Аспекты достоинства в семьях, обеспечивающих уход за лицами, страдающими множественным склерозом.

Introduction

Background

This study focuses on dignity and violation of dignity in family caregivers when a person is affected by the disease Multiple sclerosis (MS). MS affects functional ability in cognitive, emotional, motor, sensory, or visual areas and occurs as a result of a person’s immune system attacking their brain and spinal cord. It is estimated that over 1.8 million people have MS worldwide. It is most common in young adults and in females. MS can improve or stabilize when treated with medicines early in the course of the disease, and treatments will be different for each individual depending on the severity of the disease and symptoms (World Health Organization, https://www.who.int/ , August 7, 2023 ). The theoretical framework of the study is based on the caritative theory of caring by K. Eriksson ( 2018 , 2022 ).

Literature review

Banitalebi et al. ( 2022 ) investigated the effect of a self-management programme on care burden and self-efficacy in family caregivers of people with MS. The authors conclude that providing self-management programmes to caregivers of people with MS is an effective approach to reducing their burden of care and increasing their self-efficacy. In a quantitative study by McKenzie et al. ( 2015 ) the authors report that care partners of people with MS have substantial physical and psychological health concerns and experience an adverse impact on employment. They state that future research should evaluate how to mitigate the adversities of caregiving and evaluate positive aspects of the role. Tehranineshat et al. ( 2020 ) aimed to identify family caregivers’ experiences at the first hospitalization of their close family relatives. The authors found that a peaceful environment, the need for continuing full support, and religion-based coping strategies were important for the family caregivers. They argue that the findings can be used to develop support programs that address family caregivers’ problems and needs to assist them in accepting and coping with the conditions of their family relatives. Landoni et al. ( 2000 ) state that psychological support could help relatives of persons with multiple sclerosis not only with the emotional load resulting from the disease, so that they do not feel alone in the patient’s everyday care, but also with their own emotional management, to give them a listening space for their distresses and fears. In a study of young caregivers of single parents diagnosed with MS, Bjorgvinsdottir and Halldorsdottir ( 2013 ) found that the participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance, and their caring responsibilities led to severe restrictions on their lives as their parents’ disease progressed and they lived without a true childhood. In another research area Vatne et al. ( 2021 ) state that caregiving for family members of patients at risk of suicide is linked with a holistic view, which according to K. Eriksson ( 2018 ) has various interacting dimensions. The authors further state that when one embraces and meets suffering with consolation, family members’ hope can be strengthened. According to Uccelli ( 2014 ) MS has a significant impact on families, influencing their wellbeing and quality of life, often creating psychological stress in each family member and negatively affecting family functioning in general.

Research has focused on dignity in several patient groups, but not largely on persons with MS and to even a lesser extent on their relatives, as is seen in the literature review. Because of this scarceness of research, we found it important to carry out this study.

Aim

The aim of this study was to get a deeper understanding of how family caregivers of persons suffering from multiple sclerosis perceive that their dignity is preserved or deprived in encounters with the sick family member, health care professionals and public authorities.

Theoretical framework

To guide us with the overall interpretation in arriving at a deeper meaning of the text (question 3), we made use of Eriksson’s dignity theory (Eriksson, 2002 ; K. Eriksson, 1988 , 1994 , 1996 , 2006 , 2013 , 2018 ), Nordenfelt’s ( 2004 ) four kinds of dignity, Jacobsen ( 2009a ) taxonomy of dignity, and Pullman’s ( 2002 ) human dignity and the ethics and aesthetics of pain and suffering. As well, we made use of philosophical texts by Levinas ( 1996 ), Kemp ( 1992 ) and Aarnes ( 1998 ) as theoretical perspectives. Despite ontological and empirical differences, one shared feature is the understanding of dignity as a dualistic concept (Tranvåg et al., 2016 ).

A core point in K. Eriksson’s ( 1994 ) caritative theory is the phenomenon of dignity. Eriksson states that dignity deals with caring’s most fundamental value. This means unconditionally affirming the patient’s absolute dignity as a human being. Man’s absolute dignity consists in the fact that he was created as a human being, that he holds the human office (K. Eriksson, 1996 ). Human dignity means inner freedom and a responsibility for one’s own life and for other persons’ lives. In its deepest sense—coherent with the meaning of life—a person’s primary task is to be able to minister, to exist for another person (K. Eriksson, 1994 , p. 17).

This is in line with Pullman ( 2002 ) who states that “suffering with” another can help to maintain and restore dignity of the relationships involved, even as it preserves and enhances the dignity of patient and caregiver alike. Pullman ( 2002 ) also claims that the duties to relieve pain and suffering are clearly matters of moral obligation, as is the duty to respond appropriately to the dignity of other persons. The author further claims that the life worth living is both morally good and aesthetically beautiful. Pullman further argues that the term basic dignity carries connotations of something objective and absolute. In line with this, K. Eriksson ( 1994 ) argues that man experiences his absolute dignity when he can complete his task as a human being. This is how dignity is connected to the human office.

