Kjell Kristoffersen - Thesis: Being the sibling of a person suffering from mental illness

Kjell Kristoffersen, Associate Professor, Section of Nursing Science

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Kjell Kristoffersen, R.N. Dr. polit.
Department of Public Health and Primary Health Care
Section of Nursing Science
University of Bergen
Kalfarveien 31, N-5018 Bergen
Norway

Email: Kjell.Kristoffersen@isf.uib.no

Toward a Theory of Interrupted Feelings

Summary of thesis: Experience and reactions of being the sibling of a person suffering from a prolonged mental illness

1.Introduction

The aim of this study is to clarify the experiences and reactions of being the sibling of a person suffering from a prolonged mental illness. During the past few years there has been a reorganisation of the Mental Health Service in Norway and this has led to a downgrading in the use of institutions for the mentally ill and an increase in the use of community health services. This increase in the use of care at community level has obvious advantages, but at the same time it creates new problems and suffering. This, in certain cases, may lead to loneliness and a deficiency in the quality of care, especially with regard to the most vulnerable patient groups. Psychiatric nursing is directed towards the individual, the family, the immediate environment and the community. In such a context, knowledge concerning siblings is fundamental in order to gain an understanding of the patient's situation, to increase the quality of community health care and to give support to siblings who take on the responsibility of looking after their mentally ill brother or sister. Relations between brothers and sisters lasts over time, although the intimacy of the relationship may vary according to the life span. Siblings, more than other members of the family, share a common genetic and social development while they also have a common socio-cultural environment. These factors, together with increasing mobility within the community, smaller family units, both parents out at work and one parent families, create an increased dependence on and closeness to siblings. In a world in which small family units and increased mobility prevail, brothers and sisters are often one of the few supporting elements in life. Another aspect which must be taken into consideration is the fact that family members of mentally ill patients, for many reasons, are, themselves, a vulnerable group as far as the development of mental illness is concerned. The patient's home environment plays a great part in the course of the illness. The patient's family is submitted to a considerable burden by having a member of the family suffering from a mental illness. The strain or burden may be defined in relation to the existence of problems, to difficulties and to unfortunate situations which occur, all of which have a bearing on the life of the other members of the patient's family.

The aim of the present study was to describe experiences and reactions which siblings have with regard to having a sister or brother who suffers from a prolonged mental illness.

Furthermore, the purpose of the study was to contribute to increased understanding of siblings having a sister or brother suffering from mental illness.

It is expected that an increased understanding of what it is like to be siblings of persons with prolonged mental illness will be important knowledge in the following respects:

In making plans for communal mental health care and for work on social network.
In making programmes and efforts which the National Health Service can put into practice with regard to siblings and other next of kin.
In achieving the major purpose of the study, which is to contribute to increasing the quality of life for these patients, their siblings and other family members, to improve co-operation between the next of kin and the Health Service and to improve the quality of psychiatric nursing with regard to these patients and their families.

2. Method

The method used in this study for the collecting of data, the systematising and interpreting of the data and the presentation of the data, is hermeneutic. The theoretical framework for this study is Fromm's theory, especially with regard to his theory of psychological integrity. Psychological integrity builds upon inherent feelings and is described by Fromm as an integral entirety composed of the following twelve elements: confidence, hope, belief, courage, transcendence, vulnerability, responsibility, interest, empathy, tenderness, love and identity.

The participants in this study are siblings of persons with prolonged mental illness. The study comprises 16 individuals, 10 women and 6 men. The age of the participants varied from 24 to 61 years, with an average age of 34 years. The researcher carried out 80 interviews, each lasting for an average of 50 minutes. The number of interviews on which this study is based was estimated by using the principle, data saturation. Saturation finds place when the researcher experiences that an increase in the number of interviews does not lead to an increase in the understanding of the participants feelings. The interviews were taped and interpreted by using the following sources: transcripts of the interviews, play-back of the tapes and notes which the researcher did after the interviews. This method, regarding the collection of data, is the qualitative, research interview. The interpretation is, for the most part, a mental process which includes dialogues at many levels. It is what is universal, with regard to the experience, which is interpreted, not the psychology of the participants' inner being. That which is universal is not in any conclusive degree connected with the individual life stories of the participants, but, to a greater degree, connected with the particular experience of having a sibling who suffers from a prolonged mental illness. The theoretical framework of this study provides both a limit and a perspective, with regard to interpreting. This acts as a corrective at the same time as it allows the empiric material to be expressed. The Declaration of Helsinki, with reference to research involving human subjects and the Ethical Guidelines for Nursing Research in the Nordic Countries constitute the criteria from which the ethical considerations related to the research have been taken.

