EMPIRICAL STUDIES

doi: 10.1111/scs.12229

Views concerning patient dignity among relatives to patients experiencing psychosis Frode Skorpen RN, PhD (Associate Professor)1,2, Arlene Arstad Thorsen PhD (Associate Professor)3, Christina Forsberg RN PhD (Associate Professor)2 and Arne Rehnsfeldt RN PhD (Professor)1 1

Faculty of Health Education, Stord/Haugesund University College, Stord, Norway, 2Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden and 3Center for learning Environment, University of Stavanger, Stavanger, Norway

Scand J Caring Sci; 2016; 30; 117–128 Views concerning patient dignity among relatives to patients experiencing psychosis

Background: Mental illness influences not only the suffering patient but often changes family life forever and results in experience of reduced dignity for both patients and relatives. Aim: The aim of this study was to reveal relatives’ opinions regarding what is important for taking care of patients’ dignity. Participants: Thirteen relatives of patients experiencing psychosis were recruited through a relatives’ user organisation. Research design: The methodological approach is Q methodology. A Q sample of 51 statements was sorted in a

Introduction This study is part of a project regarding patient dignity in which patients who have experienced psychosis, staff members and relatives are asked about patient dignity. This article investigates the perspective of relatives. Previously, relatives were seen as part of and sometimes even a cause of a patient’s suffering. Now, relatives are seen as vital for patients’ health (1). Mental illness is a family experience and there exists a reciprocal influence so that mental illness often changes family life forever (2). It is possible to understand this in line with what Løgstrup (3) describes as ontological interdependence. Løgstrup also discusses an ethical demand regarding the care of another human being when one sees him or her suffering. Martinsen and Kjær (4), influenced by Løgstrup (3), refers to the golden rule as a universal expression of ethical demand and notes that it is a human obligation to take care of other Correspondence to: Frode Skorpen, Stord /Haugesund University College, Faculty of health education, Postboks 1064, N-5407 Stord, Norway. E-mail: [email protected] © 2015 Nordic College of Caring Science

quasinormal distribution curve. Postinterviews were conducted with all participants. Results: Four viewpoints emerged described as ‘value based’, ‘expectations’, ‘asymmetric’ and ‘nuanced’. Conclusion: Focus on overarching values such as honesty and respect, to involve patients and relatives in care, by reducing asymmetry between patients and staff, with staff taking total responsibility for a patient’s situation when needed, all represent aspects of taking care of patient dignity. Keywords: dignity, psychosis, Q methodology, relatives, suffering. Submitted 22 September 2014, Accepted 24 February 2015

human beings because of their vulnerability and unconditional dignity. This unconditional dignity (4) Edlund et al. (5) describe as absolute dignity. Jacobson (6) names it human dignity. Nordenfeldt (7) describes it as universal dignity or ‘Menchenvurde’, something unique, given to human beings. Dignity is also something relatively influenced by self-experience, situation and culture (5–7). Edlund et al. (5, p. 854) describes dignity as ‘an inner ethical stance [that] confers awareness of one’s own and others’ dignity’ and ‘external dignity [as] aesthetic conducts that exhibit dignity in action’. According to Jacobson (8), dignity violation occurs most often when one part is in a position of vulnerability and the other part is in a position of antipathy. Asymmetry between the parties and objectification, results in violation of their dignity (8). There is also a relationship between dignity and autonomy. Dignity and integrity are ever present and constant, but a person’s autonomy can vary depending on circumstances (9). Earlier research has shown that relatives of patients with mental illnesses sometimes suffer more than the patients (2). Relatives have to deal with both the patient’s reactions to their suffering and their own responses to the patient’s suffering (10). Relatives have to find a ‘balance’ between 117

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taking responsibility for the patient and losing contact in order to focus on themselves (11). Family caregivers of persons with mental illnesses experience a high level of burden and suffer from stress (12). Relatives report being exhausted, irritable and having poorer health than the general population (13, 14). Relatives of patients with mental illnesses experience inadequate assistance from healthcare professionals (12). They struggle in order to obtain help (15) and want support from the healthcare system, but feel that their need is catered to only minimally (16). Relatives experience cooperation between the healthcare system and the home, but no professionals take overall responsibility (17). Relatives found dignity important for the quality of care in a psychiatric setting. Competent, well-trained staff, who possess self-knowledge, empathy, involvement and humour, help themselves and patients reduce their feelings of shame and confirm them as equal to everyone else, all of which has a positive influence on their experience of dignity (18). Maintaining the dignity of service users involves a balance between allowing them some decision-making with regard to their own situations and simultaneously preventing them from making unhealthy decisions (19). When patients who have experienced psychosis were asked about their dignity, some of them claimed to experience dignity and being cared for as equal human beings. Some patients experienced dignity despite suffering. Other patients experienced suffering due to feelings of inferiority, while some experienced suffering and said that they had to fight for their dignity (20). Being confirmed as a human being, being equal to everyone else and encountering competent, well-trained staff, who possess self-knowledge, empathy and humour, all have a positive influence on patients’ experience of dignity. Patients want help in diminishing their feelings of shame, and staff who work to understand them in vulnerable situations (21). When mental healthcare staff were asked about maintaining patients’ dignity, some staff members focused on the patient and on overarching values – that is, that all human beings are unique and equal individuals, but also that all humans are vulnerable. Some staff focused on their own challenges in interacting with patients (22). Professional caregivers found themselves promoting patients’ dignity when they allowed themselves to be touched by their patients’ stories, and let patients share with them their worry, fear and anxiety. Sometimes they have to be patients’ voices. By not respecting patients’ self-determination, by giving patients sedatives by force instead of talking with them and by letting them wait without explaining why, healthcare staff violate patients’ dignity (23).