Dignity is also referred to as a state in a more relative or subjective sense. This concerns the value that people attribute to themselves, partly the value that is attributed by others or based on a system of norms (K. Eriksson, 2018 ). Edlund ( 2002 ) states that relative dignity is influenced and shaped by culture and society, which means that dignity can be changed and destroyed, but also restored.

Jacobsen ( 2009a ) presents a taxonomy of dignity, identifying two forms of dignity—human dignity and social dignity. In her study Jacobson refers to different forms and a short history of dignity that has three main episodes. In the first episode authors as Bayertz ( 1996 ), Dales ( 1977 ) and Kristkeller ( 1948 ) are highlighted. These authors are of the opinion that man has dignity because he has been made in the image of God, and this distinction marks the human species as superior to the rest of creation. This meaning is consistent (evident) with Eriksson’s view that man’s absolute dignity consists in the fact that he was created as a human being, that he holds the human office (K. Eriksson, 1996 ). In the second episode referred to by Jacobsen ( 2009a ), dignity resides in social hierarchy and is closely tied to a system of rank. The third episode introduces the Kantian conception of dignity as grounded in the quality of rational agency—the ability of individuals to make moral choices and thus to self-govern (Dillon, 1995 ; Gaylin, 1984 ; Meyer, 1987 ; Shell, 2003 ). In conclusion, dignity is thus an attribute that pertains to humanity as a collective entity, one that attaches only to certain classes of persons, and a characteristic inherent in all individuals (Jacobsen, 2009a ). The social dignity delineated by Jacobsen ( 2009a ) is comparable to the relative and subjective dignity delineated by K. Eriksson ( 1994 ).

Nordenfelt ( 2004 ) has written substantial texts about dignity and presents four kinds of dignity: The dignity of merit depends on social rank and position. The dignity of moral stature is the result of the moral deeds of the subject. The dignity of identity is tied to the integrity of the subject’s body and mind. Menschenwürde pertains to all human beings to the same extent and cannot be lost as long as man exists.

This last kind of dignity is in line with Jacobsen ( 2009a ) human dignity and K. Eriksson’s ( 1994 ) absolute dignity.

Levinas ( 1996 ) argues that ethics comes before ontology and is associated with the external and with that which is absolutely other than oneself. Referring to Levinas, Foss et al. ( 2014 ) further elaborate that the other is the individual person, and a singularity of this kind cannot be incorporated into something universal through understanding and consciousness. Therefore, separation is interpreted as the core substance of responsibility, and separation demonstrates a distinction between the ethical, pre-ontological relation and ontology as understanding (Foss et al., 2014 ). With reference to the present study, the ethical dimension relates to the participants and their witnesses (extracts), while ontology is related to the overall interpretation and the deeper meaning of the text. Our preunderstandings are accounted for by presentation of a review of the literature and by reference to the study’s theoretical perspective (cf. Foss et al., 2014 ). The overall themes and interpretations were confirmed in the research group.

Methodology

Overall design

A hermeneutic approach inspired by Gadamer’s et al. ( 1960/1999 ) hermeneutics was employed, in which the uniqueness of the individual is seen as fundamental. A basic principle or tenet is understanding. To reach understanding, going back and forth from the part to the whole and back again to the part, called the hermeneutic circle, is significant. In the interpretation process, the parts and the whole illuminate one another and make each other explicit (Barbosa da Silva & Andersson, 1993 ; Gadamer, 1977 ; Nåden, 2010 ; Nåden & Bjørk, 2011 , 2023 ; Nåden & Eriksson, 2000 ).

As Gadamer et al. ( 1960/1999 , p. 312) points out, understanding is applying something universal to a particular situation. In other words, Gadamer’s attention is focused on understanding the subject matter as a universal conception (Foss et al., 2014 ; Gadamer et al., 1960/1999 ).

Furthermore, Gadamer asserts that Bildung, as rising to the universal, is a task of man, which requires sacrificing particularity for the benefit of universality (Gadamer et al., 1960/1999 ; Nåden, 2010 ). Acquisition (Bildung) is therefore necessary to gain universal knowledge in the interpretation process.

We have strived towards this goal during the process and tried to permit ourselves to assume the mode of slowness and silence in the hermeneutic position (Nåden, 2010 ; Nåden & Bjørk, 2023 ), to allow the subject matter to present itself “in all its otherness” (Gadamer et al., 1960/1999 ). Being in these modes, we have been better able to distinguish the essential from the non-essential and thereby experienced the possibility to wander down the hermeneutic spiral to depths that can be discovered (Nåden, 2010 ). Bergbom ( 2007 ) presents similar thoughts and declares that to be a spectator consists of being completely present and outside oneself, and to a certain degree forgetting oneself in the focus on what one is seeing.

