through head nurses or contact persons in a user organisation contacted by a head nurse. Two relatives – father and mother to one patient – wanted to be together when the interview was conducted. All interviews were tape-recorded, lasted from 50 to 150 min and transcribed verbatim, with the exception of two interviews that were written down. In total, there were 131 pages of text. All interviews were included in the analysis, but quotations are from the tape-recorded interviews.
Ethical considerations Permission was given by the Regional Committee for Medical Research Ethics in Western Norway (reg. no. 2008/13776 CAG), the Norwegian Data Protection Agency (reg. no. 20522/2) and all wards within the psychiatric hospital in which the patients were interviewed. Verbal and written information was given to all participants about the voluntary nature of their participation and their right to withdraw from participation at any time without having to provide any explanation. Written consent was obtained from all participants. Background information from participants and their written consent were stored separately to ensure confidentiality. Information about birth date and home address was not requested.
Methodological approach The methodological approach is a phenomenological hermeneutic method,27 which was chosen because it gives us the opportunity to increase understanding of the phenomenon of how dignity is upheld in mental healthcare. The method is intended to help gain an insight into the meaning of the interviewees’ lived experiences.27 Situations, attitudes, relationships and all the other factors that influence their experiences can be considered. Transcription of interviews was the initial step, followed by formulating a broad understanding of the text(s). The next phase was to divide the text into condensed meaning units. These condensed meaning units were then formed into subthemes and one main theme. The main theme and its subthemes were then compared to the naive understanding. This process was repeated several times through a hermeneutic process in order to capture the essence of the phenomenon. Finally, the main theme together with subthemes were interpreted as a whole, and a review of the available literature was then performed in order broaden understanding. This literature was then integrated into the discussion. 4
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
5
Naive understanding The experience of patients and relatives regarding the care given to patients’ dignity while they are at a hospital is to a large extent related to how they are confirmed and taken care of by staff members. Both patients and staff members mentioned situations which could be described as ‘ordinary’ and small daily things. Small things can be a matter of nuances in terms of how the participants in this study are cared for as persons. Being cared for appropriately confirms patients as unique persons. It also recognises them as patients in their situation, but at the same time acknowledges them as more than patients. The participants also emphasised to what degree staff members are aware of how important ordinary daily activities are for their patients’ sense of dignity. Two temporary questions arise after reading the interviews: (a) What do these small things mean for patients’ and relatives’ experiences of dignity? and (b) Why are staff members not aware of the importance of these small things?
Structured analysis Patients’ and relatives’ experiences regarding what is important for patients’ dignity can be understood on the basis of one theme consisting of four subthemes. The theme is the significance of small things for experiencing dignity. The text derived from the interviews indicates that for patients and relatives a sense of dignity is related to different nuances and qualities apparent in the behaviour of staff members towards patients and relatives in what could be described as ordinary things (Table 2). In the following presentation, subthemes would be presented. To be conscious of small things. This subtheme is about ordinary episodes or small things that patients and their families feel are associated with staff members’ behaviour towards them. They experience that staff members do not always show that they care for the patients. For relatives, minor things such as being offered something to eat or a cup of coffee are small things which matter a lot. One patient said that it was difficult to explain the small things, but that they were related to the need for staff members to ‘behave decently . . . [and] not do anything negative; just be normal’ (Patient 4). One relative commented on the small things in this way, yes, it is these small things I think that they [staff members] have forgotten – these small details that need to be put together like a puzzle. You cannot put together just a frame, you know; you need to find out what to put inside the frame . . . , if one sees it metaphorically. (Relative 3)
One example of being aware of small things involves the degree to which staff members are aware of protecting patients’ confidentiality. This could be shown by staff members’ consciousness of details such as removing their identification tags when patients and staff members are out of the hospital. As one patient explains, sometimes when we go shopping I and another [patient] on the ward ask [staff members] if they can put the [identification] tags into their pockets somehow . . . , and they put them in their pockets, and that’s at least a little better, but we do not always remember it and neither do they, and then suddenly we notice them. (Patient 1)
Being aware of small things is also about details in the way staff members organise walks outside the hospital, and there is a huge difference between walking in pairs of one patient and one staff member and walking in a group of patients and staff members. Part of the experience of dignity related to small things is about the degree to which staff members are conscious of the way in which they meet patients and relatives. Relatives share various experiences and 5
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
6
Nursing Ethics
Table 2. Examples of structured analysis (theme: ‘the significance of small things [the staff member] for experiencing dignity’). Meaning units
Condensed meaning units
Subtheme
‘Yes, it is these small things I think that they [staff members] have forgotten – these small details that need to be put together like a puzzle. You cannot put together just a frame, you know; you need to find out what to put inside the frame . . . , if one sees it metaphorically’. (Relative 3) ‘And there is someone [a staff member] who claims that it is like people are being stored, and where is one’s dignity when they [staff members] use the word ‘‘stored’’?’. (Patient 3) ‘I say no, I will not have anything; [despite that] they go and fetch it [something to eat] . . . and then make me eat it . . . , and in the long term it helps’. (Patient 5) ‘Healthcare services should be aware that ‘‘personal chemistry’’ [between staff members and patients] does not match every time, and thus they have to be prepared to find different staff [when necessary]’. (Relative 2)
It is important to be aware that the To be conscious of small things small things are part of something larger.
By using words such as ‘people are being stored’, staff members neglect patients’ dignity.
Being conscious of what one says
Patients can mean the opposite of what they say.
Being met
Staff members need to be aware that To be aware of ‘personal ‘personal chemistry’ between chemistry’ patients and staff members does not always match.