Purpose Participants in this study consist of relatives of patients who have experienced psychosis. Based on a

pre-understanding about human interdependence, the purpose of the present study is to reveal these relatives’ views regarding what is important for taking care of patients’ dignity when they are admitted to a mental health hospital.

Ethical considerations The Regional Committee for Medical Research Ethics in western Norway (reg. no. 2008/13776 CAG) and the Norwegian Data Protection Agency (reg. no. 20522/2) approved the study. Also, wards within the mental health hospital in which the qualitative interviews were collected approved participation. All participants gave written consent and were informed verbally and in writing that they were free to withdraw from the study at any time. Background information and written consent from the participants were stored separately.

Method The methodology chosen was Q methodology. The aim of using Q methodology is to investigate subjective viewpoints and preferences, and it is an alternative to qualitative and quantitative methodological approaches (24, 25). Q methodology is distinguished from qualitative approaches when studying subjective phenomena primarily by the fact that in Q methodology, participants’ viewpoints are derived statistically as part of the analysis and interpretation process (25). Q methodology is distinguished from quantitative research methods primarily because in quantitative research, when developing a questionnaire, one wants to eliminate qualitative variations regarding how people think or feel, as well as their psychological significance relative to a set of items. The opposite is the case in Q methodology, in which one assumes that one person’s understanding of a set of items can qualitatively differ from another person’s understanding of the same items (26). The number of participants also differs compared to quantitative approaches: in Q methodology small groups such as a dozen participants can create meaningfully discernible groups (27). AkhtarDanesh et al. (28) describe Q methodology in the seven steps listed below. Steps 1 and 2 are common to both this study and the patient (20) and staff studies (22) conducted earlier. In Steps 3 and 4, data for this study are collected. In Steps 5, 6 and 7, data entry, analysis and interpretation take place. Step 1: Collecting the concourse, which involves identifying and developing a list of statements about the universe of communication relevant to the topic, can be collected from a wide range of sources, such as literature, pictures and interviews. Step 2: Developing the Q sample by reducing and clarifying statements from the concourse. © 2015 Nordic College of Caring Science

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Table 5 Extreme scores and distinguishing statements for factor 1 (value based) 16) It is important to be honest. It is about how staff behave and how they say things 4) Dignity is a question of having respect for people’s uniqueness, irrespective of what kind of diagnosis or illness they have +5 7) When you treat everyone alike, then you do not necessarily address individuals’ dignity 3) Everyone is entitled to be equally valued. Whether one is mentally ill, a drug addict or murderer, we are all equally valuable 12) Patients have an intrinsic dignity that can be trampled on in the health service 27) One must be capable of taking others’ opinions seriously and accepting that they do not feel the same way you do 5) All people are equally valuable, and everyone has the opportunity and potential to change things and make things better 20) Sometimes you feel forced and then you feel that your dignity has not been upheld 30) The patient must be able to trust and feel safe with the personnel 6) As a patient, one finds comfort and peace in one’s faith 25) It is important that someone asks the patient how he feels 37) Attitudes, particularly amongst managers, are important. This has a trickle-down effect in the units 28) People have to talk normally to you and not put on airs 10) If staff does not value patients for who they are, even when they are unwell, then the patient will not be able to value themselves. 32) The staff are nice, but superficial 44) User participation is nonexistent, no one asks the patients 36) Staff show over and over that they do not think the patients know what is best for them 49) Time pressure today creates a greater divide between ideal and the reality 47) The standard of things in Norway has been so high, that as soon as people fall below the standard, they think there is a crisis when there is not 13) After encounters with the mental health service, I have more respect for difference 34) Staff may unconsciously exercise authority, for example, by walking through the corridor jangling their keys 2) As human beings, deep inside we are all inviolable 29) It is the nursing staff the patients talk to if there is something he wants to talk

+5a

+4 +4a +4 +3 +3 +3 +3 +2a +2a 0 1a 2 3 3 3 3 4 4 4 5 5a

Distinguishing statements (p < 0.01).

a

and the attitudes of managers all influence how patients value themselves. Encounters with mental health services also increased their respect for difference. They perceived not being able to talk with others about patients’ illnesses as an isolating experience, but at the same time, they disagreed with the notions that no one asks the patients, that there is no user participation and that it is difficult to complain about treatment. They stressed the importance of cooperation between relatives and staff. Maria said that ‘sometimes [staff said] ‘oh God, so great [important] that you said it’, and I think oh God, if I had not informed them about it’. Also, the use of confidentiality among staff was stressed as an obstacle. Cathrine said: ‘I think that confidentiality is often lost en route


How can you [get permission] from someone who is sick?’ The use of diagnosis could be seen as a kind of pillow and a self-fulfilling prophecy, and ‘one is a human more than one is a diagnosis


; and that they [staff] manage to see the person behind the diagnosis


, especially when it comes to dignity


, is such an eye-opener’ (Christin). The interpretation here is that this view suggests ‘expectations’.

