Introduction
There has been a reorganising of mental health care in recent years with an increased emphasis on more open care. A direction shift toward more open care has obvious advantages, but at the same time it also creates new problematic issues and additional suffering. The family is increasingly the most important support for the health care system. For this reason an understanding of siblings is of central importance, both in understanding the patient's situation in order to improve his/her health care and to support the siblings who assume responsibility for the patient.
The greatest burden for many siblings is connected with feelings in relation to the sick brother or sister. Shifting between distance and intimacy can therefore be an ambivalent pattern for many siblings. The purpose of this new study is to identify central aspects of feelings in relation to the experience of being a sibling to a person who suffers from schizophrenia.
Method
The study makes use of a hermeneutical method for the collection of data as well as for the systemising and interpreting of data. The participants in the study were 16 siblings of persons with the diagnose schizophrenia. A total of 80 interviews was done with an average length of 50 minutes.
Results
The fundamental feelings, which the subjects express in relation to their ill siblings, are grief, hope, guilt, anger and shame. It is difficult to distinguish between these feelings and they are often experienced as mixed. The central aspect of the feelings was identified under the themes; ambiguous loss, fluctuation, prohibition and invalidation. The themes were combined into a theory of interrupted feelings." The age span among the subjects did not appear to influence the results.
Ambiguos loss
The theme "ambiguous loss" forms the background for the understanding of the other themes. Loosing a person who is an important part of one's social network either through death or through the persons becoming difficult to have contact with, can create feelings of loneliness and grief.
Kari: It is like I am an only child. He is only physically present. He is present at Christmas. But he does not speak, and you don't have a genuine contact with one who is sick in this way. It is like you really don't have a brother.
Astrid: No, as you can say that it is almost like you have lost the brother you had. This is true because he is so totally different from the person he was.
To lose a relative through death is painful, but this type of grief includes the possibility of grief work, acceptance and peace. The core of the experience of loss among the subjects in this study lies in the paradoxical experience of losing a loved one whom one physically has not lost. This interrupts the feelings in a decisive way and is also reflected in the other themes with which this study is concerned.
The fluctuations
All of the participants in the study had a brother or sister with an illness that included a fluctuating process. This finds expression in that the sick sibling goes through good and difficult periods.
Frida: I was very angry at him. Felt that I was insulted. I never got to work through the grief because he became better time after time. I prepared myself to accept the reality that he was lost, but then he would be better again for a time.
Ingvild: Yes, it is different. The hope becomes less for each time. In a way the feelings were equally deep, but there is another dimension to them. When she began to be sicker the despair also began, and this time it was a genuine deep despair. Just to try to look things in the eye, that what I believed was not true, that she will be healthy again. I see now that if I shall avoid taking it so hard next time, I must accept the fact that it can very well go badly next time. You cannot have only despair or only hope; you must have both.
The process of the fluctuating illness strengthens the experience of both having and not having a brother or sister with whom to relate. A fluctuation between hope and hopelessness, and between happiness when there is improvement and grief when the illness intensifies, is the most significant result of the fluctuation. In this way the fluctuating process of the illness interrupts the feelings.
Prohibition The feelings of grief can be interrupted in that one experiences that it is not permitted to grieve over one's ill sibling even though the experience is that of having lost him or her. Nina expresses this as the most difficult problem in the relationship with her sick sister:
Nina: When someone dies they die. In that situation you have a reason to be sorry at times, but you can obviously go back and think about the lost one. But here you have lost someone, but you have not lost them. Here you don't have permission to grieve for her in the same way. Therefore I have perhaps chosen to be courageous and believe that she will be better, instead of going the other way. For the most part, it is from yourself that you don't get permission to grieve. If you do that, it is the same as if you have pronounced the person dead. They are not dead. And so things can be extremely difficult. You ask yourself, what is it you are aiming for, the person is there, you see.
The dilemma is that if one grieves one is almost guilty of causing the death of the ill sibling, and if one does not grieve the sorrow never comes to complete expression. The feelings become interrupted in that one experiences that it is prohibited to feel and act in such a way toward the ill sibling.
Invalidation
One thing that confuses the feelings is that the environment does not accept the emotions which siblings have in relation to their ill brother or sister. Other persons can contribute to the interruption of the feelings by trying to persuade or convince the siblings that it is not right for them to feel as they do.
Astrid: But people say how much shall you become involved in it? How much shall I become in what? He is my brother. He has always been my brother. He is still my brother. There is no difference. Don't believe everyone completely understands that. It's like, God how clever you are in that you choose to be concerned about him, but it doesn't have anything to do with that. You are not clever because you speak with one of your siblings. He is still the same person as earlier. He is sick, yes. But you can still talk with him. He still has his sense of humor. He is still the same for me.
Good advice can increase the experience of shame as Nina expresses it here:
Nina: But it seems to me that it is basically wrong as some persons do, especially in psychiatry, the comment the whole time that the relatives must not have guilt feelings. It could happen to anyone, it is not your fault. Obviously there is no one who has done something bad, but you will have guilt feelings regardless of how much people say that you should not feel such. After all you live with yourself. There is nothing one can do with that. Then one becomes shameful in addition, because someone says that what you feel is not true.
The feelings as seen from the outside become "invalid", while a feeling of sadness lies deeply hidden within the grieving person. The sadness will in many cases be an underlying feeling, and even if it is not especially strong it can colour the way the person generally experiences life. Without affirmation from other persons grief, shame and guilt feelings can be invalidated and interrupted.
Conclusion
The present study has lead toward a theory on the primary feelings, which can arise in relation to having a sister, or brother who suffers from schizophrenia. Siblings are bound by the close kinship to the ill one. The key component of the theory is that the feelings of grief, hope, anger, guilt and shame are interrupted by four interrelated factors:
Discussion
The discoveries in this study are directed toward an understanding of the meaning of the mixed feelings. The experience of grief can consist of many different mutually related factors. The grief can come to expression in that the healthy brother or sister suffers along with the ill sibling by identifying herself or himself with the sick sibling's situation. A degree of understanding is developed which is based on an insight, which is a form of empathic grief with its basis in compassion. The ambiguous nature of the feelings is also described in relation to the loss of a child, the loss of a soldier in war, and the experience of loss in connection with Alzheimer's disease. All the feelings share the common characteristic of grief in relation to loss which cannot be accepted as objective, and which therefore is experienced as ambiguous, uncertain or suspicious. This is consistent with the theme "ambiguous loss" in the present study.
The lived experience of having a sibling with a long-term mental illness can lead to insight and growth for the healthy brother or sister. The swinging process of the sickness can be of help for the acceptance of the illness and for the development of realistic hope. The changes can be necessary in order to accept the pain, which the sickness creates. From this perspective it is difficult to say that the interrupted feelings have only a negative effect. Understanding one's own feelings in relation to a sibling with long term mental illness can encourage personal growth and development.
The theory should be tested and be used as an hypothesis for studies directed toward other groups. This is especially interesting in relation to suffering which has a fluctuating process, and to suffering which has a stigmatising character. Among the many examples, which could be mentioned, is mental illness with short-term improvement, misuse of drugs with short-term abstinence, short-term violence towards persons in close relationships, and physical illnesses with a fluctuating process.
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