stress the importance of staff members being conscious about how they are sitting in the corridor when relatives come to visit their loved ones. Some staff members do not take notice of relatives, but ignore them instead, and they do not present themselves as people with names. ‘Some staff members have very good routines and others do not’ (Relative 2). The importance of staff members being conscious of meeting relatives appropriately and recognising them as individuals was reported by one relative: when you ring the doorbell and they come out, then they know who you are . . . ‘Oh hey, we shall look after how she [the patient] is’, [they might say]. It costs exactly the same time [effort] as when they’re sitting there [without doing anything] and they seem scared. (Relative 3)
Having caregivers who are conscious of such details is also important for patients, as one of them made clear: ‘it is important for me just that you [a staff member] say good morning’ (Patient 3). Patients reacted negatively if staff members did not observe such courtesies. Being conscious of what one says. This is also of importance. One patient explained that ‘there is someone [a staff member] who claims that it is like people are being stored, and where is one’s dignity when they [staff members] use the word ‘‘stored’’?’ (Patient 3). Staff members do not need to say much, but what they do say is important, as one relative emphasises:
when I was going to visit [the patient], she [a staff member] was so accommodating. She [the staff member] did not say many words – only ‘it was nice that you came’ and the words ‘she [the patient] is waiting for you’ – but she was so accommodating . . . She [the staff member] was human, as she should be. (Relative 3)
Another relative describes something similar and says that it is not many words that are required, but only short sentences such as ‘and you are [patient’s name] mother’ (Relative 1), so which words one uses makes a huge difference for relatives. 6
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
7
Being met. Being met in a dignified way can involve patients’ experiences of being understood by staff members who will sit down with a patient, hold the patient’s hand and care about the patient. It can also involve situations in which a patient says that he or she does not need anything from staff members and rejects what they are offering despite the fact that what is offered is what the patient requires. One patient describes a situation in which a staff asked if he wanted something to eat: ‘I say no, I will not have anything; [despite that] they go and fetch it [something to eat] . . . and then make me eat it . . . , and in the long term it helps’ (Patient 5). Being met can also mean that staff members act naturally towards patients, as one patient noted: ‘I am not a fragile person with whom they need to be careful. I can withstand a lot, so it’s [up to staff members] to be themselves and not perform a role’ (Patient 5). This subtheme also concerns staff members listening to the patients’ views, such as wishes to adjust medication, even if the adjustments turn out in the long run not to be positive for the patient. Another situation that highlights the importance of being heard was brought up by a patient who, along with fellow patients, made staff members aware of the fact that the hospital’s car they usually used for outings had the hospital’s logo on it. The logo was removed from the car, and the patient described it as ‘a wonderful experience being taken seriously and heard’ (Patient 1). For relatives, being met can involve the experience of staff members’ seeing the patient as a whole human being and not only as an ill person. One relative related her joy when this happened: ‘there was a lady [staff member] who said ‘‘you have such a handsome, wonderful son.’’ Oh God, so lovely it was when she saw my son and saw how handsome [and] nice [he is] because he is very nice’ (Relative 1). Not being met is experienced by patients and relatives in various ways. For patients it can involve not being seen as a suffering human being, as one patient suggested: ‘it has something to do with dignity . . . You are not seen as a patient; you are only someone who’s there . . . You are not heard’ (Patient 3). Problems are also created when staff members take what patients say to them too literally and accept a no as a no without considering the clinical observations which could have told them that the patients actually needed assistance. One patient claimed that when this happened it would have been better for him if staff members had not looked after him at all, because such an experience made him feel worse as a patient. Not being met can also result from the focus of staff members being more task oriented, with an emphasis on getting things done, than patient oriented, with an emphasis on what the individual patient needs. One patient described it as being on a conveyor belt and explained the feeling in this way: mostly they [staff members] are very likeable but there are times when you feel a bit . . . , a bit forced somehow and then you feel that your dignity is not being taken care of . . . They use force . . . , like today when I should have been eating dinner; then I felt they [staff members] nagged very much . . . You do not get enough time to do what you should [eat a meal]. (Patient 3)
Patients report that they have to fight to get time with staff members when needed. Specific episodes such as those with staff members who do not respond to patients’ requests are described. For example, a patient may want to talk with staff members but is told to wait, even when the patient feels/thinks that staff members have time to talk with him or her. One patient thought that ‘they should take time for it. I wonder sometimes if there is something which I have done since they do not want to talk to me’ (Patient 3). Both patients and relatives believed that they spent too little time talking with their physicians and they recalled that physicians had more time for them years ago. Patients also describe situations in which they experienced staff members who do not handle the situations: for example, when a patient asks for something to eat and staff members cannot accommodate the patient’s request. One patient in a vulnerable position highlights the problem: ‘when you are depressed, you are afraid to bother people too much; afraid that they [staff members] will be angry with you’ (Patient 5). 7
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
8
Nursing Ethics
Not being treated with dignity also concerns the extent to which staff members talk to patients as equals and do not speak from the top down. One relative claimed that although staff members did not ‘think’ they were speaking in a condescending manner, they definitely were. The quality of the relationship between patients and staff members is also vital, as one patient indicates, as a whole, they [staff members] are nice but as I think about it, they seem to be very superficial. It is a bit like this: if you do as you are told to do, then it is okay, [but] if you do not, then it is not okay. (Patient 2)
Being aware of ‘personal chemistry’. The degree to which staff members pay attention to and are aware of what both patients and relatives describe as personal chemistry is also essential to the preservation of patient dignity. Personal chemistry is an important factor when one is suffering. Patients say that they do not like everyone working in the department, and one claims ‘that there is someone with whom I thrive’ (Patient 4). Patients also report that it takes very little for staff members to show that they care, but for some staff members, being with patients seems to be no more than a job. Individual adjustments can be important in allowing patients to decide which staff member they want to be together with, even if they as patients know that for staff members it could be difficult to meet such a request. Also, relatives emphasise how important it is that staff members be aware of the chemistry between themselves and their patients. One relative pointed out that ‘healthcare services should be aware that ‘‘personal chemistry’’ [between staff members and patients] does not match every time, and thus they have to be prepared to find different staff’ when necessary (Relative 2). Another relative used as an example of the importance of personal chemistry saying that even if it was decided that something was to be done at one time, it was sometimes better to do it later with another staff member if the patient so wished. Relatives experienced that staff members were not always aware of such small things.