Two relatives defined Viewpoint 3 (Table 7). They expressed the experience of asymmetry in the relationship between patients and staff: for example, that staff unconsciously exercise authority and patients are shuffled here and there as if they were on a conveyor belt. Patients’ dignity could be taken away, depending on how strong one’s dignity is, or how vulnerable one is as a patient. Relatives with this viewpoint disagreed with the thought that deep down human beings are inviolable. They found it important that staff talk normally to patients, that professional knowledge and user participation should be equally valuable and that patients feel safe and trust in staff. They also indicated that treating everyone alike does not necessarily address individual dignity. They disagreed with the point that, for patients, being given a diagnosis meant nothing. They also disagreed that it is not possible to complain about one’s treatment. Also worth noting is that they disagreed that it is important for people to ask patients how they feel. They strongly opposed that patients find comfort and peace in their faith. Comments from the postinterviews elaborated their viewpoints. Jane sometimes felt that ‘they [staff]

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Table 1 Q sample and factor array for Viewpoints 1–4 Factor array Statement 1) Seeing oneself as valuable does not mean that you are more or less valuable than others, but are equally valuableb 2) As human beings, deep inside we are all inviolableb 3) Everyone is entitled to be equally valued. Whether one is mentally ill, a drug addict or murderer, we are all equally valuable 4) Dignity is a question of having respect for people uniqueness, irrespective of what kind of diagnosis or illness they have 5) All people are equally valuable, and everyone has the opportunity and potential to change things and make things better 6) As a patient, one finds comfort and peace in one’s faith 7) When you treat everyone alike, then you do not necessarily address individuals’ dignity 8) One has dignity until it is taken away. If it is strong, no one can take it from you. If you are vulnerable and downtrodden, it does not take much 9) If one takes away the dignity of others, then both parts are affected 10) If staff does not value patients for who they are, even when they are unwell, then the patient will not be able to value themselves. 11) No one views mental illness as being the same as breaking your footb 12) Patients have an intrinsic dignity that can be trampled on in the health service 13) After encounters with the mental health service, I have more respect for difference 14) Humour is important 15) Sometimes the experience of violation can be a wake-up call; something good can come of it 16) It is important to be honest. It is about how staff behave and how they say things 17) As a patient, being given a diagnosis means nothing, because you know there is something wrong with you 18) There is a link between how one feels physically and how one feels mentally 19) As a patient, it is degrading not to look well groomed 20) Sometimes you feel forced and then you feel that your dignity has not been upheld 21) When you feel inferior, it is easy to have your dignity taken away. It does not happen in psychiatry; it has happened before 22) I am not against coercion, but I am against unnecessary coercion 23) Most people understand that wrong can be done, but they do not understand when things are not dealt with or when no justification or apology is given 24) No one thinks using medicine is good, if it is to treat blood pressure or diabetes. But sometimes it is necessary and that is how it is with psychiatric disorders too. 25) It is important that someone asks the patient how he feels 26) Staff should listen to what the patient says, since the patient is the one having the experienceb 27) One must be capable of taking others’ opinions seriously and accepting that they do not feel the same way you do 28) People have to talk normally to you and not put on airs 29) It is the nursing staff the patients talk to if there is something he wants to talk about 30) The patient must be able to trust and feel safe with the personnelb 31) Not being able to talk with others about the illness is a very isolating experience 32) The staff are nice, but superficialb 33) One should talk to the patient not patronise them. Staff may not think they patronise patients, but they dob 34) Staff may unconsciously exercise authority, for example, by walking through the corridor jangling their keys 35) As a patient, every time you want to talk to someone, there is a new therapist. It is tiresome, because then you cannot build up any form of trusting relationshipb 36) Staff show over and over that they do not think the patients know what’s best for themb 37) Attitudes, particularly amongst managers, are important. This has a trickle-down effect in the units 38) The staff’s level of knowledge is important. Knowledge is always importantb 39) When the patients were discharged, they were the ones who had to report how their stay had been 40) The fact that there is a good atmosphere when the patient is admitted onto a unit, that is important 41) Education can never replace staff’s individual suitability