Erdal et al. ( 2023 ) ask the question what significance do our preconceptions have for our abilities to observe in a field? The authors further claim that the concept of positionality is gaining meaning in line with increased focus on how knowledge is developed and legitimized. The researchers’ academic education and affiliation are therefore important for the research being carried out.

Our preconceptions and positionality are thus governed by our academic background, which we have explicitly explained. It is also governed by our choice of literature on dignity.

Participants and data collection

Eight participants took part in the study, five women and three men. Their ages spanned from the thirties to the seventies. Most of the participants were middle-aged. Their relationship to the person with MS was: Four of the women were wives and one woman had care responsibilities for two people, a sister and a daughter. Among the men, two of them were spouses and one was a cohabitant. The participants were voluntarily recruited through an advertisement in the MS patient’s membership magazine.

Research interviews were conducted. Key questions in the interview guide were: How did you become a relative? How is your life now? How would you like your life to be? What prevents you from having it the way you want? What can you do yourself to overcome such obstacles? What could/should the healthcare system (or others) do for you so that you and your family could get better? What do you associate with the word dignity? Can you give examples of dignity and indignity? Is there anything else you’d like to talk about that we haven’t touched on yet?

Before starting the interview section, the participants were informed about the study and provided written consent to participate. The participants decided where the interviews would take place. All participants chose to be interviewed in their own homes.

Although the researchers had a guide to follow, the interviews were performed in the nature of conversations, in which the participants were free to elaborate on their views and opinions in their own way. Even though the researchers were guests in the participants’ homes, we sought to create a pleasant atmosphere characterized by trust and respect. The interviews lasted for 1–1½ hours. We used audio recordings during the interviews, and these were transcribed verbatim by a transcriber who signed a confidentiality statement.

Analysis and interpretation

Our compass and guide in the interpretation process were Gadamer’s hermeneutics and the pursuit of the study’ purpose. Gadamer poses the important questions: 1. What does the text speak about? 2. What is the meaning of the text? 3. What is the deeper meaning and context that is conveyed through the text? (Gadamer et al., 1960/1999 ; Sæteren, 2006 ).

The analysis and interpretation started by reading the interviews several times to get an informed overview of what they were about. During this work we made notes in the margin of the interviews. The first author did the initial analysis. The research group met to discuss the initial analysis and important quotations. After the first revision the research group met again and discussed the analysis. Finally, the themes were determined. The result chapter was finally read and approved by the participants of the research group.

Detailed description of the analysis and interpretation process: Possible topics were highlighted, and sequences of text were marked. This process was about the first question by Gadamer.

We had a dignified celebration, and the most touching thing was that a multi-disabled friend in her forties from the nursing home made a speech to her. It was touching. … We felt it was right to give our sister a “here-and-now experience”. (3)

Thereafter we searched for specific themes. Gadamer emphasizes the importance of staying in dialogue with the text. An additional systematic processing was conducted whereby both worthy and unworthy care of family members were identified.

We collected all statements that talked about roughly the same issue one after the other on separate sheets. An illustrative example is the above where the family arranged company for their relative who turned 50. This process relates to question 2, where the meaning of the text was conveyed and illuminated by the overall theme Preserved dignity through doing good for the other.

Ethical considerations

Since this research did not ask for health-related information from the participants, it was not necessary to get approval from any ethical committee. The participants joined the study voluntarily, based on their own desire. All personal identification was separated from the interview text, and the participants were guaranteed confidentiality. They were informed of the possibility of being able to withdraw from the project whenever they wished. A contract was signed between one of our affiliated institutions and a company that did transcriptions, ensuring the anonymity and confidentiality of participants.

Results

The results show both preserved dignity and violated dignity in family caregivers of persons with multiple sclerosis. Results also show what family caregivers do themselves to preserve their own dignity.

The following main themes emerged through the interpretation of the data:

Preserved dignity: Doing good for others; Compassion with and bearing burdens of the other; Being reconciled with life.

Violated dignity: Violated dignity caused by insensitive health care professionals; Violated dignity caused by public authorities, health care systems and friends.

Preserved dignity through encounters with sick family members

Doing good for others

Doing good for others is revealed in different ways. One family caregiver states that commemorations of life events are important, but also reflects on how to do it right. When the family caregiver’s sister with MS turned 50 years old, she was not able to eat, but the family decided to arrange a party at the nursing home. They ordered food, arranged flowers and nicely set the table: We had a dignified celebration, and the most touching thing was that a multi-disabled friend in her forties from the nursing home made a speech to her. It was touching … We felt it was right to give our sister a here-and-now experience (3).