Interpreted whole and discussion Calling the main theme of this study ‘The Significance of Small Things for Experiencing Dignity’ is a means of trying to summarise the essence of the structured analysis. Both patients and relatives refer to specific details or normal activities as being aspects of their experience of dignity. ‘Small things’ are only to some degree discussed in earlier research.10–12,25 The importance of small things can be seen in light of Løgstrup’s1 ethics and the reason for ethics is that we as human beings are always present in situations, which is why ethical situations arise.1 Trust, openness of speech, mercy and love are sovereign expressions of life; something universal belonging to all human beings.1 For example, we treat people with trust until they give us cause not to do so. Using the notion of chaos theory, and the idea that movement of butterfly wings in one part of the world can cause a major weather event on the other side of the planet,28 Wiklund Gustin and Wagner29 discussed how understanding of how small, moments of compassionate care can make a huge difference another time. Awareness of these small ‘incidents’ and the importance of staff being present in such situations with patients and relatives can also be understood in the context of the ‘butterfly wings’ metaphor.28 The hypothesis suggested by these subthemes, however, is that the experience of dignity on the part of patients and relatives lies in these details, and what can be described as small things are among the most important things for human beings. Similar results, emphasising the importance of the small things, were found in an evaluation of the Royal College of Nursing’s dignity campaign,10 and among patients in a psychiatric hospital.25 It is tempting to view the idiom ‘God is in the details’ figuratively in order to highlight the importance of focusing on these small things. As stated, similar phenomena have been identified in previous studies in elderly care,12 somatic care13 and psychiatric healthcare,25,27 but there have been described as ‘the little 8
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
9
extra’. One might ask what the ‘extra’ is in the little extra? Maybe the little extra is something patients and relatives are longing for deep down in the patient–relative–staff relationship. When it comes to both the little extra15,16 and the small things,13 is it in the patient’s and relatives’ relationship(s) with other human beings – in this context with staff members – that ethical situations arise? Staff members can reinforce patients’ self-identity as being human beings and help restore their dignity,17 but staff members can also choose not to take notice of these small things and not to listen to patients and relatives. If staff are unwilling to respond to the ethical demands1 with which they are presented, that is, the need to take care of one’s fellow human beings, this may result in increased suffering and loss of dignity for patients and relatives.1,3 One patient describes how important it was that staff members saw him as a whole person and not only as a patient. Another patient talks about the importance of being recognised as a patient. One relative described what a good feeling it was to realise that staff members saw the human being (the patient) behind all the symptoms. All these situations can be about being, about being seen and being confirmed as human beings. How one views oneself is important for one’s experience of dignity and has both an internal and an external source.7,8 An external source of dignity for patients may be how they perceive others’ perception of them. As found in earlier studies, being treated as individuals,14,15 being treated with love and being heard19 are important for patients’ sense of dignity. External conditions and inner self-understanding mutually influence each other. It is possible to see this in light of ‘the importance of small things for the experience of dignity’. Growth or change in any person’s inner self-understanding can only take place as a process in the individual, but other people may facilitate this growth. It is worth reflecting on why some staff members are not aware of these small things since earlier studies have shown that staff who share something of themselves17 are touched by patients’ stories,18 express human equality26 promote patient dignity. One way of understanding why respecting patient dignity is challenging for staff is that it is a means by which the staff cope with the complex demands of caring for patients at psychiatric hospitals. Small things, so important for patients and relatives, can for staff members be a part of normal situations and perceived as nothing other than minor aspects of their daily work. What staff experience as a minor issue (the flap of butterfly wings, metaphorically speaking) can be a major event for the patient or their relatives (a tornado). For patients and relatives, however, one might assume that being in a psychiatric hospital is a uniquely severe situation, of which suffering is an expected component. Staff members do not always respond to the ethical demands of taking care of patients and relatives as suffering human beings and do not want to be distracted from their routines. ‘There are no limits to our ‘‘goodness’’’, Løgstrup1 claims, ‘except that it must not cost us anything’ (p. 163). In a study by Skorpen et al.,26 some staff members described how they tried to manage their own reaction to patients’ suffering by not involving themselves too much with each unique patient. According to Travelbee,9 this may be a means by which staff protect themselves from becoming part of the suffering of these unique human beings by reducing them to the categories of patients or relatives. One part of being a professional healthcare staff member is to have knowledge about and be aware of these processes.
Methodological considerations In qualitative research, such as in this study, the question about validity and reliability is something different than when doing quantitative research. In qualitative research, the question is about to what degree the researchers are rigorous and thoughtful in all parts of the research process. Interview situation and interpretation of the results with the participants could be influenced of the researchers’ pre-understanding both in the interview situation and when analysis narratives. To what degree it is possible to put aside own preunderstanding, so-called bracketing27 can be discussed, but consciousness of these challenges was present when interviewing the participants and constituting the subthemes and themes. As described by Lindseth and Norberg,27 the aim with phenomenological hermeneutics method is to disclose truths about the essential 9
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
10
Nursing Ethics
meanings in the world, but that what is found in our interpretation of the text is not the only meaning. In qualitative research, like in this study, the meaning is to disclose new meaning and increase understanding of the topic studied.
Conclusion and relevance for clinical practice Both patients and relatives of patients describe how small things can increase and decrease their experiences of dignity. Situations that for patients and relatives can be understood as extraordinary situations can for healthcare staff members be ordinary situations. This could be the reason why staff members do not pay enough attention to these small things, and this situation could, in turn, result in reduced dignity and increased suffering for patients and relatives. It is the responsibility of healthcare staff to be aware of the importance of these small things to patients’ and relatives’ experience of dignity. All staff members need to take a critical and systematic view of how they as caregivers treat patients and relatives with regard to these small things. Staff members also need to explore and expand their own understanding of why situations, which are extraordinary for patients, seem to be ordinary situations for staff members. Conflict of interest The authors declare 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. References 1. Løgstrup KE. The ethical demand. Notre Dame, IL: University of Notre Dame Press, 1997. 2. Rehnsfeldt A and Eriksson K. The progression of suffering implies alleviated suffering. Scand J Caring Sci 2004; 18(3): 264–272. 3. Eriksson K, Olsson KA, Peterson CI, et al. The suffering human being. Chicago, IL: Nordic Studies Press, 2006. 4. Saunders JC. Families living with severe mental illness: a literature review. Issues Ment Health Nurs 2003; 24(2): 175–198. 5. Skorpen F, Thorsen AA, Forsberg C, et al. Suffering related to dignity among patients at a psychiatric hospital. Nurs Ethics 2013; 19(3): 357–358. 6. Skorpen F. Subjective experiences of dignity within mental health care. PhD Thesis, Stockholm: Karolinska Institutet, 2014. 7. Edlund M, Lindwall L, von Post I, et al. Concept determination of human dignity. Nurs Ethics 2013; 20(8): 851–860. 8. Nordenfelt L. The varieties of dignity. Health Care Anal 2004; 12(2): 69–81; discussion 83–89. 9. Travelbee J. Interpersonal aspects of nursing. Oslo: Pensumtjeneste, 1996. 10. Baillie L and Gallagher A. Evaluation of the Royal College of Nursing’s ‘Dignity: at the heart of everything we do’ campaign: exploring challenges and enablers. J Res Nurs 2010; 15(1): 15–28. 11. Gallagher A, Li S, Wainwright P, et al. Dignity in the care of older people – a review of the theoretical and empirical literature. BMC Nurs 2008; 7: 11. 12. Rehnsfeldt A, Lindwall L, Lohne V, et al. The meaning of dignity in nursing home care as seen by relatives. Nurs Ethics. 2014; 21(5): 507–517. 13. Arman M and Rehnsfeldt A. The ‘little extra’ that alleviates suffering. Nurs Ethics 2007; 14(3): 372–386. 14. Schro¨der A, Ahlstro¨m G and Larsson BW. Patients’ perceptions of the concept of the quality of care in the psychiatric setting: a phenomenographic study. J Clin Nurs 2006; 15(1): 93–102. 10