1 1

2 0

3 0

4 3

5 4a

5 2

5 0

4 4a

5

4

0

1

3

4

4

1a

2a 4 1

4a 3a 1

5a 5 3a

0a 2 2

1 2a

2 3

1a 0a

3 4

1 4 4 0 1 5a 2

1 1 2 0 2 1 5

1 2 1 1 1 0 4

0 1 1 2 5a 0 2

0 1 3 2

1 0a 1 1

3 2 1 0

1 5a 1 1

0 2

1 0

0 1

4a 2

1

1

1

5a

2a 1 3

5a 1 0

4 2 1

2 1 4

1a 5a 3 2 3 1 4 1

2 1 3 3 2 1 2 2

4 1 5 2 2 2 3a 1

4a 0 2 2 3 3 1 2

3 0a 2 0 0 2

2 3 0 3a 4 1a

2 2a 2 3a 1 1

1 5 0 0 0 3

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Table 1 (Continued) Factor array 42) Professional knowledge and user experience must be given equal worth 43) If you want to complain about the treatment, you will not get far, because the healthcare system has its back completely covered 44) User participation are nonexistent, no one ask the patients 45) As a patient, you are passed here and there, just like on a conveyor belt! 46) The health service has a long way to go in terms of including relatives to a greater extent in the treatment 47) The standard of things in Norway has been so high, that as soon as people fall below the standard, they think there is a crisis when there is notb 48) Many people, once they come out of psychosis, are frightened that so much time has passed before someone intervened. It is a form of state neglectb 49) Time pressure today creates a greater divide between ideal and the reality 50) Money is no obstacle to one, as a patient, living as you want to live 51) Housing issues are importantb

1 0

3a 3

3a 3

1 1

3 0 0

4 0 5a

0a 4a 2

3 3a 1

4

2

3

3

2

0

0

2

3 1 1

1 4 0

3 4 1

0 1 1

Distinguishing statements are distinguishing statements for factor 1, 2, 3 and 4 at p < 0.05. Consensus statements: 13 statements were nonsignificant at a level of 0.01. Nine of these statements were nonsignificant at 0.05 level.

a

b

Table 2 Demographic variables and relatives

Table 3 Factor loadings for factors 1–4 N13

Gender Male Female Age 20–29 30–39 40–49 50–59 60 and older Relatives of Spouse Parent Siblings Children over the age of 18

3 10 1 3 4 – 5 1 1a 3a 9

Kari Espen Susann Maria Cathrine Rakel Christin Helga Jane Anders John Annie Johanna Explained variance %

Factor 1

Factor 2

Factor 3

Factor 4

0.81X 0.86X 0.63X 0.06 0.05 0.15 0.41 0.25 0.06 0.05 0.36 0.33 0.33 18

0.06 0.05 0.40 0.70X 0.70X 0.71X 0.68X 0.25 0.01 0.04 0.17 0.49 0.48 21

0.20 0.06 0.33 0.26 0.03 0.04 0.21 0.71X 0.85X 0.02 0.44 0.46 0.12 15

0.17 0.04 0.33 0.10 0.04 0.48 0.35 0.09 0.00 0.88X 0.61X 0.17 0.47 15

a

Relative of siblings and parent.

implies they know better than the patients. They also disagreed strongly that it was nursing staff they contacted if there was something to talk about. In the postinterviews, Susann described what happens if staff were not honest, and said: ‘if they [patients] have already had paranoid thoughts


, then [their paranoid thoughts] would increase tremendously’. Kari said that ‘it has to do with dignity


If one is seen as stupid or as unenlightened, then one experiences violation’. About treating everyone equally (21), Espen said that ‘if you treat everyone equally, one does not take care of each individual human being


; it begins to be a routine’. This view is interpreted as ‘value based’. Four relatives defined Viewpoint 2 (Table 6) and expressed expectations of what dignity is. These relatives emphasised dignity as respecting people’s uniqueness and © 2015 Nordic College of Caring Science

Table 4 Correlation between factor scores

1 2 3 4

1

2

3

4

1.00 0.35 0.34 0.32

1.00 0.29 0.26

1.00 0.13

1.00

the fact that all human beings are equally valuable. They claimed that relatives should be involved to a greater extent in patients’ situations and that patients should be asked about their own situations. However, they strongly opposed that deep down all human beings are inviolable and that for patients being given a diagnosis means nothing. How staff value patients, the atmosphere of a ward

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Table 5 Extreme scores and distinguishing statements for factor 1 (value based) 16) It is important to be honest. It is about how staff behave and how they say things 4) Dignity is a question of having respect for people’s uniqueness, irrespective of what kind of diagnosis or illness they have +5 7) When you treat everyone alike, then you do not necessarily address individuals’ dignity 3) Everyone is entitled to be equally valued. Whether one is mentally ill, a drug addict or murderer, we are all equally valuable 12) Patients have an intrinsic dignity that can be trampled on in the health service 27) One must be capable of taking others’ opinions seriously and accepting that they do not feel the same way you do 5) All people are equally valuable, and everyone has the opportunity and potential to change things and make things better 20) Sometimes you feel forced and then you feel that your dignity has not been upheld 30) The patient must be able to trust and feel safe with the personnel 6) As a patient, one finds comfort and peace in one’s faith 25) It is important that someone asks the patient how he feels 37) Attitudes, particularly amongst managers, are important. This has a trickle-down effect in the units 28) People have to talk normally to you and not put on airs 10) If staff does not value patients for who they are, even when they are unwell, then the patient will not be able to value themselves. 32) The staff are nice, but superficial 44) User participation is nonexistent, no one asks the patients 36) Staff show over and over that they do not think the patients know what is best for them 49) Time pressure today creates a greater divide between ideal and the reality 47) The standard of things in Norway has been so high, that as soon as people fall below the standard, they think there is a crisis when there is not 13) After encounters with the mental health service, I have more respect for difference 34) Staff may unconsciously exercise authority, for example, by walking through the corridor jangling their keys 2) As human beings, deep inside we are all inviolable 29) It is the nursing staff the patients talk to if there is something he wants to talk