Another situation that illustrates this point of view is when the family caregiver took her adult daughter suffering from MS for a holiday abroad together with her brother: My daughter read professional literature, and I read criminal literature. We went hiking and swimming in the sea. Supposedly, we would not do this if she had been healthy. I think we have got kind of a different relationship (3).

We interpret situations as these as providing an experience of dignity for the person with MS as well as for the family caregiver.

A family caregiver states that she feels she might be useful for others: I feel that, in a way though, I can be useful for others. It is a good feeling to do good for others. It makes my everyday life very good (7).

Another family caregiver displays, throughout the whole interview, a wish to do the best possible good for the partner and her family. He likes to travel and visit other places, especially in the southern European countries, not mainly for his own benefit, but for hers: Travelling is mostly because she gets a lot better when she is in the South. It is all right to see her when she walks. I almost can’t keep up with her … It’s good for me. I’ll be so … it’s so uplifting with those trips, to experience her in such a state. Oh, it is good (6).

It is a true and rewarding pleasure to help others. The experiences of the family caregivers taught them to take care of themselves, to overcome and preserve their own dignity. As learned from the above, they do this in different ways.

Compassion with and bearing burdens of the other

Living together with a person suffering from MS leads to increased compassion: The fact that my husband is suffering from MS has brought us closer together. Many couples in our situation struggle to avoid slipping apart. But we experience that in the periods when he has attacks and is in poorer shape strengthens us, in a way . She further states: I try to resist and try to be positive because I realize that no matter how bad it seems to me, it feels worse for him. I try to be strong … . But I also must show my weakness. … I get confirmation when I care and through my engagement in what happens to him (2).

Another voice of compassion is the following: I think that my tiredness is mostly due to all my thoughts, that I want everyone to feel good and I think so much about it . … It eats at me a little bit . The participant bears the burden of her husband, saying that I am probably most sad on his behalf (2).

Showing compassion with and doing good for the sufferer seems also to enrich life for the next of kin even though feeling weakness is an accompanying factor.

Being reconciled with life

During the time they have responsibility for a person with MS, many family caregivers have become realistic and reconciled with the situation. As time passed, they received a kind of peace. One of them says: I feel I’ve got a completely different calmness. I do not fear the future. I think about it sometimes—perhaps it happens that he will need a wheelchair. Then we must deal with it when it happens. I cannot bother now. I try to be positive. I feel that I have less fear of the future now than before (2) . The same person is concerned about their children, but she and her husband are involved in everything: Sometimes it takes a little bit longer, and sometimes we must ask for help. That is the worst. I like to help others but also others like to help. We have been very lucky; we have a lot of family around us . The family caregiver elaborates on the time she got sick and couldn’t work. She felt she was not worth anything. She had three children born close to each other, and she wondered how she should manage to help both her sick husband and the children: It was a tough time for us. I got a lot of help turning the situation into a positive one, to decide and acknowledge whether I should work outside the home, in which event we wouldn’t be able to make provisions for the children.

All these positive attitudes help to both preserve their dignity and feel respected. Encounters with family and friends helps to preserve family caregivers’ dignity. In various ways, the caregivers reflect on it. One of them states that most of the family and friends question how she behaves and relates in an understanding manner, for instance: when we are painting the house and fixing up, I feel I gain that dignity. They come and help and say: “You shouldn’t do this, you’ll get tired”. That feels good (2).

One of the caregivers says that he is an optimist. I’m not going around thinking that her sickness will worsen. So, my plans are based on the way she is functioning at the time, that the illness is stable (5) . He continues: Everything indicates that the situation will continue to be fine, and that the illness will not worsen. We are optimistic and make all plans based on this. If anything should happen, we will take it from there … We very much agree on this. Because it is sort of something not to worry about in advance . Because it’s not certain that problems will arise at all.

Another participant, who had a difficult earlier life, says that You get no more than you can bear … I think that is a fantastic expression (7).

One young wife of a person with MS says her thoughts about the future are positive: But I do have a realistic thought that lies there; it’s that the future is unsure. Then I think the future is uncertain for all of us. At the same time, I think if there is something we really want, I do not think we should put it off for many years. I am very positive toward the future . … If you’re going to be scared your whole life, life goes by without you being present (2).

By doing good for others, having compassion for family members and being reconciled, family caregivers stood upright in a dignifying way through both adversity and prosperity.

Violated dignity caused by insensitive health care professionals

Humiliation caused by healthcare professionals has many faces and expressions and is grounded in both poor knowledge and indifference. The sister of a person with MS who is a resident of a nursing home and who has lost the ability to speak, says, we have lost her, but she is still alive. She exists (3).

When her sister visits her, the healthcare professionals talk in a way that I have become quite tired of: Now you must enjoy yourself. Every time I visit her, we should “enjoy ourselves”. If there is anything I do not experience, it is having fun. Because this, in a way, is a duty. I think, what is having fun? For me it is being together with somebody and enjoying communion. I am together with her, but communion is not there. We cannot share a bottle of wine, and we cannot talk about anything. We just are there. So, the expression “you have to enjoy yourself … ”!

