The 'care' in caregiving: the multiple sclerosis experience for the healthy family members.
Abstract: The present study seeks to analyze the meaning of experience lived by the relatives of a Multiple Sclerosis patient. The methodology employed is hermeneutical phenomenology based on the philosophy of Heidegger. The disease appeared to be experienced as an entity. The experience caused changes in family cohesion as well as at the level of empathy about the meaning of health

Key words

Multiple Sclerosis, family, caregiver, hermeneutical phenomenology, Heidegger
Article Type: Report
Subject: Multiple sclerosis (Physiological aspects)
Multiple sclerosis (Psychological aspects)
Phenomenology (Research)
Existential psychology (Research)
Hermeneutics (Research)
Authors: Bellou, Maro
Vouzavali, Foteini J.D.
Koutroubas, Anna
Dimoliatis, Ioannis D.K.
Damigos, Dimitris
Pub Date: 01/01/2012
Publication: Name: Existential Analysis Publisher: Society for Existential Analysis Audience: Academic Format: Magazine/Journal Subject: Psychology and mental health Copyright: COPYRIGHT 2012 Society for Existential Analysis ISSN: 1752-5616
Issue: Date: Jan, 2012 Source Volume: 23 Source Issue: 1
Topic: Event Code: 310 Science & research
Geographic: Geographic Scope: United Kingdom Geographic Code: 4EUUK United Kingdom
Accession Number: 288874182
Full Text: Introduction

Multiple Sclerosis (MS) is a chronic neurological disease of progressive nature and is considered to be an autoimmune disease of the central nervous system. Its etiology is yet undefined; its diagnosis can often be difficult and its prognosis uncertain. MS symptoms vary among patients and possibly for each one of them over time. MS symptomatology includes numbness, limited mobility, paralysis, muscle spasms, fatigue, dizziness, loss of bladder control, sexual dysfunction, visual problems, pain, cognitive impairment, emotional problems. MS cure is inconclusive. Uncertainty in prognosis combined with lack of effective cure pose a psychological and emotional challenge for both patients and the rest of their families (Coleman, Rath & Carey, 2001).

It is a fact of life that someone may have to take care of an infant, a small child or an elderly parent. But caregiving for an adult who suffers from a chronic disease is more or less unexpected. Family members are often forced to readjust their personal plans. It becomes necessary that they make the best of the newly presented realities of the chronic disease and redefine hopes and dreams accordingly. Therefore, the sole fact that one suffers from a chronic disease poses a direct threat of detriment to the lives of her healthy relatives (Kuyper & Wester, 1998).

The uncertain overall course of MS influences patient's caregivers in a way unparallel to other chronic diseases. Caregivers are not able to predict a relapse or the unfolding of the disease, or even the patient's functionality over the course of a day (McKeown et al, 2004). Life expectancy for a MS patient is not different from any non patient (Scheinberg, 1985), meaning that the caregiver's task may last over a lifetime. Relatives are concerned not only with their family member but also with the eventual impact of the disease on their own lives (Kuyper & Wester, 1998).

Apart from the fact that the burden resting on the MS patient's relatives is clearly established within literature data, one discerns a lack in research that describes the meaning of the experience of close relatives living with the patient. A profound exploration of the way relatives interpret and manage their experiences may very well pivot upon the drawing of guidelines that would enable health professionals to properly support MS patients and their families.

The study at hand seeks to address the experiences of MS patient's relatives. Its aim is to appreciate if and how much the presence of MS affects relatives in their everyday practices, and to grasp the meaning they attach to the reality of the disease with respect to their own lives. The methodology employed is hermeneutic phenomenology based on the work of Martin Heidegger.

Methodology

Adopting the method: The present study pursues the goal of a deeper understanding of the experience of MS for healthy members of the patient's family. This experience includes both their everyday practices related to caregiving for the patient, and their perception of the reality of the disease. In order to attain this goal, hermeneutic phenomenology has been adopted as the most suitable method for a more profound understanding of the experience lived by close relatives. This methodology is a branch of phenomenology rooted in Heidegger's philosophy (Benner & Wrubel, 1989; Koch, 1995; Leonard, 1994).

Hermeneutic phenomenology is a holistic approach since it seeks to study the individual within a situation rather than to isolate variables related to the individual, variables related to the situation, and then reunite the so-detached parts (Lazarus, 1978). Hermeneutic methodology ponders the meaning of the experience the way this experience is lived and attached to by the individual.