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
11
15. Schro¨der A, Larsson BW and Ahlstro¨m G. Next of kin’s conceptions of the quality of care in the psychiatric setting: a phenomenographic study. Int J Ment Health Nurs 2007; 16(5): 307–317. 16. Wiklund L. Existential aspects of living with addiction – part II: caring needs. A hermeneutic expansion of qualitative findings. J Clin Nurs 2008; 17(18): 2435–2443. ˚ , Sundfør B, Karlsson B, et al. Recognition as a valued human being: perspectives of mental health ser17. Eriksen KA vice users. Nurs Ethics 2012; 19(3): 357–368. 18. Lindwall L, Boussaid L, Kulzer S, et al. Patient dignity in psychiatric nursing practice. J Psychiatr Ment Health Nurs 2012; 19(7): 569–576. 19. Hem MH and Heggen K. Is compassion essential to nursing practice? Contemp Nurse 2004; 17(1–2): 19–31. 20. Hem MH and Heggen K. Rejection – a neglected phenomenon in psychiatric nursing. J Psychiatr Ment Health Nurs 2004; 11(1): 55–63. 21. Bramesfeld A, Klippel U, Seidel G, et al. How do patients expect the mental health service system to act? Testing the WHO responsiveness concept for its appropriateness in mental health care. Soc Sci Med 2007; 65(5): 880–889. 22. Lilja L and Hellzen O. Former patients’ experience of psychiatric care: a qualitative investigation. Int J Ment Health Nurs 2008; 17(4): 279–286. 23. Ahlstro¨m B, Ska¨rsa¨ter I and Danielson E. The meaning of major depression in family life: the viewpoint of the ill parent. J Clin Nurs 2010; 19(1–2): 284–293. 24. Ewertzon M, Andershed B, Svensson E, et al. Family member’s expectation of the psychiatric healthcare professionals’ approach towards them. J Psychiatr Ment Health Nurs 2011; 18(2): 146–157. ˚ and Lindwall L. Respecting dignity in forensic care: the challenge faced by nurses of 25. Gustafsson L-K, Wigerblad A maintaining patient dignity in clinical caring situations. J Psychiatr Ment Health Nurs 2011; 20(1): 1–8. 26. Skorpen F, Thorsen AA, Ra˚holm MB, et al. Caring with dignity – a Q-methodological study of staff members’ experiences in a psychiatric context. Operant Subj 2013; 36(1): 1–24. 27. Lindseth A and Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci 2004; 18(2): 145–153. 28. Hilborn RC. Sea gulls, butterflies, and grasshoppers: a brief history of the butterfly effect in nonlinear dynamics. Am J Phys 2004; 72: 425–427. 29. Wiklund Gustin L and Wagner L. The butterfly effect of caring – clinical nursing teachers’ understanding of self-compassion as a source to compassionate care. Scand J Caring Sci 2013; 27(1): 175–183.
11
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
The significance of small things for dignity in psychiatric care
Nursing Ethics 1–11 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014551376 nej.sagepub.com
Frode Skorpen Stord/Haugesund University College, Norway
Arne Rehnsfeldt Stord/Haugesund University College, Norway
Arlene Arstad Thorsen University of Stavanger, Norway
Abstract Background: This study is based on the ontological assumption about human interdependence, and also on earlier research, which has shown that patients in psychiatric hospitals and their relatives experience suffering and indignity. Aim: The aim of this study is to explore the experience of patients and relatives regarding respect for dignity following admission to a psychiatric unit. Research design: The methodological approach is a phenomenological hermeneutic method. Participants and research context: This study is based on qualitative interviews conducted with six patients at a psychiatric hospital and five relatives of patients who experienced psychosis. Ethical consideration: Permission was given by the Regional Committee for Medical Research Ethics in Western Norway, the Norwegian Data Protection Agency and all wards within the hospital in which the patients were interviewed. Findings: The analysis revealed one main theme: ‘The significance of small things for experiencing dignity’ and four subthemes described as follows - ‘to be conscious of small things’, ‘being conscious of what one says’, ‘being met’ and ‘to be aware of personal chemistry’. Discussion and conclusion: Staff members seem not to give enough attention to the importance of these small things. Staff members need to explore this phenomenon systematically and expand their own understanding of it. Keywords Care, dignity, interdependence, patients, psychosis, relatives, small things
Introduction The importance of being cared for as fellow humans in vulnerable situations is, according to Løgstrup,1 based on ontological interdependence and could be described as an ethical demand. Rehnsfeldt and Eriksson2 argue that due to interdependence people create meaning in communion,
Corresponding author: Frode Skorpen, Karolinska Institutet, Campus Huddinge, Alfred Nobels Alle´ 23, Stockholm 171 77, Sweden. Email: [email protected]
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
2
Nursing Ethics
something which may lead to an increased understanding of life and an alleviation of suffering. The ultimate goal of caregiving is to bring the human being back to his or her mission in life, and caregivers who do not meet the expectations of patient and relatives regarding care increase their suffering.3 According to Saunders,4 it is well documented that severe mental illness affects not only the suffering human being but also his or her family and friends. By using a Q-methodological approach, researchers have studied patients’ and relatives’ experiences regarding how the dignity of patients is observed at psychiatric hospitals.5,6 Based on this empirical pre-understanding and also the ontological assumptions about human interdependence,1 in this study we explore whether there are some common experiences regarding dignity in relation to professional mental health services expressed by both patients and relatives of patients. A semantic analysis by Edlund et al.7 shows that dignity can be understood as nobility, rank, being, condition, behaviour, vocation, mission in life, position, becoming, decency, composure, dignity, poise and pride. In accordance to Edlund et al.7 (p. 854) ‘there is a clear relationship to one of caring science’s basic assumptions’ that absolute dignity as a unique position given to human beings includes the obligation to serve their fellow human beings. Nordenfelt8 describes human dignity as menschenwu¨rde. Dignity can also be described as something relative. Edlund et al.7 (p. 854) state that relative dignity is about ‘an inner ethical stance [that] confers awareness of one’s own and others’ dignity’ and ‘external dignity’ or ‘aesthetic conducts that exhibit dignity in action’. Nordenfelt8 establishes these categories of relative dignity, which is as follows: dignity as merit, dignity as moral stature and the dignity of identity. Løgstrup1 describes the difference between making ethical decisions in extremely severe situations and in normal situations. In extremely severe situations, the silent, radical, ethical demand gives human beings no choice: they must act even though it may even cost their lives. In normal situations, humans want to be accommodating and helpful except that it should not cost them anything even if the right actions probably would have a positive effect.1 Travelbee9 describes the process of human reduction when a suffering person is not seen as a suffering human being, but as a task.9