The same person continues to talk about health care professionals: There is one ability I do not have; I can’t stand “small talk” with healthcare personnel whom I can’t communicate with. What should we say? It is just like talking to a cat … one does not talk to the cat! But there are very many health personnel in nursing home care who are very clever in chatting.

Indifference and insensitiveness come to the fore through acts of omission on the part of physicians in hospital when they do not encounter patients and family caregivers in an appropriate way in their suffering. A family caregiver talks about the time when her husband was diagnosed with MS. The day before the scheduled meeting at the hospital, when they were to be informed of the test results, the family caregiver received a call from the hospital saying that they had to change the date because the results of one of the fourteen tests were not ready. The patient’s wife said that they wanted to uphold the scheduled meeting to be informed of all the other results, but the physician believed it was meaningless. The family caregiver continues:

Maybe it is meaningless for you, but you have received the results of most of the tests. It is not meaningless for us. It is all about our lives. We want to come to the scheduled meeting’. He said “ok”, but he did not meet us. A rather young physician came to meet us, who obviously knew nothing. The last result was also ready, so they did not have to meet us again. We were told what we expected to hear. (8)

The family caregiver meets no compassion and no engagement when asking the physician about concerns in terms of changing lifestyle or treatment that can give her husband mostly good days and thereby preserve his quality of life. The physician said: There is no point in talking about it, because there is nothing that helps (8) . Another conclusion that the family caregiver has come to is that hospitals and the healthcare system are not there to help sick people, but to diagnose and carry out treatments: If they do not have a satisfactory treatment for a diagnosis, then you feel you are sand in the machinery and not a patient or a family caregiver.

One family caregiver thinks that health personnel ask disgraceful questions, and she gives an example: You have heard that her previous husband has a new girlfriend. How do you think it will work out if he moves in with her? (3).

Violated dignity caused by public authorities, health care systems and friends

Family caregivers talk about fights with and humiliation by different public authorities. These seem like endless struggles with institutions where services are expected. It seems like these service institutions are working against rather than with patients and family caregivers. The wife of a patient says: A huge challenge we have experienced is the encounter with the Labor and Welfare Administration (LWA) (1) . Another family caregiver says that from the viewpoint of the aid center, the customers will not be going anywhere. Therefore, there is no hurry to get the equipment delivered. The outcome was often something quite different than what we had asked for. Then you often get the message: “Yes, but try in six months, and then we can adjust it if you still think it does not work”. … The equipment always came from six months to a year after the problems started (8).

The same participant continues: It was a huge fight to have home nursing coming every morning and every evening. There have been many fights with the municipality’s homecare. Even if we were to go to the physician early, nobody came, even if we gave written and telephone messages three weeks beforehand and repeated it every week.

The frustration with the LWA is shown clearly in the following example where a wife of a person with MS says to her husband: I must call LWA , and her husband answers: No, I can’t stand it, because at that place there are only negative things all the way (1) . The same family caregiver experienced that the waiting period for granting basic income and auxiliary income was 26 weeks: Now we have sent a complaint, but we have no hopes … Sometimes they (people working at LWA) can be seen as directly rude in terms of the way you are welcomed and received. I have experienced it earlier . In a telephone call with LWA, the family caregiver said: I can’t stand to talk to you because I have become so annoyed.

Even when the staff at the LWA office follow the rules and regulations, they might be hurting and humiliating to the caregiver as well as to the person suffering from MS. The following story exemplifies this: When my husband went over to 50% disability pension, then I also received less. They lowered my pension as well, by 5000 crowns a year. … This was correct according to the LWA office. There are many weird laws and rules! (1).

The same family caregiver becomes frustrated and powerless because she is not being listened to. She continues: And then I feel that I have too little knowledge about matters, for example about what rights he has, and we sure do not get any information from the LWA, I feel . The same wife becomes resigned but feels that it does not help to persevere; I become powerless because it is almost as if I shouldn’t bother to apply to LWA for social benefits, because it does not lead to anything.

Family caregivers experienced fighting with the healthcare system. It seems that some health professionals show little understanding of the situation of the family caregivers and their loved ones. The examinations of patients take a long time, and patients might not be trusted. One family member said: My husband underwent MR-examination, and a long time went by before we received any results. It was a shock to know that he has MS, and it took a long time before he was called in for a new MR. I was so annoyed at the health service because it took so long (1).

Many people turn away when they see a person with MS sitting in a wheelchair, and they cross the street, for instance. I feel that people withdraw (2).

Another family caregiver states: Friends have withdrawn, some of them at least. He (a friend) would prefer to be home: ‘No, not tonight, another time (1) . The family caregiver further states: Friends of ours that we had a standing deal with have now suddenly disappeared … Especially some earlier friends I almost never hear anything from (1).