Family life becomes approachable by interviewing the family members. A person's experience as they themselves live it is a personal matter, but its meaning is available to others through interpretation (ohman & Soderberg, 2004). The researcher employing this methodology tries to understand and interpret the meaning of the experience by analysing the interviews of family members. Text interpretation means that someone can see something new in what, inside the text, is considered to be a fact and yet reveals possible aspects of existence in the world.

The interpretation process includes a systematic analysis of the entire text, a systematic analysis of its parts and then a comparison between both interpretations (Benner, 1985). In this way, it becomes possible for one to understand the entire text in relation to its parts, and inversely. It is a constant process of deconstructing into components and restructuring to an integral whole. In hermeneutical methodology the researcher is actively engaged in interpretation rather than a passive receiver of knowledge (Walters, 1995). Her interpretation comes from within the text because she places herself inside it (Weinsheimer, 1991). For that reason, it is important to provide the reader with quotes of the subjects, thus enabling their own understanding.

Participants: The research at hand was conducted with family members of a 37-year-old female MS patient who had been diagnosed with the disease one year before launching the research. Namely, it is a family with a recent experience of the diagnosis and of addressing the prospect of a chronic disease. The MS subtype under research here is the relapsing/remitting type, where the course is marked by periods of relapses and remissions of symptoms. The arising research question is: 'If and how much is the family system affected while the diagnosis experience is relatively fresh?'.

This particular family was selected because its members expressed from the beginning their eagerness to share and describe their experience of the situation that has been shaped by the chronic condition of their relative. Selection took place upon their visit to the attending doctor of their relative in a hospital, during which they were asked to participate in the research. The family members acting as subjects for this research are: the husband, the father and the two sisters of the female patient.

Data collection: Each one of the subjects was separately interviewed upon appointment, in a hospital office. The decision over the interview venue was their own, with no exception. Before conducting this interview, the subjects were given all necessary clarifications with regard to its aim, a full prior description of its process, and a chance to address their own questions about the proceedings. Then, each subject signed a consent form, and was reassured that withdrawal remained an option at any point in the process. Confidentiality was guaranteed by altering the name of each subject.

All interviews started with the general question: 'How is it to live with a relative with MS? Describe your experience.' The following questions resulted from the subjects' answers and were mostly of a follow-up character, such as: 'Could you give me an example?' The questions were semi-structured, enabling subjects to choose what to report with regard to their experiences. Other questions asked were: 'How do these experiences affect you as an individual and as a personality?' 'What skills do you use in caregiving for this patient?' 'What is the meaning of this experience for you?' Those particular questions were posed in order to elucidate both everyday practical issues and the way subjects reflect on and make sense of the situation.

The interview had no time restraints. It was completed when the subject had decided that everything that he or she had wanted to say was fully reported, given also that the researcher had no further follow-up questions. Upon completion, the subjects stated that they were feeling better and relieved. At a later date, all interview content was rigorously transcribed in expressed terms and was text formatted so as to be ready for analysis. Furthermore, all non-verbal communications during the interviews were diligently registered.

Data analysis

Interview content processing and analysis for each subject was handled by three analysts who made up the interpretation team. At first analysts worked independently and afterwards as a team. Team analysis helps in appreciating when the understanding of a phenomenon by interpreters facilitates the interpretation process and when it hinders (Chesla, 1995). The interpretation process included an initial analysis of the whole content resulting further to the analysis of the parts, and inversely. Throughout this circular process, interpretation of specific data was also cross-checked against the culture, beliefs and conceptions of each subject.

Interpretative writing started with abstracts of main themes that, in progress, were invested with the most pertinent quotes. This phase also saw the launching of the codification by main thematic categories, gradually enriched by subthemes. Every subcategory was based on similarities and differences of the meaning attached by the relatives to their experience.

Validity check

Given that literature lacks a well-documented description of evaluation criteria for hermeneutics, the validity of this study was established upon a constant cross-checking against the principles of hermeneutical philosophy and the method outlined in studies by Benner (1994). With regard to the sample and the analysis, evaluation criteria in phenomenological studies by Munhall (1994) were also taken into consideration.

A basic validity criterion is the presence of convergence. The value of convergence corresponds to the degree of conformity in interpretations suggested by subjects and the researcher. For this purpose, it was deemed important that the voice of subjects is 'heard' by means of quotes of their stories. Validity of the interpretative text was awarded when subjects reacted with statements such as, 'Yes, this is exactly what I meant'. In this way, both the researcher and the subjects are active participants in the interpretation process.

Findings and interpretations

Although overlapping, the thematic units can also be examined as independent meaning entities. The thematic units were separated into four categories: 1) The disease as entity, 2) Impact of MS on family members, 3) Family and the subversion of roles, 4) New mindset and the order of things. There now follows the thematic units in further detail.