The results of this study are presented in the form of a model with themes at three levels: main themes, sub-themes and basic themes. The main themes are: the illness, the emotions, the company of siblings, the relationship with other members of the family and personal development.

3. Results

The participants' experience of having a sibling suffering from a prolonged mental illness is deeply rooted in the feeling that the psychological integrity of that sibling is weakened or at breaking point. The person concerned is seen not to be whole and intact in the sense that he has a will of his own, opinions of his own and an identity of his own. It is as though the sister or brother involved is striving to find meaning in what is felt to be confusion and chaos, without they themselves being able to help in that struggle. They lose contact with the sufferer and his or her manner of speech and actions may also give cause for fear.

Psychological integrity is based on the individual's experiences and feelings in connection with his or herself and those who are close. Participants in the study emphasise the emotions felt, with regard to the sibling who is ill, as fundamental in the experience of having a sister or brother suffering from prolonged mental illness. The emotions sorrow and loss stand central as far as all the participants in this study are concerned. These emotions are central because they feel that the mentally ill sibling is dead socially, that they have lost a brother or sister with whom they could associate and with whom they could share the important events in their lives. They have lost the person as he or she was before the illness and, at the same time, the person who might have been if he or she were not mentally ill. The emotion grief is manifested by loneliness and pain, feelings which are both difficult to manage and difficult to convey to others. They may also feel that they cannot permit themselves to feel grief, and that grief is unjustified as far as others are concerned. They experience an innate feeling that they cannot allow themselves to feel grief and loss with regard to something which in a way they have lost but at the same time have not. They may also be hindered in feeling grief because others mean that there is no justification for the grief because they see no reason to grieve. Feelings are invalid from the point of view of the surroundings, whereas they create sadness in the those who have them. Sadness becomes, for many of them, a background emotion which colours their lives. This can have an effect on their ability and their courage to make decisions with regard to their own development, and thus can be an important factor as far as their own psychological integrity is concerned.

A feeling of hope is expressed as of vital importance for the maintenance and development of psychological integrity. Hope is expressed as the hope that their brother or sister shall become as they were, or become considerably better, they often vary between having realistic and non-realistic expectations. This can lead to fluctuating between hope and hopelessness. This fluctuation is often reinforced by a varying course in the illness. Because of this they are very often disappointed with regard to the hope which they felt, something which again can lead them in the direction of passive hope, or to them distancing themselves from their mentally ill sibling.

The participants often experience a feeling of guilt. The guilt is connected with the fact that they, themselves, may have contributed to the development of their brother's or sister's illness, or that they have had feelings or done things which were out of order, after he or she became ill. Some of the participants experience guilt because they feel that it would have been more just if they, themselves, had become ill instead of their sibling. They can feel that they are not justified in feeling guilt as others do not understand or accept the fact that they feel guilt. This can violate the person's integrity. Having a bad conscience can be the guiding principle for their doing the right thing. This, in turn, can encourage their development with regard to psychological integrity and productive love. The participants describe the feeling of guilt as a complex feeling. The most common feeling of guilt is connected with the stigmatising character of the illness, but guilt can also be expressed as resolving from a feeling of they, themselves, being violated and debased when they experience the violation and debasement of their mentally ill sibling. This may be seen in association with the way in which the person who is ill, lives, and the way he or she is treated by other persons and by institutions. Guilt is tied up with other feelings such as helplessness, debasement, being unworthy or worthless. A feeling of guilt, which has been conquered, can help to strengthen psychological integrity and to create engagement and energy in the care of the mentally ill sibling. The participants' feelings of anger are often complex. Anger with regard to the mentally ill sibling is attached to the burden which they feel is imposed upon them by the sibling, and with the feeling that the brother or sister does not do enough to get better, him or herself. Anger can also be connected with the feelings they have themselves in relation to the sibling who is mentally ill, and which they, themselves, find unacceptable. The participants experience, moreover, anger as being a force which can increase psychological integrity.