+5a

+4 +4a +4 +3 +3 +3 +3 +2a +2a 0 1a 2 3 3 3 3 4 4 4 5 5a

Distinguishing statements (p < 0.01).

a

and the attitudes of managers all influence how patients value themselves. Encounters with mental health services also increased their respect for difference. They perceived not being able to talk with others about patients’ illnesses as an isolating experience, but at the same time, they disagreed with the notions that no one asks the patients, that there is no user participation and that it is difficult to complain about treatment. They stressed the importance of cooperation between relatives and staff. Maria said that ‘sometimes [staff said] ‘oh God, so great [important] that you said it’, and I think oh God, if I had not informed them about it’. Also, the use of confidentiality among staff was stressed as an obstacle. Cathrine said: ‘I think that confidentiality is often lost en route


How can you [get permission] from someone who is sick?’ The use of diagnosis could be seen as a kind of pillow and a self-fulfilling prophecy, and ‘one is a human more than one is a diagnosis


; and that they [staff] manage to see the person behind the diagnosis


, especially when it comes to dignity


, is such an eye-opener’ (Christin). The interpretation here is that this view suggests ‘expectations’.

Two relatives defined Viewpoint 3 (Table 7). They expressed the experience of asymmetry in the relationship between patients and staff: for example, that staff unconsciously exercise authority and patients are shuffled here and there as if they were on a conveyor belt. Patients’ dignity could be taken away, depending on how strong one’s dignity is, or how vulnerable one is as a patient. Relatives with this viewpoint disagreed with the thought that deep down human beings are inviolable. They found it important that staff talk normally to patients, that professional knowledge and user participation should be equally valuable and that patients feel safe and trust in staff. They also indicated that treating everyone alike does not necessarily address individual dignity. They disagreed with the point that, for patients, being given a diagnosis meant nothing. They also disagreed that it is not possible to complain about one’s treatment. Also worth noting is that they disagreed that it is important for people to ask patients how they feel. They strongly opposed that patients find comfort and peace in their faith. Comments from the postinterviews elaborated their viewpoints. Jane sometimes felt that ‘they [staff]

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Table 6 Extreme scores and distinguishing statements for factor 2 (expectations) 46) The health service has a long way to go in terms of including relatives to a greater extent in the treatment 25) It is important that someone asks the patient how he feels 4) Dignity is a question of having respect for people’s uniqueness, irrespective of what kind of diagnosis or illness they have 40) The fact that there is a good atmosphere when the patient is admitted onto a unit, that is important 5) All people are equally valuable, and everyone has the opportunity and potential to change things, and make things better 31) Not being able to talk with others about the illness is a very isolating experience 37) Attitudes, particularly amongst managers, are important. This has a trickle-down effect in the units 30) The patient must be able to trust and feel safe with the personnel 10) If staff does not value patients for who they are, even when they are unwell, then the patient will not be able to value themselves 13) After encounters with the mental health service, I have more respect for difference 19) As a patient, it is degrading not to look well groomed 41) Education can never replace staff’s individual suitability 7) When you treat everyone alike, then you do not necessarily address individuals’ dignity 39) When the patients were discharged, they were the ones who had to report how their stay had been 43) If you want to complain about the treatment you will not get far, because the healthcare system has its back completely covered 42) Professional knowledge and user experience must be given equal worth 6) As a patient, one finds comfort and peace in one’s faith 44) User participation is nonexistent, no one asks the patients 50) Money is no obstacle to one, as a patient, living as you want to live 17) As a patient, being given a diagnosis means nothing, because you know there is something wrong with you 2) As human beings, deep inside we are all inviolable

+5a +5a +4 +4 +4 +3 +3 +3 +3 2a 0 1 3a 3 3 3 4 4 4 5 5

Distinguishing statements (p < 0.01).