1) The disease as entity

For the relatives, the disease appears to be a distinct entity which is distinguishable from the patient herself. It is described by the image of motion, is characterised by 'rhythm' and 'goes some steps further'. The disease appears to be flowing and evolving like every living being, independently from the will of the patient:

2nd Sister: 'Nothing stays at the same level, even if it takes on a slower rhythm, it will go some steps further, and this is the nature of the disease.'

Husband: 'It varies even at the same level, yet it changes. It seems that this thing is somehow evolving inside her. You see that it takes on other forms, it transmutes.'

Quite often, the family members report that the disease doesn't have a linear course. Its evolution presents fluctuations and is marked by different 'levels'. The relatives appear to perceive the creation of a new being that 'transmutes'; a being incompatible with their own reality.

They confront the disease as an independent being that they have to try to help destroy, each one in their own way. The disease appears to be experienced as an enemy that has penetrated the patient's body. Male family members appear to use military-like phrases, unmistaken in the following quotes:

Husband: 'I try to help us grapple with it.'

Father: 'It's just another condition, we will give the fight and it's going to be fine.'

Every battle presents opposing dispositions and represents the personal aspect of a war. What is remarkable here is that both men express their effort to subjugate the disease using the plural. It appears that the disease has become their experience too. They themselves are deeply engaged in the situation and, by assuming the role of 'protector' or 'saviour', they are ready to rally for the fight to master it. However, this fight of theirs appears to be experienced as a venture with multiple aspects difficult to deal with:

Father: 'the battles are numerous, the way I see it, they're not just one or two.'

Husband: 'and it's a fight against time.'

The disease takes on a specific form by means of the image of the wall; its unfolding tends to crush anyone near:

Husband: 'You fight to hold a wall that crumbles as times goes by. It slowly bends over you, but it can't do better than that.'

The wall is the element that draws a line between the disease as the adversary and himself pressing against it to prevent it from squashing him. The wall as a symbol expresses the idea of weakness, delay, opposition or limited situation (Circlot, 1995). The limits imposed by the wall are the line of defence, enabling the family to hold on at the same level, as clearly shown in the following quote:

Husband: 'What we're doing now is a line of defence, we try to hold on at the same level, so that thing doesn't fall further back.'

2) IMPACT OF MS ON FAMILY MEMBERS

All family members express their deep concern about the possible future under the light of the disease unfolding. The disease is characterised by an unknown course with an unpredictable impact. The relatives appear to have elaborated an image of the disease through their contact with other MS patients, as a representation of possible scenarios that may be played out in the future:

Husband: I've seen here [in the hospital] some cases in the hallway, people that don't walk well or people driven to other, worse brain conditions. Maybe ... all of that may happen.'

Every family member appears to experience his or her own personal sense of weakness, fragility and helplessness through the patient's disease. It is a situation that exceeds the limits of control that each one of them can have over things. Keeping pace with the disease, their weakness will be greater with regard to the help that they can actually offer to their relative.

Father: 'You reach a point where you raise your hands [in surrender] saying: "Now, I can't do anything anymore".'

This point is the limit of his possibilities; where he confesses his weakness and the passivity that he's obliged to adopt when confronted with the situation shaped by the disease. It appears that the situation is such that the power of will is inadequate before the unfolding of things. The sense of helplessness appears to be extended to the self-image of each of them, and the potential he or she has. This quote by one of her sisters is rather telling:

1st Sister: 'When there is that (the disease) ... that it is out of your hands to fix, to change it, you're a total zero, zero, zero'

There is something in the disease that appears to be broken and needs repair, in a figurative sense. Nonetheless, she cannot fix it. Her hands appear to be weak for a thing that is not tangible or a task that is not manual. It's out of her reach, out of her possibilities. The outcome is a sense of the self being flattened and equated to zero. In a way, it appears that the characteristics of the disease also extend over her.

3) Family and the subversion of roles

The disease as a fact appears to have caused changes in the family bonds. The roles fulfilled by each member in everyday family life have been modified. It is as if the patient, an adult woman of 37 years, has taken on the role of the 'child', who every family member needs to care for. The husband describes the changes that he experiences with regard to his family life:

Husband: '... some roles have changed. Dealing was different in the past; we were both perfectly fine, healthy adults. Now, it's not the same thing, because you recognise that there's a certain difference in one of the two basic members of the family.

... in essence, it's like taking care of a child, just in much greater proportions.'