Earlier research An evaluation of the Royal College of Nursing’s dignity campaign shows that dignity is not only the responsibility of professionals but also everybody’s responsibility. They also report the importance of taking the small things seriously and acknowledge that the small things are what make the difference.10 Dignity is also about details, such as how to offer an older woman from a certain social class tea or coffee in a cup with a saucer.11 Relatives of older people in Scandinavia describe a caring culture which takes care of the patient’s dignity by creating a sense of at-home-ness, allowing the resident to feel safe at once upon arrival at a nursing home. Dignity is also experienced when nursing staff do the little extra or the small things such as offering relatives a cup of coffee.12 Former cancer patients claim that caregivers offering ‘the little extra’ promoted their dignity and made them feel valued.13 Patients14 in a psychiatric setting, and also relatives to patients in a psychiatric setting,15 experience a sense of dignity when they encounter competent and committed staff members who treat them as individuals, attempt to understand them and help them reduce the shame. Dignity is also about confirmation such as being heard, being seen as a unique person and being taken seriously.14,15 A pat on the shoulder could also be experienced as confirmation.14 To restore dignity among patients with vast experience of drug addiction, being cared for with love and being heard are essential for them to be able to create new meaning in their lives.16 Such care fosters a sense of dignity that grows out of a caring and confirming relationship, which makes them able to view themselves from a new perspective.16 2
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
3
For users of mental healthcare service, it is important being recognised as human beings, and it is essential that staff members sometimes show and share something of themselves. Participants do not experience being recognised on their own terms, even if professionals do their best.17 Caregivers in psychiatric care preserve their patients’ dignity when they have the courage to be present, allow themselves to be touched by the patients’ stories and recognise the unspoken wishes to be heard, as well as meeting their patients’ expressed needs.18 Compassion needs to be more than good intentions. Staff members who communicate compassion without taking patients’ signals seriously abuse their power and this can result in violating patients’ dignity.19 Rejection caused by inadequate staffing, which makes it impossible for nurses to live up to their professional ideals, can lead to staff members developing a negative professional understanding of themselves, which can also result in reduced dignity for their patients.20 For patients, being cared for with dignity is being respected and treated in accordance with ordinary social norms – this could involve something as simple as how one is greeted by the reception staff at a hospital.21 Some patients with psychosis experience dignity when they are treated as equal human beings and others experience dignity despite suffering. Some patients have negative experiences such as suffering due to feeling inferior and others have to fight for their own dignity.5 Being a psychiatric patient can be seen as a struggle for dignity in the face of discrimination and rejection. Care can be seen as a light in the darkness when patients experience being treated as normal human beings.22 Living with major depression in family life can be described as a battle between dignity and suffering, and dignity has to be constantly restored for both oneself and ones family before being able to have a focus outside the family.23 Family members of patients with schizophrenia or other psychotic illnesses view openness, confirmation, cooperation and continuity as important facets of the staff members’ approach. Confirmation may be interpreted as being approached with dignity, being heard and being recognised and valued.24 Some relatives reported patients being cared for with dignity as a result of a value-based care. Some relatives communicated expectations, such as that they want to be more involved in patient care. Other relatives reported asymmetry in the relationship between patients and staff. Some relatives had a nuanced view, they found that staff took patients’ opinions seriously but these relatives also acknowledged that sometimes medication and use of force was necessary for patient care.6 Among nurses in psychiatric forensic care, observing patients’ dignity is seen as protecting the patients, respecting the patients, doing the little extra, walking the extra steps for the patients and respecting their human equality.25 When staff at a psychiatric hospital were asked about taking care of patients’ dignity, some staff focussed on that all human beings are unique and equal but also vulnerable. Other staff focussed on the challenges they encountered while maintaining patients’ dignity.26
Aim The aim of this study is to explore the experiences of patients and relatives in terms of whether there are some common experiences regarding how the dignity of patients is taken care of when they are admitted to psychiatric hospitals.
Participants This qualitative study is based on interviews conducted with six patients at a psychiatric hospital and five relatives of patients with a mental illness. There was no link between the patients and the relatives who participated. All relatives were parents. For more information about participant’s background, see Table 1. The main inclusion criterion for patients was that they had to have experienced being psychotic on at least one 3
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
4
Nursing Ethics
Table 1. Participant’s demographic background variables.
1 2 3 4 5 6 7 8 9 10 11
Participant
Gender
Age, years (range)
Patient Patient Patient Patient Patient Patient Relatives Relatives Relatives Relatives Relatives
Male Male Male Male Male Female Male Female Female Female Female
30–39 30–39 40–49 50–59 50–59 20–29 60–70 60–70 50–59 50–59 60–70
occasion. The main inclusion criterion for relatives was that the patients to whom they were related had to have experienced psychosis one or more times. Patients were recruited through head nurses and relatives through head nurses or contact persons in a user organisation contacted by a head nurse. Two relatives – father and mother to one patient – wanted to be together when the interview was conducted. All interviews were tape-recorded, lasted from 50 to 150 min and transcribed verbatim, with the exception of two interviews that were written down. In total, there were 131 pages of text. All interviews were included in the analysis, but quotations are from the tape-recorded interviews.
Ethical considerations Permission was given by the Regional Committee for Medical Research Ethics in Western Norway (reg. no. 2008/13776 CAG), the Norwegian Data Protection Agency (reg. no. 20522/2) and all wards within the psychiatric hospital in which the patients were interviewed. Verbal and written information was given to all participants about the voluntary nature of their participation and their right to withdraw from participation at any time without having to provide any explanation. Written consent was obtained from all participants. Background information from participants and their written consent were stored separately to ensure confidentiality. Information about birth date and home address was not requested.
Methodological approach The methodological approach is a phenomenological hermeneutic method,27 which was chosen because it gives us the opportunity to increase understanding of the phenomenon of how dignity is upheld in mental healthcare. The method is intended to help gain an insight into the meaning of the interviewees’ lived experiences.27 Situations, attitudes, relationships and all the other factors that influence their experiences can be considered. Transcription of interviews was the initial step, followed by formulating a broad understanding of the text(s). The next phase was to divide the text into condensed meaning units. These condensed meaning units were then formed into subthemes and one main theme. The main theme and its subthemes were then compared to the naive understanding. This process was repeated several times through a hermeneutic process in order to capture the essence of the phenomenon. Finally, the main theme together with subthemes were interpreted as a whole, and a review of the available literature was then performed in order broaden understanding. This literature was then integrated into the discussion. 4
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
5
Naive understanding The experience of patients and relatives regarding the care given to patients’ dignity while they are at a hospital is to a large extent related to how they are confirmed and taken care of by staff members. Both patients and staff members mentioned situations which could be described as ‘ordinary’ and small daily things. Small things can be a matter of nuances in terms of how the participants in this study are cared for as persons. Being cared for appropriately confirms patients as unique persons. It also recognises them as patients in their situation, but at the same time acknowledges them as more than patients. The participants also emphasised to what degree staff members are aware of how important ordinary daily activities are for their patients’ sense of dignity. Two temporary questions arise after reading the interviews: (a) What do these small things mean for patients’ and relatives’ experiences of dignity? and (b) Why are staff members not aware of the importance of these small things?