a

Table 7 Extreme scores and distinguishing statements for factor 3 (asymmetric) 7) When you treat everyone alike, then you do not necessarily address individuals’ dignity 30) The patient must be able to trust and feel safe with the personnel 5) All people are equally valuable, and everyone has the opportunity and potential to change things and make things better 28) People have to talk normally to you and not put on airs 45) As a patient, you are passed here and there, just like on a conveyor belt 39) When the patients were discharged, they were the ones who had to report how their stay had been 42) Professional knowledge and user experience must be given equal worth 8) One has dignity until it is taken away. If it is strong, no one can take it from you. If you are vulnerable and downtrodden, it does not take much 34) Staff may unconsciously exercise authority, for example, by walking through the corridor jangling their keys 46) The health service has a long way to go in terms of including relatives to a greater extent in the treatment 10) If staff does not value patients for who they are, even when they are unwell, then the patient will not be able to value themselves 44) User participation is nonexistent, no one asks the patients 9) If one takes away the dignity of others, then both parts are affected 37) Attitudes, particularly amongst managers, are important. This has a trickle-down effect in the units 18) There is a link between how one feels physically and how one feels mentally 47) The standard of things in Norway has been so high, that as soon as people fall below the standard, they think there is a crisis when there is not 49) Time pressure today creates a greater divide between ideal and the reality 43) If you want to complain about the treatment, you will not get far, because the healthcare system has its back completely covered 17) As a patient, being given a diagnosis means nothing, because you know there is something wrong with you 25) It is important that someone asks the patient how he feels 50) Money is no obstacle to one, as a patient, living as you want to live 2) As human beings, deep inside we are all inviolable 6) As a patient, one finds comfort and peace in one’s faith Distinguishing statements (p < 0.01).

a

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+5 +5 +4 +4 +4a +3a +3a +3a +3a +2 0 0 1 2 3 3 3 3 4 4 4 5 5

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Table 8 Extreme scores and distinguishing statements for factor 4 (nuanced) 24) No one thinks using medicine is good, if it is to treat blood pressure or diabetes. But sometimes it is necessary and that is how it is with psychiatric disorders too 37) Attitudes, particularly amongst managers, are important. This has a trickle-down effect in the units 10) If staff does not value patients for who they are, even when they are unwell, then the patient will not be able to value themselves 22) I am not against coercion, but I am against unnecessary coercion 27) One must be capable of taking others’ opinions seriously and accepting that they do not feel the same way you do 41) Education can never replace staff’s individual suitability 1) Seeing oneself as valuable does not mean that you are more or less valuable than others, but are equally valuable 9) If one takes away the dignity of others, then both parts are affected 33) One should talk to the patient not patronise them. Staff may not think they patronise patients, but they do 5) All people are equally valuable, and everyone has the opportunity and potential to change things, and make things better 6) As a patient one finds comfort and peace in one’s faith 32) The staff are nice, but superficial 44) User participation is nonexistent, no one asks the patients 45) As a patient, you are passed here and there, just like on a conveyor belt 47) The standard of things in Norway has been so high, that as soon as people fall below the standard, they think there is a crisis when there is not 28) People have to talk normally to you and not put on airs 2) As human beings, deep inside we are all inviolable 3) Everyone is entitled to be equally valued. Whether one is mentally ill, a drug addict or murderer, we are all equally valuable 15) Sometimes the experience of violation can be a wakeup call; something good can come of it 19) As a patient, it is degrading not to look well groomed

+5a +5 +4 +4a +4 +3 +3 +3 +3 +1 0a 3 3 3a 3 4a 4 4a 5a 5a

Distinguishing statements (p < 0.01).

a

are following a recipe and do not listen to what others [patients or relatives] have to say’. Helga said about user experience that ‘it is all about dignity and respect.


we can withstand a great deal if we experience that people believe in us’. When it comes to asking the patients about how they feel, Jane said that ‘in difficult situations it is okay that people ask [patients], but when they’re feeling better it could be a reminder of their problems’. Overall, this view is interpreted as ‘asymmetric’. Two relatives defined Viewpoint 4 (Table 8) and communicated what may be described as a nuanced position. These relatives understood the need for using force and medication in patient care. They found the attitudes of managers, staff who appreciate that patients are ill, staff who do not patronise patients and staff who take their patients’ opinions seriously are important for patients’ experience of dignity. They disagreed with the idea that human beings are intrinsically inviolable and also disagreed with the claim that human beings are equally valuable no matter what they have done. They did not find staff superficial, did not feel that patients are treated as if they were on a conveyor belt, and did not think that there is no user participation. John described how ‘he [the patient] did not realise that medical treatment had to last for a very long time, possibly for the rest of his life, but then he learned something by suddenly getting worse’. Anders said about coercion: ‘had it not been for coercion, my relative would not be alive today’.

However, they did not think that anything good could come from violating people. As John put it, ‘some people have always experienced violation, and cannot find the inner strength or energy you need in order to resist violation’. They also did not feel that human beings in general are all equally valuable. Anders asked: ‘the worst mass murderer


: is it possible to say that that person has the same dignity as a person who has done good deeds all his life?’ Overall, this view was interpreted as ‘nuanced’. There were 13 consensus statements pointing at similarities, including nine at p < 0.05 (Table 1). They indicate that staff should listen to their patients (statement 26), patients should be able to trust and feel safe with staff (statement 30), staff should not patronise patients as has been reported (statement 33), and frequent changes in a patient’s therapist are an obstacle to building a trusting relationship. They ranked more neutrally that all human beings are of equal value (statement 1), that no one views mental and physical illness as the same (statement 11), that staff knowledge is important (statement 38), that when patients are psychotic someone else should take responsibility (statement 48) and that housing issues are important (statement 51). All relatives disagreed with the idea that staff were nice but superficial, and with the notion that staff sometimes do not think patients know what is best for them. They also disagreed with the claims that all people are innately inviolable © 2015 Nordic College of Caring Science

Views concerning patient dignity (statement 2) and that standard of living makes people feel there is a crisis when there is not (statement 47).