Authorities that are supposed to help people in vulnerable life situations work against them. Instead of showing a dignity-preserving attitude towards the person in need of help, they show an opposite attitude, which humiliates them.

Theoretical interpretation and discussion

The results show that the dignity of the family caregivers of persons who are suffering from multiple sclerosis is both preserved (confirmed) and violated. They preserve (confirm) their own dignity through doing good for others, showing compassion with the other, and through a positive attitude which includes reconciliation with the life situation. Their dignity is violated when healthcare professionals and others do not act in a respectful manner.

Preserved dignity

Doing good for others

K. Eriksson ( 1995 , 1996 ) states that the human being’s dignity is the most fundamental value, and that it is unconditionally necessary to confirm the absolute dignity of the human being. The author further states that the person experiences absolute dignity when she can fulfill her responsibility as a human being, which is when she can serve and exist for another. We can understand this meaning in a more general way, which is linked not only to specific actions or situations, but to a more persistent feeling of wanting and doing good. Responsibility for the other becomes a natural matter of course.

This fundamental value can be found in the family caregivers’ doing good for the other, in this case, for those persons suffering from multiple sclerosis. In doing good for their wife, husband or other relatives, they not only confirm (preserve) the other person’s dignity, but their own dignity as well. This might be related to Nordenfelt’s dignity (Nordenfelt, 2004 ) of moral stature which is the result of the moral deeds of the person. K. Eriksson ( 1996 ) refers to Pico, who states that freedom is the basis for the human being’s dignity. In her text, K. Eriksson ( 1996 ) also refers to Lindborg ( 1991 ), who believes that what can be called human dignity implies that man himself has an ability to shape his life and his being. This is clearly shown in different ways in the results, where people decide to do the best for their next of kin, as when a mother took her grown-up daughter suffering from MS on holiday abroad. The same is clear when a family caregiver states that it is a good feeling to do good for others. This is compatible with the idea that man experiences his absolute dignity when he can complete his task as a human being, which means serving and existing for another human being (K. Eriksson, 1996 ). K. Eriksson ( 1995 ) relates to E. Levinas ( 1988 ) thought that it is when we see the face of the other, that ethics becomes a reality. We might also apply Levinas’ (Foss et al., 2014 ) use of separation when he states that separation demonstrates a distinction between the ethical, pre-ontological relation and ontology as understanding. We clearly notice the ethical dimension in the story about celebrating a sister’s fiftieth birthday. The ethical ideal in the caring relationship might be expressed by inviting the other as a “guest of honor” (K. Eriksson, 1995 ) and thereby confirming the absolute dignity of the human being. This also reflects human dignity, which Jacobsen ( 2009a ) speaks of as an abstract, universal quality of value that belongs to every human being simply by virtue of being human. Pullman ( 2002 ) refers to the Universal Declaration of Human Rights, where the appeal is to the “inherent dignity” of every human person. This is a universal and inalienable moral quality.

Compassion with and bearing burdens of the other

The importance of compassion with the sufferer is present in the results. K. Eriksson ( 1992 , 2006 ) states that compassion is the source of all true caring: So much compassion, so much caring. Further, the author states that compassion presupposes courage, the courage to assume responsibility and the courage to sacrifice some of oneself. This sacrifice is not made with the thought of personal gain but because one truly wants to do something for the other (K. Eriksson, 2006 ). This is shown in the results by the woman who tries to be positive and who realizes that no matter how bad it seems for her, it feels worse for her husband. She feels both strong and weak, and therefore she has courage to assume responsibility for the other. This is compatible with K. Eriksson ( 2006 ) and Schopenhauer ( 1905 ), where compassion becomes the motive for one’s actions, while the idea of one’s own fortune moves into the background replacing the will to help where help is needed. This text about compassion might be linked to K. Eriksson’s ( 1994 ) words, stating that dignity deals with caring’s most fundamental value, which is to relieve the other person’s suffering. Compassion might be interpreted as sensitivity to the pain and suffering of the other. Without showing compassion for the suffering human being, it might be difficult to offer dignified care. In this manner there is a connection between compassion and dignity. Eriksson further refers to Schopenhauer, who claims that one experiences the other’s suffering as one’s own, and compassion becomes the motive for one’s actions. This sensitivity and tenderness prepare us to struggle with the suffering of the other and to try to alleviate it, according to K. Eriksson ( 2006 ), and this is visible in the present results. To show compassion is a signal and a confirmation that shows that the family caregivers care for and are engaged in what happens with their next of kin in bad periods of their disease (participant 2). This also illustrates, according to K. Eriksson ( 2006 ), that compassion is the core of mercy. Further, the author expresses that compassion is also the source of all true care, and states: So much compassion, so much caring ( 2006 ). Prior ( 1989 ) argues that compassion is the emotion that causes us to act well towards others in need. The author further states that man needs both generosity and practical wisdom, as well as compassion, to act well. Reid ( 2012 ) refers to Goodridge and Cornwell ( 2008 ) and connects compassion and dignity when arguing that compassion and dignified care are about seeing the person in the patient and responding accordingly. This will also be the case in relation to family caregivers—seeing the person in them. Chochinov ( 2013 ) argues that caring implicates our fundamental attitude towards patients, and our ability to convey kindness, compassion and respect. von Post ( 1995 ) also argues that dignity is related to compassion.