The participants experience the feelings they have with regard to their mentally ill sibling as confusing. The confusion of emotions which they have, with regard to the sibling who is ill, can play a part in feelings not being worked through, in their being difficult to understand and difficult to describe to others. All the participants in the study had a sibling with a varying course as far as the illness is concerned. This is manifested by the mentally ill sibling going through alternating good and bad periods. This alternating in the character of the illness can take place over longer or shorter periods in time. The varying course of the illness is felt to have great influence on the feelings the participants have towards the mentally ill sibling. During the first period of the illness they experience shock, grief and despair. Gradually, as the sibling becomes better, most of them see the illness as a passing crisis in the life of the mentally ill sibling, and grief is replaced by hope. The mentally ill sibling is, however, not quite as he or she was before the illness, and during the next period of illness feelings become more complex and difficult to cope with. When the sibling then enters a new, better period the participants experience less delight and have a more realistic feeling as far as hope is concerned. Great significance is placed both on the disturbance caused by improvement on adapting to grief and on the disappointment, with regard to hope, caused by the worsening in the illness. The fluctuations strengthen the melting together of grief, hope, guilt, shame and anger, they disturb working on the feelings and they create uncertainty and insecurity. Experience over time with the varying course of the illness is felt by most of the participants to help them to an increasing understanding and acceptance of the sibling's illness. The variations may also be a necessity in order to meet the pain created by the illness. Taking this into consideration it is difficult to assert that a varying course of the illness has, to exclusion, a negative effect as far as working on feelings is concerned.

The way in which the participants experience being together with siblings makes a framework for understanding the life of the participants with regard to having a sibling with prolonged mental illness. Experiencing the mentally ill sibling as having deficient psychological integrity affects being with the sibling. This experience is increased and strengthened by the sibling's lacking of ability with regard to the activities of daily life and the fact that he or she is not able to take care of him or herself. The participants emphasise the experience of this inactivity and lack of interest, and the feeling that one of their siblings is not able to make the most of his or her abilities and possibilities, as that which is most difficult to live with. The participants describe the feeling of caring for the sibling who is mentally ill, as warm and close. Caring is, on the other hand, not without problems. The participants express difficulty in caring for a person who is unstable and who often acts as a child. Periodically caring for the mentally ill sibling is felt to be a burden and they feel very much alone as far as the caring is concerned. The participants' engagement often fluctuates between, on the one hand, wanting to give care and, on the other hand, not wanting do have such a burden. Most of all, they feel the want of a mutual caring situation in which one's sibling is a friend and support. Threats and violence often take place in the company of the mentally ill sibling. This causes continuous anxiety and concern. The anxiety is connected to the mentally ill sibling's violence towards others, injury to him or herself and attempts at suicide. The emotional relationship with the sibling makes it difficult to cope with threats of violence, at the same time as it is difficult to establish a dialogue concerning the background and reason for them. The participants often feel that they are bound up in a situation in which no matter how they react to a threat, their reaction is out of order. Nevertheless the participants experience a certain degree of understanding with regard to the threatening behaviour.

The need to belong is essential for the development of psychological integrity. Productive love, as far as next of kin is concerned, has a central position with regard to this feeling. The participants feel that relations with mothers, fathers and other siblings are strongly affected by the mental illness of the sibling involved. The parents' despair with regard to the mentally ill child is reflected in the relationship with the other children. Very often the participants experience that the father is unable to accept that he has a child who suffers from a prolonged mental illness. Being in the company of the father is characterised by his not being really there, and by his lack of acknowledgement as far as they, themselves, are concerned. They experience that the father's behaviour is often aggressive and assertive. On the whole it would seem that the male participants in the study are the ones who are most affected by this lack of acknowledgement by the father. The participants feel that the mother is the one who is most preoccupied with the situation, and the one in the family who suffers the most strain. She is the one who tries to keep the family together. Healthy siblings are given a more grown-up role in the family than is to be expected according to their age. This applies particularly in relation to the mother. Their own needs, as far as parents are concerned, often recede into the background because of the needs of the mentally ill sibling. The participants feel that the other healthy siblings do not take on responsibility for the care of the mentally ill sibling. With regard to their own development during childhood and adolescence, other healthy siblings are important. This is especially important during periods when the parents' attention, care and responsibility are directed towards the sibling who is ill.