Henceforth the husband appears to treat his wife differently. Before the outbreak of the disease, she was a 'healthy adult' the same as he presently is, but now she is a 'patient' and a 'big child'. The wife as a patient appears to be divested of her feminine role. It's as if the disease shapes a human being differently, takes it back to its childhood and builds for it a different character.

For the father, the patient remains his child, of course, but his role towards her appears not to be expressed in the way that a parent wants to behave towards his grown up child.

Father: '... because I was seeing the child ... because, for me, she's a child, she may be 37, but she's my child ... lying on a bed and not being able to hold up her child ... it was a bad moment there, to see a 37-yearold person giving up everything.'

When a child is young, the parent may take care of it according to his own 'wants' and his own priorities. However, in this case, his role as a father figure appears to be fulfilled on the basis of his daughter's needs that are now defined by the 'musts' of the disease.

In a sense, one of the patient's younger sisters appears to have assumed a protective role, since she feels that she may more clearly discern her sister's needs:

Sister: 'There are also many times when I want to remind her of that, from the point of view of her taking much better care of herself. 'I try to remind her, so that it gets on her mind a bit, that she has to look after herself first. This is what I try to pass along to her.' The patient's sister appears to have assumed the task of constantly reminding her of her limits as if she was her vigilant guard. She tries to make her accept her new self and adopt a new attitude in her life.

4) NEW MINDSET AND THE ORDER OF THINGS

The family members appear to evaluate differently the importance of health after the outbreak of the disease within their close family circle. Through the restraints that come with the disease, they acknowledge a broader spectrum of possibilities that characterise a human being when she's healthy.

2nd Sister: 'That thing we usually say, that if one is healthy she can do anything. I see it now grounded in facts, namely, sometimes I think how different her life could be if she wasn't dealing with this issue. There's a huge contrast; in essence, it's a whole different world; namely, a huge difference between the two states [of health and of disease]' The relatives' perception of the importance of health is not confined to the actual conditions related to the patient; it represents a general consideration about everybody. Through the experience of the disease they also appear to empathise with others over health issues present in their milieu.

2nd Sister: 'I've become more sensitive towards what may happen to anybody around me, at any time and any moment. I hear the others differently when they deal with a health issue of theirs. I deal more sensitively with their family environment because I understand more of what this may mean for anybody, that is, to have a relative being sick in such a degree.'

The experience of disease appears to have gradually transformed the subject both at an emotional level, since she's become 'more sensitive', she 'hears' (= senses) now, and at an intellectual level ('deal with', 'understand'). The working of change appears to take place at various levels at the same time.

The presence of the disease appears to shape a 'different logic', as the husband describes it with regard to managing everyday situations related to the patient. on the husband's part, the patient's experience appears to be a burden, which he can't bear; the way to alleviate it is by keeping his distance, even a small one. Securing his own balance appears to be essential to him. That's what his logic dictates:

Husband: 'I've started to understand that I have to introduce myself to some new logics. That's why I try, on the one hand, to be close to the situation, but also a little distanced; to keep a core essence of logic and not to think of every step of the wife; such a balance.

If he can't preserve this core essence of his own logic, he will be at risk of swinging entirely over the other 'logic', the one of the disease, which would be a burden for him after having lost any sense of balance.

The relatives' priorities appear to have changed and the patient is now the centre of attention and interest with regard to concerns for everyday things. Here follows a rather typical description by one of the sisters:

1st Sister: 'When someone else is in the way, there's no room for showing your weaknesses, to show cold feet, there's no room for it, there's no slack for you. You have to hold back your own outburst and see how you're going to be alright for the other's sake.

The subject's needs appear to be pushed aside before the individuality of the patient, who becomes of great importance for the interviewee. The patient becomes the centre of caring, 'the centre of the world' for this subject. She herself appears to 'open up' and meet with the patient's world. This is the origin of empathy, of the ability to grasp her sister's mental experiences, to even emotionally enter her sister's experience.

Discussion

MS appears to be experienced by family members as an extraneous entity to be dealt with separately from the patient; an entity that evolves and poses limits to the patient's body and, by extension, to the life of the family members. According to Benner (1994), the body becomes 'object' and the disease along with the body is the 'other', i.e. not the self. For that reason,

MS itself is often presented under the guise of an 'intruder' or 'enemy' that they are called to fight against. As Gadamer (1996) suggests, even when we say that we've succeeded in mastering a disease, it is as if we separate it from the person suffering from it. In the study at hand the subjects treat the disease as an independent entity and each one of them, in his or her way, has to try to help master it.