According to Edlund’s ( 2002 ) research, both kindness and respect relate to dignity. Prior ( 1989 ) argues that compassion engages one’s virtues of benevolence, generosity, and practical wisdom that causes one to act rightly. The same author refers to the Good Samaritan who saw the victim on his way. To experience compassion is thus to be touched where one lives. A similar kind of compassion is articulated by a participant in this study saying that no matter how bad it seems to me it feels worse for my husband.

Being reconciled with life

Reconciliation and love are one and the same according to K. Eriksson ( 2006 , 2018 ). Fredriksson and Lindström ( 2002 ) and Fredriksson ( 2003 ) state that attributing meaning to one’s suffering and re-establishing vital parts of himself hidden by the façade makes reconciliation possible. We can trace this meaning back to the family caregiver who said that she had a completely different calmness and did not fear the future after “being way down”. Though unlike this story, it is also the situation of the husband who says that he is an optimist, and his plans are based on the way his loved one is functioning at the time, that the illness is stable, and if anything should happen, he and his wife will take it from there. In another setting Sherman ( 2019 ) states that adult children of cancer patients report benefits of transformed relationships with sick parents, valuing the relationships with other family members, altered life priorities and personal development. Referring to Eriksson, Bergbom et al. ( 2021 ) state that reconciliation means to create or transform an entity that includes evil in a new meaningful wholeness or holiness. The authors further state that a reconciled person enters a renewed communion with others and experiences liberation and freedom to become . This theoretical text is in line with the words of the young participant who says that she got a lot of help in turning the situation into a positive one. It also helped the family caregiver and the person suffering from multiple sclerosis to preserve their dignity and feel respected. This is in line with Eriksson’s text referred to by Bergbom et al. ( 2022 ), that man experiences absolute dignity when fulfilling man’s task as a human being, i.e., serving and existing for another human being.

Ziakova et al. ( 2020 ) research on persons suffering from multiple sclerosis shows that accepting illness and changed identity impaired by multiple sclerosis was the step that the participants considered to be important for reacquiring the sense of dignity. Lohne et al. ( 2010 ) research on persons suffering from multiple sclerosis reveals that patients were invisibly captured in fatigue and experienced that if they did not ask for things they would not receive anything.

Violated dignity caused by insensitive health care professionals, public authorities, healthcare systems and friends

The results also show indifference and insensitiveness from healthcare personnel through acts of omission, not encountering patients and family caregivers in an appropriate way. Thereby they deprive the dignity of those that they intend to help. Moreover, the healthcare personnel violate their own dignity. According to K. Eriksson ( 1996 ) this happens when the human being acts in a way he or she does not want to behave. The author further states that a human being who does not take responsibility for his fellow human being experiences guilt and abandons some of his own dignity. Levinas writes that the relationship between myself and the Other is asymmetric: the Other obliges me, and I have responsibility for the Other (Kemp, 1992 ). Part of the results from this study shows that this does not always happen. Jacobsen ( 2009b ) argues that dignity violation in health care occurs, among other things, through processes of rudeness, indifference and condescension. Accordingly, it will be difficult to live up to Levinas’ words that the ability to be touched by the vulnerability and suffering of others is a prerequisite for humans to assume the responsibility that has been given to us and is already there (Aarnes, 1998 ). Martinsen states that compassion, mercy and trust are our natural human reactions to the appeal for help from others. These basic conditions are dependence, vulnerability, loneliness, the fragility of life and death (Henriksen & Vetlesen, 2001 ; Martinsen, 2012 ). Responsibility is a core concept in Levinas ( 1996 ) philosophy, and he says that we cannot refuse the responsibility for the other person. Being abandoned when in suffering is interpreted as the opposite of the meaning of responsibility, in Levinas’ perspective (Nåden et al., 2013 ). Being invisible may be experienced as being overlooked or rejected instead of being understood (Lohne et al., 2016 ). Levinas’ thinking is driven by the notion of infinite suffering reaching further than oneself, to the other as an ethical authority (Kemp, 1992 ). Family caregivers’ encounters with health professionals, public authorities and healthcare systems are not always in line with Levinas’ message when they behave in an undignified way and do not listen to the family caregivers. Eriksson argues that the person’s absolute dignity is given in that she has received a high office, which means a call to serve. A person experiences absolute dignity when he can fulfill his responsibility as a human being, i.e., he can serve and exist for another (K. Eriksson, 2006 ).