Discussion Four viewpoints described as ‘value based’, ‘expectations’, ‘asymmetric’ and ‘nuanced’ were revealed and reflect relatives’ experiences. For relatives defining Viewpoint 1 (‘value based’), values such as honesty and respect for the uniqueness of all human beings were the ideas with which they most agreed. A similar but not identical viewpoint is identified in a patient study (20) and a staff study (22). This is in line with a caring science perspective which describes human beings as unique, vulnerable and with inherent dignity (31). The uniqueness of human beings is also described by the dignity researchers Edlund et al. (5) and Jacobson (6). This human uniqueness is not possible to test or prove empirically, but it is a position that all human beings, as belonging to society but also as individuals, need to assume. Having a value-based perspective does not mean that relatives found everything perfect. Relatives reported, for example, that patients’ intrinsic dignity could be trampled on within the healthcare system and that no one is inviolable. However, their understanding of how patients are taken care of was not dominated by these dignity-reducing experiences. Being honest and respecting the uniqueness of individuals might be considered ‘ideals’, but, as discussed by Skorpen et al. (22), ideals can be prerequisites for actions. One relative said that treating people equally is not to treat them all in the same way. Treating them equally is to treat them as unique individuals. Another relative used as an example that if a patient is paranoid, being honest or not with that patient can directly influence the patient’s situation. One way of understanding this, based on relatives’ comments, is that patients’ experiences of dignity may be a question of how something is done more than what is done. The extent to which a situation does or does not promote patients’ dignity is embedded in nuances or details. Staff members need to be aware of these details in every unique meeting to maintain and promote the patient’s dignity. Relatives defining Viewpoint 2 (‘expectations’) share the view with relatives who hold a value-based viewpoint that there are some overarching values important for human beings. They also communicated awareness of patients’ vulnerability, such as being given a diagnosis means something to patients, but their main focus seems to be on expectations regarding how staff members should behave towards patients and relatives with respect to maintaining patients’ dignity. The attitudes of ward managers, the atmosphere in a ward and the willingness of staff to listen to their patients all influence, according to relatives, patients’ experience of dignity. Earlier © 2015 Nordic College of Caring Science

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research has shown that staff qualities such as empathy, becoming involved with patients and expressing a sense of humour influence the experience of dignity on the part of relatives (18) and patients (21). Relatives also indicated that they should be included to a greater extent in patient care, something which has also been found in earlier studies (16, 17). Based on a pre-understanding about the interdependence of human beings (3) and studies which have shown how the suffering of patients creates suffering for relatives (2, 10, 13, 17), staff members should listen to a greater degree to relatives’ wishes to be involved in patient care. In the postinterviews, relatives mentioned staff use of confidentiality as a ‘legitimised’ obstacle and the fact that relatives had to be the ones to take the initiative and go above staff concerning patients’ situations. This became another kind of obstacle concerning cooperation. McFarlane et al. (1) state that there has been a shift regarding the way in which professionals understand relatives’ influence on patients; however, based on the experiences of relatives in the present study, one could question to what extent such a shift has taken place everywhere. Earlier studies have shown that being confirmed and being respected as a human being were important for relatives’ (18) and patients’ (21) experience of dignity. One can assume that the way in which relatives experience themselves being met by staff influences the way in which relatives are able to meet the patients. Relatives defining Viewpoint 3 (‘asymmetric’) experience lack of equality between staff and patients or themselves. In their perception, staff who treat patients as if they were on a conveyor belt, staff who unconsciously demonstrate authority and staff use of diagnosis result in patients being placed in a vulnerable position. Relatives stressed and elaborated the importance of believing in patients. They also experienced that staff behave as if following a recipe. Similar experiences such as a lack of equality, a feeling of inferiority, and distance and imbalance in their relationships with staff were also found in a study among patients who have experienced psychosis (20). Asymmetry in the relation between the parties, as described by Jacobson (8), can result in reduced dignity for the weakest parties. One way of understanding this asymmetry is as found in a study by Skorpen et al. (22) in which staff members described how their capacity to view the patient as a unique individual was reduced as a consequence of both private and professional burdens. Staff members were unable to distinguish between the present situation and previous experiences (22). Looking for similarities among persons, such as referring to people as diagnosis, can be a means through which staff try to endure their own burden and suffering. Patients and relatives are thus reduced from suffering human beings (subjects) to illnesses (objects). Relatives defining Viewpoint 4 (‘nuanced’) represent a balanced view as they are aware that patients are in