The participants feel that their mentally ill sibling has had, and still has, a vitally important role in their lives. A common trait which the participants share is that even if they have not always managed it, they now master a psychological difficult and inconsistent life. Their own development depends, to a great degree, on the relationship they have with their parents. Being protective to and supporting the parents by taking on responsibility and giving care in a greater degree than should be expected with regard to their role in the family, can, in the beginning, create a feeling of being worthwhile and of having self respect. This can, however, come into conflict with their own development, with the pleasures of their own lives and the need and desire for support from their parents. If they choose their own development they can thereby repulse the persons to whom they have the closest bonds. The participants feel that it is important to trust their own judgement, to assert their own identity and to meet their own needs. In such a context the ability to say "I don't want this, I won't do this, I don't understand this", is essential. This quality, which is an expression of their own identity and integrity, can be interpreted with regard to Fromm's theory, by his use of the phrase "homo negans". The participants emphasise how much it means their having contact with other persons than next of kin. This includes contact with friends, others of the same age and grownups. The importance of being able to share experiences with others who have similar experiences is also considerable.

The participants feel that experience, over time, as far as their mentally ill sibling is concerned, is burdensome at the same time as it has positive significance for their own growth and maturity. Several of the participants relate how emotions, which in the beginning seem negative, can also have a health-giving force. Grief, anger and guilt are emotions which can create the energy and the power to endure and contend with a situation, which to begin with appears to be unbearable. Hope, as far as the participants are concerned, is felt to be a life-giving force which they must not lose, even if the hope can maintain and hamper working through the grief process. Hope directs the course and intensity of the energy which the individual possesses. Confused feelings which are made worse by a varying course in the illness, by their own innate feeling of not being allowed to have these feelings or by the fact that the feelings are seen to be invalid by others, can, in such a context, be necessary in able to manage the pain which the illness causes. The participants' experiences show that neither suffering or pain are a hindrance as far as psychological integrity is concerned. Psychological integrity is usually retained and developed in spite of, and perhaps also because of, the pain which this special situation entails. The ability to build up their own lives together with others, lies here, and also the ability to give affection and care while, at the same time, also taking care of themselves. According to Fromm's theory these qualities are connected to the expressions "homo negans", "biofili", meaning love of life, "productive love" and "active hope".

4. Discussion

This study focuses on the siblings of persons with prolonged mental illness. The reason for this is the fact that next of kin are the most important persons with whom the Psychiatric Health Service collaborate. An understanding of siblings' experiences is of vital importance with regard to nursing psychiatric patients. If we are to regard siblings as important collaborators, we must also seek to understand how the siblings react to the situation. The chief gaol of this study has been to improve the next of kin's situation. This goal includes improving the quality of nursing these patients. Nursing, as far as next of kin are concerned, must, in most cases, be based on alliance and collaboration. The collaboration must be genuine and the next of kin must participate in care planning without having to take on responsibility they are not prepared to have, or to take part in care which is the responsibility of the National Health Service. Psychiatric nursing, with regard to this patient group, presupposes an understanding of to what extent siblings will involve themselves, and of how big a burden they are willing to accept. The results of this study document that siblings are a large and latent resource with regard to caring for psychiatric patients, simultaneously the study focuses on the siblings' own health, their quality of life and their development.

From a historical point of view, nursing has been directed towards the health giving forces which the patient has and those to be found in his or her environment. This is expressed by Nightingale with regard to the importance of making conditions advantageous for nature's own health-giving forces to go to work. This is carried further by Rogers, who focuses on mapping out and strengthening the patient's health-giving pattern. The growth orientated, tacit knowledge attached to nursing is now in the process of being brought to light, expressed in words and accepted, due to extensive nursing research. This study emphasises that psychiatric nursing is vitally important in the fortifying of psychological integrity. This is connected with the ideas "biofili" and "productive love". The essence of these ideas consists of faith, hope and love, and they imply care, responsibility, respect and understanding for those who are receiving the nursing. Hope, as a revolutionary force, becomes meaningful in such a context. From this point of view it is possible to look on "biofili" as a health-giving force. This force is also reflected in ideas such as "the power of pain" and "the power attained by a positive outlook on life". The participants in this study express clearly this health-giving force. This leads to an understanding of nursing in the context: to comfort, to relieve, to treat and at the same time to search for health-giving forces and growth which the patient involved is in possession.

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