Structured analysis Patients’ and relatives’ experiences regarding what is important for patients’ dignity can be understood on the basis of one theme consisting of four subthemes. The theme is the significance of small things for experiencing dignity. The text derived from the interviews indicates that for patients and relatives a sense of dignity is related to different nuances and qualities apparent in the behaviour of staff members towards patients and relatives in what could be described as ordinary things (Table 2). In the following presentation, subthemes would be presented. To be conscious of small things. This subtheme is about ordinary episodes or small things that patients and their families feel are associated with staff members’ behaviour towards them. They experience that staff members do not always show that they care for the patients. For relatives, minor things such as being offered something to eat or a cup of coffee are small things which matter a lot. One patient said that it was difficult to explain the small things, but that they were related to the need for staff members to ‘behave decently . . . [and] not do anything negative; just be normal’ (Patient 4). One relative commented on the small things in this way, yes, it is these small things I think that they [staff members] have forgotten – these small details that need to be put together like a puzzle. You cannot put together just a frame, you know; you need to find out what to put inside the frame . . . , if one sees it metaphorically. (Relative 3)
One example of being aware of small things involves the degree to which staff members are aware of protecting patients’ confidentiality. This could be shown by staff members’ consciousness of details such as removing their identification tags when patients and staff members are out of the hospital. As one patient explains, sometimes when we go shopping I and another [patient] on the ward ask [staff members] if they can put the [identification] tags into their pockets somehow . . . , and they put them in their pockets, and that’s at least a little better, but we do not always remember it and neither do they, and then suddenly we notice them. (Patient 1)
Being aware of small things is also about details in the way staff members organise walks outside the hospital, and there is a huge difference between walking in pairs of one patient and one staff member and walking in a group of patients and staff members. Part of the experience of dignity related to small things is about the degree to which staff members are conscious of the way in which they meet patients and relatives. Relatives share various experiences and 5
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
6
Nursing Ethics
Table 2. Examples of structured analysis (theme: ‘the significance of small things [the staff member] for experiencing dignity’). Meaning units
Condensed meaning units
Subtheme
‘Yes, it is these small things I think that they [staff members] have forgotten – these small details that need to be put together like a puzzle. You cannot put together just a frame, you know; you need to find out what to put inside the frame . . . , if one sees it metaphorically’. (Relative 3) ‘And there is someone [a staff member] who claims that it is like people are being stored, and where is one’s dignity when they [staff members] use the word ‘‘stored’’?’. (Patient 3) ‘I say no, I will not have anything; [despite that] they go and fetch it [something to eat] . . . and then make me eat it . . . , and in the long term it helps’. (Patient 5) ‘Healthcare services should be aware that ‘‘personal chemistry’’ [between staff members and patients] does not match every time, and thus they have to be prepared to find different staff [when necessary]’. (Relative 2)
It is important to be aware that the To be conscious of small things small things are part of something larger.
By using words such as ‘people are being stored’, staff members neglect patients’ dignity.
Being conscious of what one says
Patients can mean the opposite of what they say.
Being met
Staff members need to be aware that To be aware of ‘personal ‘personal chemistry’ between chemistry’ patients and staff members does not always match.
stress the importance of staff members being conscious about how they are sitting in the corridor when relatives come to visit their loved ones. Some staff members do not take notice of relatives, but ignore them instead, and they do not present themselves as people with names. ‘Some staff members have very good routines and others do not’ (Relative 2). The importance of staff members being conscious of meeting relatives appropriately and recognising them as individuals was reported by one relative: when you ring the doorbell and they come out, then they know who you are . . . ‘Oh hey, we shall look after how she [the patient] is’, [they might say]. It costs exactly the same time [effort] as when they’re sitting there [without doing anything] and they seem scared. (Relative 3)
Having caregivers who are conscious of such details is also important for patients, as one of them made clear: ‘it is important for me just that you [a staff member] say good morning’ (Patient 3). Patients reacted negatively if staff members did not observe such courtesies. Being conscious of what one says. This is also of importance. One patient explained that ‘there is someone [a staff member] who claims that it is like people are being stored, and where is one’s dignity when they [staff members] use the word ‘‘stored’’?’ (Patient 3). Staff members do not need to say much, but what they do say is important, as one relative emphasises:
when I was going to visit [the patient], she [a staff member] was so accommodating. She [the staff member] did not say many words – only ‘it was nice that you came’ and the words ‘she [the patient] is waiting for you’ – but she was so accommodating . . . She [the staff member] was human, as she should be. (Relative 3)
Another relative describes something similar and says that it is not many words that are required, but only short sentences such as ‘and you are [patient’s name] mother’ (Relative 1), so which words one uses makes a huge difference for relatives. 6
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
7
Being met. Being met in a dignified way can involve patients’ experiences of being understood by staff members who will sit down with a patient, hold the patient’s hand and care about the patient. It can also involve situations in which a patient says that he or she does not need anything from staff members and rejects what they are offering despite the fact that what is offered is what the patient requires. One patient describes a situation in which a staff asked if he wanted something to eat: ‘I say no, I will not have anything; [despite that] they go and fetch it [something to eat] . . . and then make me eat it . . . , and in the long term it helps’ (Patient 5). Being met can also mean that staff members act naturally towards patients, as one patient noted: ‘I am not a fragile person with whom they need to be careful. I can withstand a lot, so it’s [up to staff members] to be themselves and not perform a role’ (Patient 5). This subtheme also concerns staff members listening to the patients’ views, such as wishes to adjust medication, even if the adjustments turn out in the long run not to be positive for the patient. Another situation that highlights the importance of being heard was brought up by a patient who, along with fellow patients, made staff members aware of the fact that the hospital’s car they usually used for outings had the hospital’s logo on it. The logo was removed from the car, and the patient described it as ‘a wonderful experience being taken seriously and heard’ (Patient 1). For relatives, being met can involve the experience of staff members’ seeing the patient as a whole human being and not only as an ill person. One relative related her joy when this happened: ‘there was a lady [staff member] who said ‘‘you have such a handsome, wonderful son.’’ Oh God, so lovely it was when she saw my son and saw how handsome [and] nice [he is] because he is very nice’ (Relative 1). Not being met is experienced by patients and relatives in various ways. For patients it can involve not being seen as a suffering human being, as one patient suggested: ‘it has something to do with dignity . . . You are not seen as a patient; you are only someone who’s there . . . You are not heard’ (Patient 3). Problems are also created when staff members take what patients say to them too literally and accept a no as a no without considering the clinical observations which could have told them that the patients actually needed assistance. One patient claimed that when this happened it would have been better for him if staff members had not looked after him at all, because such an experience made him feel worse as a patient. Not being met can also result from the focus of staff members being more task oriented, with an emphasis on getting things done, than patient oriented, with an emphasis on what the individual patient needs. One patient described it as being on a conveyor belt and explained the feeling in this way: mostly they [staff members] are very likeable but there are times when you feel a bit . . . , a bit forced somehow and then you feel that your dignity is not being taken care of . . . They use force . . . , like today when I should have been eating dinner; then I felt they [staff members] nagged very much . . . You do not get enough time to do what you should [eat a meal]. (Patient 3)