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a vulnerable situation and that the behaviour of staff and ward managers influences patients’ experiences. They also indicated that it is the responsibility of mental health staff to take care of patients’ dignity when patients are in a vulnerable position, something which is supported by other findings (19, 20). Staff responsibility for the care of patients was communicated by relatives in that they saw the value of medication, including the use of coercion to administer it, even when the patients were unable to see the value of it at the time. Similar results were obtained in a study among patients (20) in which some patients retrospectively recognised the necessity of medication. Use of coercion is and should be debated since it involves reducing a patient’s autonomy. Mental healthcare services in Norway are criticised for the use of coercion because the rate of such use is higher than in other European countries (32). However, as discussed by Aasen et al. (9), sometimes it is the duty of staff to take care of patients when they are not able to do it by themselves. Solbjør et al. (19) found that maintaining the dignity of service users constitutes a balance between hindering them from making unhealthy decisions and allowing them as much control over their own lives as possible. What is crucial, as elaborated in the postinterviews, is that patients (and relatives) find meaning in these interventions, maybe not in the present, but retrospectively. The four viewpoints regarding taking care of patients’ dignity identified among relatives are to some degree in line with what was communicated in a study by Skorpen et al. (20) among patients. Also, Schr€ oder et al. (21) found a degree of similarity among patients and relatives (18) regarding patient dignity. Despite the differences, consensus was also present among relatives with respect to individual statements. Consensus statements on the positive side of the grid show that relatives are aware that the way in which mental healthcare staff interact with patients plays a major role in taking care of and protecting patients’ dignity. Relatives are not entirely positive or negative in their views on mental healthcare staff. On the one hand, they find that staff sometimes patronise patients, but they disagree with the assertion that staff are superficial. Even if relatives were asked about what they perceived to be important for patients’ experience of dignity, in the postinterviews, they reflected on both the patients’ and their own experiences. A similar trend was found in a study by Schr€ oder (18) describing how mental illness affects the whole family. Human lives are so interwoven and interdependent (3) in relation to each other that it can be difficult for relatives to distinguish between their own and patients’ experiences.

Methodological considerations Other viewpoints might have been found if participants had been recruited from other groups of relatives beyond the members of relatives’ user organisations, or if the number of participants had been higher, even though the use of small participant samples is acceptable in Q methodological research (27). Naturalistic statements (33) extracted from qualitative interviews can be difficult to interpret and may therefore be a possible methodological setback. A Q sample based solely on qualitative interviews with relatives would also communicate something different than the Q sample developed from interviews with patients, staff and relatives. However, the use of the same Q sort in this study as in a study of patients (20) and a study of staff (22) opens up possibilities for further analysis. The question of generalisation normally arises when doing quantitative research; however, in Q methodology, the purpose is not to generalise from the participants to a wider population (29). The purpose of a Q methodological study is to increase understanding of a phenomenon. On the other hand, establishing the existence of the four viewpoints in this study could have implications for people beyond the study participants.

Conclusion and implications for practice Results of this study indicate that among relatives several viewpoints exist regarding the maintenance of patients’ dignity. All four viewpoints identified can contribute to an understanding among mental healthcare staff, regarding taking care of patients’ dignity. In accordance with the perspectives of these relatives, overarching values such as equality, honesty and respect should be the focus for staff when working to preserve patients’ dignity. The degree to which patients and relatives are involved in care and the ability of professional caregivers to see the individual patient and be aware of the asymmetry between patients and staff have an influence on patients’ experience of dignity. Relatives also indicated that taking care of a patient’s dignity sometimes involves taking total responsibility for a patient’s situation. The similarity between the views of relatives and patients regarding the maintenance of patients’ dignity indicates the importance of staff members listening to relatives’ and patients’ viewpoints. Based on the views of relatives, the implications for practice are that staff need as an ongoing process: • to discuss which overarching values are important for taking care of patients’ dignity • to emphasise cooperation with relatives as an integral component of protocols for patient care • to focus on ward managers’ attitudes, ward atmosphere and the way in which staff listen to and recognise

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Views concerning patient dignity

• •

patients as unique individuals, as important factors that influence patients’ dignity to be aware that taking care of patients’ dignity is just as much a question about how something is done as what is done to reduce the asymmetry in the relationship between patients and staff.

Author contribution Frode Skorpen (FS) have had main responsibility for collecting data for the study, doing statistical analysis, analysing qualitative interviews and writing the article. Arlene Arstad Thorsen has together with FS done the statistical analysis, discussed results of analysis, contributed when formulating result section and discussion section of the article. Arne Rehnsfeldt and Christina Forsberg has together with FS discussed results of statistical analysis, contributed when formulating introduction, result and discussion section of the article. All authors have finally

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discussed as a whole the article several times before submitting it to Scandinavian Journal of Caring Sciences.

Ethical approval The Regional Committee for Medical Research Ethics in western Norway (reg. no. 2008/13776 CAG) and the Norwegian Data Protection Agency (reg. no. 20522/2) approved the study. Also, wards within the psychiatric hospital in which the qualitative interviews were collected approved participation. All participants signed written consent and were informed verbally and in writing that they were free to withdraw from the study at any time. Background information and written consent from the participants were stored separately.

Funding There is no funding for this study.

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