MS is the condition that limits and constrains everyday life, as well as the very thoughts of the relatives about their future plans. It is the accompanying uncertainty over what may come next that creates the feeling of insecurity and being 'unhomely in the midst of familiar things' (Heidegger, 1925). Therefore, the relatives' emotional state resulting from the sense of unhomeliness and personal unpower is marked by strong anxiety. But, on the other hand, the sense of alienation towards our world presents us with the limits of our Dasein. It's that very anxiety that, by showing humans the limits of their being, suggests for them the opening towards something else. The relatives' anxiety, on the one hand, shapes the reality of unhomeliness and, on the other hand, constitutes a kind of juncture for the opening to something new at the level of experience. This is 'a kind of ontological nausea', according to Jonathan Ree (1999), which emerges whenever each one of us approaches the understanding of the innate instability of our existence; instability resulting from the dual inability of planning and choice that make each and every one of us able to have a hold on life itself.

Heidegger uses the concept of Care ('sorge' in German) in order to refer to the active engagement in the world, which he considers to be necessary to any human activity. This Care is a concept that expresses our personal engagement in the world and being-in-the-world involves a strong concern for things. Namely, this Care as a source of will is the key element that connects us to the world. It is a kind of care that acknowledges the existence of others. According to Noddings (1984), 'Care' means that one exits her own frame of reference and enters that of others. When we care, we think of the point of view of the other, the other's needs and expectations from us. our attention and thought are absorbed by the individual receiving the care, not by our self. That means that willingness towards others, and love, are emotions that reveal our existence; while experiencing them, we realise that we are a 'plan' projected on to something bigger, out of our self.

The change in roles of the patient's relatives that is caused by the disease, is expressed by the role of 'parent', 'protector', even 'guard', that they assume in order for them to control the situation by any means possible. In some cases, the patient is considered to overestimate her physical strengths, so that any worsening may result from her ill judgment about her limits. The Care in the sense of concern is expressed by parental-like roles towards the patient who, in being given care, appears as if she returns to her childhood. Furthermore, the family members report the centering of their interest and attention on the patient's needs, which have now become a priority. In a telling way, they describe that the 'centre of the world' is not they themselves, and that they choose to manage things in a way that may not keep pace with their own needs and expectations. It is the distancing of the individual from itself that enables empathy to build an intersubjective bridge without which we would be detached from others (Cyrulnik, 2006).

Before the outbreak of MS, health was considered by the family members to be a mere fact of life, something self-evident. According to Plager (1994), health itself and what it constitutes for the life of either the entire family or its individual members, often remain unnoticed, up to the point when disease emerges as a disorganising fact and brings the meaning of health to the fore. Baron (1985) points out that health is the state of non-conscious existence of the self, which is then perturbed by the disease. It is in this state of rupture where the family members cultivate their introspection skills in order to understand the previously taken for granted health and henceforth appreciate its meaning in an experiential way.

Research limitations

Given its small sample, the results of the present study cannot be generalised for the general population. Hermeneutical phenomenology as a research method seeks to understand and not to provide explanations and reach final and generalisable conclusions (Spinelli, 2005). Therefore, it seeks meanings and not facts. The main question to be further pursued is existence as experienced by the human being (Heidegger, 1927). The way a person is to experience a chronic disease from the point of view of a patient's close relative is not determined by universal principles in the emotional and behavioral registers; on the contrary, it is solely a personal matter. In essence, there is no single objective truth determining a pattern based on which every human being attaches sense and reacts to a certain situation. At emotional, behavioral and conceptual levels, the same event may mobilise different reactions to different people. The findings can serve as an incentive for conducting further researches about the experience of healthy relatives. In such a way, health professionals would be able to orientate their practices within the scope of prevention and, at the same time, be open to any trouble or concern that may be presented by family members.

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Maro Bellou MSc is a clinical psychologist in the Multiple Sclerosis Clinic at Athens General Hospital. He also works in private practice as a psychotherapist.

Contact: 29 Achilleos St & 65b Vouliagmenis Ave, 16674 Glyfada, Athens, Greece.

Email: marobellou@yahoo.gr

Foteini JD Vouzavali PhD, MSc, RN is a teacher and laboratory instructor at the Department of Nursing, Technological Educational Institute of Athens.

Anna Koutroubas MSc is a psychologist in the Oncology Department of the Children's Hospital A & P Kyriakou in Athens.

Dimitris Damigos PhD, MSc is Assistant Professor of Medical Psychology at the Medical School, University of Ioannina.

Ioannis DK Dimoliatis PhD, MSc is Assistant Professor of Hygiene & Epidemiology at the Medical School of University of Ioannina.
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