Patients report that they have to fight to get time with staff members when needed. Specific episodes such as those with staff members who do not respond to patients’ requests are described. For example, a patient may want to talk with staff members but is told to wait, even when the patient feels/thinks that staff members have time to talk with him or her. One patient thought that ‘they should take time for it. I wonder sometimes if there is something which I have done since they do not want to talk to me’ (Patient 3). Both patients and relatives believed that they spent too little time talking with their physicians and they recalled that physicians had more time for them years ago. Patients also describe situations in which they experienced staff members who do not handle the situations: for example, when a patient asks for something to eat and staff members cannot accommodate the patient’s request. One patient in a vulnerable position highlights the problem: ‘when you are depressed, you are afraid to bother people too much; afraid that they [staff members] will be angry with you’ (Patient 5). 7
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
8
Nursing Ethics
Not being treated with dignity also concerns the extent to which staff members talk to patients as equals and do not speak from the top down. One relative claimed that although staff members did not ‘think’ they were speaking in a condescending manner, they definitely were. The quality of the relationship between patients and staff members is also vital, as one patient indicates, as a whole, they [staff members] are nice but as I think about it, they seem to be very superficial. It is a bit like this: if you do as you are told to do, then it is okay, [but] if you do not, then it is not okay. (Patient 2)
Being aware of ‘personal chemistry’. The degree to which staff members pay attention to and are aware of what both patients and relatives describe as personal chemistry is also essential to the preservation of patient dignity. Personal chemistry is an important factor when one is suffering. Patients say that they do not like everyone working in the department, and one claims ‘that there is someone with whom I thrive’ (Patient 4). Patients also report that it takes very little for staff members to show that they care, but for some staff members, being with patients seems to be no more than a job. Individual adjustments can be important in allowing patients to decide which staff member they want to be together with, even if they as patients know that for staff members it could be difficult to meet such a request. Also, relatives emphasise how important it is that staff members be aware of the chemistry between themselves and their patients. One relative pointed out that ‘healthcare services should be aware that ‘‘personal chemistry’’ [between staff members and patients] does not match every time, and thus they have to be prepared to find different staff’ when necessary (Relative 2). Another relative used as an example of the importance of personal chemistry saying that even if it was decided that something was to be done at one time, it was sometimes better to do it later with another staff member if the patient so wished. Relatives experienced that staff members were not always aware of such small things.
Interpreted whole and discussion Calling the main theme of this study ‘The Significance of Small Things for Experiencing Dignity’ is a means of trying to summarise the essence of the structured analysis. Both patients and relatives refer to specific details or normal activities as being aspects of their experience of dignity. ‘Small things’ are only to some degree discussed in earlier research.10–12,25 The importance of small things can be seen in light of Løgstrup’s1 ethics and the reason for ethics is that we as human beings are always present in situations, which is why ethical situations arise.1 Trust, openness of speech, mercy and love are sovereign expressions of life; something universal belonging to all human beings.1 For example, we treat people with trust until they give us cause not to do so. Using the notion of chaos theory, and the idea that movement of butterfly wings in one part of the world can cause a major weather event on the other side of the planet,28 Wiklund Gustin and Wagner29 discussed how understanding of how small, moments of compassionate care can make a huge difference another time. Awareness of these small ‘incidents’ and the importance of staff being present in such situations with patients and relatives can also be understood in the context of the ‘butterfly wings’ metaphor.28 The hypothesis suggested by these subthemes, however, is that the experience of dignity on the part of patients and relatives lies in these details, and what can be described as small things are among the most important things for human beings. Similar results, emphasising the importance of the small things, were found in an evaluation of the Royal College of Nursing’s dignity campaign,10 and among patients in a psychiatric hospital.25 It is tempting to view the idiom ‘God is in the details’ figuratively in order to highlight the importance of focusing on these small things. As stated, similar phenomena have been identified in previous studies in elderly care,12 somatic care13 and psychiatric healthcare,25,27 but there have been described as ‘the little 8
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
9
extra’. One might ask what the ‘extra’ is in the little extra? Maybe the little extra is something patients and relatives are longing for deep down in the patient–relative–staff relationship. When it comes to both the little extra15,16 and the small things,13 is it in the patient’s and relatives’ relationship(s) with other human beings – in this context with staff members – that ethical situations arise? Staff members can reinforce patients’ self-identity as being human beings and help restore their dignity,17 but staff members can also choose not to take notice of these small things and not to listen to patients and relatives. If staff are unwilling to respond to the ethical demands1 with which they are presented, that is, the need to take care of one’s fellow human beings, this may result in increased suffering and loss of dignity for patients and relatives.1,3 One patient describes how important it was that staff members saw him as a whole person and not only as a patient. Another patient talks about the importance of being recognised as a patient. One relative described what a good feeling it was to realise that staff members saw the human being (the patient) behind all the symptoms. All these situations can be about being, about being seen and being confirmed as human beings. How one views oneself is important for one’s experience of dignity and has both an internal and an external source.7,8 An external source of dignity for patients may be how they perceive others’ perception of them. As found in earlier studies, being treated as individuals,14,15 being treated with love and being heard19 are important for patients’ sense of dignity. External conditions and inner self-understanding mutually influence each other. It is possible to see this in light of ‘the importance of small things for the experience of dignity’. Growth or change in any person’s inner self-understanding can only take place as a process in the individual, but other people may facilitate this growth. It is worth reflecting on why some staff members are not aware of these small things since earlier studies have shown that staff who share something of themselves17 are touched by patients’ stories,18 express human equality26 promote patient dignity. One way of understanding why respecting patient dignity is challenging for staff is that it is a means by which the staff cope with the complex demands of caring for patients at psychiatric hospitals. Small things, so important for patients and relatives, can for staff members be a part of normal situations and perceived as nothing other than minor aspects of their daily work. What staff experience as a minor issue (the flap of butterfly wings, metaphorically speaking) can be a major event for the patient or their relatives (a tornado). For patients and relatives, however, one might assume that being in a psychiatric hospital is a uniquely severe situation, of which suffering is an expected component. Staff members do not always respond to the ethical demands of taking care of patients and relatives as suffering human beings and do not want to be distracted from their routines. ‘There are no limits to our ‘‘goodness’’’, Løgstrup1 claims, ‘except that it must not cost us anything’ (p. 163). In a study by Skorpen et al.,26 some staff members described how they tried to manage their own reaction to patients’ suffering by not involving themselves too much with each unique patient. According to Travelbee,9 this may be a means by which staff protect themselves from becoming part of the suffering of these unique human beings by reducing them to the categories of patients or relatives. One part of being a professional healthcare staff member is to have knowledge about and be aware of these processes.