Further, K. Eriksson ( 2013 , 2018 ) emphasizes the importance of the ethical mantra in caring for the suffering human being: “I was there, I saw, I witnessed and became responsible”. We acknowledge from the results that health professionals are physically present, but from time to time, they are not seeing. Therefore, they do not take responsibility for the other human being. This can be related to the indifferent attitude of health professionals when they talk to family caregivers, when they use phrases such as “now you have to enjoy yourselves”, when the realities are not conducive to this, or when they apply a top-down attitude towards the person suffering from MS even when the spouse is nearby. Instead of meeting them with respect and humility, it leads to offence not only for the sufferers, but also for the family caregivers. Man does not always dare to embark on the journey with the other, because this requires the helpers to have abilities at the levels of doing, being and becoming (Nåden, 1998 ; Nåden & Eriksson, 2002 ; Nåden, Foss, et al., 2018 ). It becomes an offence and self-effacement not to be responsible, because the chosen one, in our case the healthcare worker, is the only one that can answer the appeal. The responsibility lies dormant—compassion and care are absent. The movement of responsibility towards the other might be gone.

Bergbom et al. ( 2021 ) refer to K. Eriksson ( 2013 ) who argues that to really see, think, understand and have knowledge of something requires fidelity to the true, the beautiful and the good. In line with this statement, K. Eriksson ( 2013 ) brings knowledge together with light. It is with the help of light, which Eriksson describes as Claritas, that we see, and seeing leads to insight. Eriksson ( 2002 ) further states that a person with Claritas is driven from within and acts in freedom and inner harmony. In line with these statements, Claritas should thus become a possible facilitator for the truth, good and beauty in caring science and in care (Nåden, Bergbom, et al., 2018 ). These statements might be overarching thoughts and leading guides in the care of all patients, which is visualized in the results demonstrating dignified care of persons with multiple sclerosis and their family caregivers.

Strengths and limitations

The informants themselves were given the choice as to where they wanted to be interviewed. The strength of this study is that all participants invited the respective researchers to their own homes to be interviewed. We believe that this created a mutual trust between the parties which led to a meaningful and rich data material. One limitation might be that the participants were not sent an interview guide in advance, and thus did not have the opportunity to think through the different areas for discussion.

Conclusions

The overall interpretation process in this study was guided by Gadamer’s hermeneutics, Eriksson’s dignity theory and philosophical texts by Levinas.

The study shows that family caregivers of persons living with multiple sclerosis experience that their dignity is both preserved and violated in encounters with healthcare professionals. They preserve their dignity by doing good for their loved ones, bearing their burdens and when they become reconciled with life. The results emphasize the importance of helping and supporting the person who is suffering, not only for the person receiving help, but possibly as much just for the person helping. Thus, both parties receive confirmation of their own dignity.

On the other hand, the family caregivers’ dignity is violated when being met by insensitive healthcare professionals. Based on family caregivers’ statements, one can interpret these as health professionals sometimes use indifferent language where the family caregivers feel that they are not taken seriously. They are also deprived of their dignity by public authorities, where the employees do not receive them in a polite manner. Lastly, friends of theirs withdraw.

Implications for practice

Family caregivers felt it was a natural pleasure to help their loved ones and bear the burdens these carried. During this time, they became realistic and reconciled with the situation and life. On the other hand, there were situations in which their dignity was violated due to insensitive health care personnel, public authorities and healthcare systems. It is therefore important to heighten awareness of these facts among healthcare professionals. Galvin ( 2021 ) points to existential resources that are up to the task of guiding the head, the hand and the heart of care, thereby addressing human existence (Nåden & Bjørk, 2023 ). It is therefore of importance that leaders continuously address the above concerns.

Biographies

Dagfinn Nåden is Professor Emeritus at Oslo Metropolitan University, Norway. He has a doctoral degree from Abo Akademi University, Finland.

Lillemor Lindwall is Professor Emerita at Karlstad University, Sweden. She has a doctoral degree from Åbo Akademi University, Finland.

Vibeke Lohne is Professor Emerita at Oslo Metropolitan University, Norway. She has a doctoral degree from University of Oslo, Norway.

Funding Statement

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

Disclosure statement

No potential conflict of interest was reported by the author(s).

Author contribution

Design: DN, LL, VL. Data sampling: DN, LL, VL. Analysis and interpretation: DN, LL, VL. Drafting the article: DN.

Author note

Former member of the research team, Tore Schjølberg, sadly has left this world. Schjølberg contributed to the data sampling process.

Data availability statement

The participants of this study did not give consent for their data to be shared publicly.

References

Associated Data

Data Availability Statement

The participants of this study did not give consent for their data to be shared publicly.