Methodological considerations In qualitative research, such as in this study, the question about validity and reliability is something different than when doing quantitative research. In qualitative research, the question is about to what degree the researchers are rigorous and thoughtful in all parts of the research process. Interview situation and interpretation of the results with the participants could be influenced of the researchers’ pre-understanding both in the interview situation and when analysis narratives. To what degree it is possible to put aside own preunderstanding, so-called bracketing27 can be discussed, but consciousness of these challenges was present when interviewing the participants and constituting the subthemes and themes. As described by Lindseth and Norberg,27 the aim with phenomenological hermeneutics method is to disclose truths about the essential 9
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
10
Nursing Ethics
meanings in the world, but that what is found in our interpretation of the text is not the only meaning. In qualitative research, like in this study, the meaning is to disclose new meaning and increase understanding of the topic studied.
Conclusion and relevance for clinical practice Both patients and relatives of patients describe how small things can increase and decrease their experiences of dignity. Situations that for patients and relatives can be understood as extraordinary situations can for healthcare staff members be ordinary situations. This could be the reason why staff members do not pay enough attention to these small things, and this situation could, in turn, result in reduced dignity and increased suffering for patients and relatives. It is the responsibility of healthcare staff to be aware of the importance of these small things to patients’ and relatives’ experience of dignity. All staff members need to take a critical and systematic view of how they as caregivers treat patients and relatives with regard to these small things. Staff members also need to explore and expand their own understanding of why situations, which are extraordinary for patients, seem to be ordinary situations for staff members. Conflict of interest The authors declare 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. References 1. Løgstrup KE. The ethical demand. Notre Dame, IL: University of Notre Dame Press, 1997. 2. Rehnsfeldt A and Eriksson K. The progression of suffering implies alleviated suffering. Scand J Caring Sci 2004; 18(3): 264–272. 3. Eriksson K, Olsson KA, Peterson CI, et al. The suffering human being. Chicago, IL: Nordic Studies Press, 2006. 4. Saunders JC. Families living with severe mental illness: a literature review. Issues Ment Health Nurs 2003; 24(2): 175–198. 5. Skorpen F, Thorsen AA, Forsberg C, et al. Suffering related to dignity among patients at a psychiatric hospital. Nurs Ethics 2013; 19(3): 357–358. 6. Skorpen F. Subjective experiences of dignity within mental health care. PhD Thesis, Stockholm: Karolinska Institutet, 2014. 7. Edlund M, Lindwall L, von Post I, et al. Concept determination of human dignity. Nurs Ethics 2013; 20(8): 851–860. 8. Nordenfelt L. The varieties of dignity. Health Care Anal 2004; 12(2): 69–81; discussion 83–89. 9. Travelbee J. Interpersonal aspects of nursing. Oslo: Pensumtjeneste, 1996. 10. Baillie L and Gallagher A. Evaluation of the Royal College of Nursing’s ‘Dignity: at the heart of everything we do’ campaign: exploring challenges and enablers. J Res Nurs 2010; 15(1): 15–28. 11. Gallagher A, Li S, Wainwright P, et al. Dignity in the care of older people – a review of the theoretical and empirical literature. BMC Nurs 2008; 7: 11. 12. Rehnsfeldt A, Lindwall L, Lohne V, et al. The meaning of dignity in nursing home care as seen by relatives. Nurs Ethics. 2014; 21(5): 507–517. 13. Arman M and Rehnsfeldt A. The ‘little extra’ that alleviates suffering. Nurs Ethics 2007; 14(3): 372–386. 14. Schro¨der A, Ahlstro¨m G and Larsson BW. Patients’ perceptions of the concept of the quality of care in the psychiatric setting: a phenomenographic study. J Clin Nurs 2006; 15(1): 93–102. 10
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
Skorpen et al.
11
15. Schro¨der A, Larsson BW and Ahlstro¨m G. Next of kin’s conceptions of the quality of care in the psychiatric setting: a phenomenographic study. Int J Ment Health Nurs 2007; 16(5): 307–317. 16. Wiklund L. Existential aspects of living with addiction – part II: caring needs. A hermeneutic expansion of qualitative findings. J Clin Nurs 2008; 17(18): 2435–2443. ˚ , Sundfør B, Karlsson B, et al. Recognition as a valued human being: perspectives of mental health ser17. Eriksen KA vice users. Nurs Ethics 2012; 19(3): 357–368. 18. Lindwall L, Boussaid L, Kulzer S, et al. Patient dignity in psychiatric nursing practice. J Psychiatr Ment Health Nurs 2012; 19(7): 569–576. 19. Hem MH and Heggen K. Is compassion essential to nursing practice? Contemp Nurse 2004; 17(1–2): 19–31. 20. Hem MH and Heggen K. Rejection – a neglected phenomenon in psychiatric nursing. J Psychiatr Ment Health Nurs 2004; 11(1): 55–63. 21. Bramesfeld A, Klippel U, Seidel G, et al. How do patients expect the mental health service system to act? Testing the WHO responsiveness concept for its appropriateness in mental health care. Soc Sci Med 2007; 65(5): 880–889. 22. Lilja L and Hellzen O. Former patients’ experience of psychiatric care: a qualitative investigation. Int J Ment Health Nurs 2008; 17(4): 279–286. 23. Ahlstro¨m B, Ska¨rsa¨ter I and Danielson E. The meaning of major depression in family life: the viewpoint of the ill parent. J Clin Nurs 2010; 19(1–2): 284–293. 24. Ewertzon M, Andershed B, Svensson E, et al. Family member’s expectation of the psychiatric healthcare professionals’ approach towards them. J Psychiatr Ment Health Nurs 2011; 18(2): 146–157. ˚ and Lindwall L. Respecting dignity in forensic care: the challenge faced by nurses of 25. Gustafsson L-K, Wigerblad A maintaining patient dignity in clinical caring situations. J Psychiatr Ment Health Nurs 2011; 20(1): 1–8. 26. Skorpen F, Thorsen AA, Ra˚holm MB, et al. Caring with dignity – a Q-methodological study of staff members’ experiences in a psychiatric context. Operant Subj 2013; 36(1): 1–24. 27. Lindseth A and Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci 2004; 18(2): 145–153. 28. Hilborn RC. Sea gulls, butterflies, and grasshoppers: a brief history of the butterfly effect in nonlinear dynamics. Am J Phys 2004; 72: 425–427. 29. Wiklund Gustin L and Wagner L. The butterfly effect of caring – clinical nursing teachers’ understanding of self-compassion as a source to compassionate care. Scand J Caring Sci 2013; 27(1): 175–183.
11
Downloaded from nej.sagepub.com at Freie Universitaet Berlin on May 11, 2015
