فقدان و اندوه در بیماران مبتلا به اسکیزوفرنی: در مورد زندگی در جهانی دیگر

Aim Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia. Method A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping. Results All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning. Discussion Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded. Clinical implications Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.

Results A particular focus on the experience of loss occurred in the first interviews as all respondents were keenly aware of their loss. Experiences of loss were articulated when answering the question about the impact of schizophrenia on day-to-day life. The experience of loss was initially categorized using the topics corresponding with internal and external losses. The subsequent interviews used grief and coping as central concepts and concentrated more on coming to terms with these losses. Internal Loss: Living in a Different World The internal loss suffered by patients as a consequence of schizophrenia is wide ranging and has a large impact on the respondents' daily lives. Psychotic episodes were experienced as highly traumatic because of the frightening feelings and thoughts experienced. Several respondents referred to their experiences as awful or dreadful and used strong terms for psychosis such as sheer hell. There was the feeling that all sound was focused on me; it was very loud and got louder and louder and I was in more and more pain. It felt extremely oppressive…And I felt that things would get completely out of hand at the end that I would wind up in a straitjacket. And would never get out of it again. Like being in a kind of hell—not the fact that I was there, but that it was me…. The traumatic experience was intensified by unexpected and sometimes involuntary hospital admission and treatment. In terms of consequences, a psychosis first of all causes respondents uncertainty and self-doubt regarding the workings of their brain and senses. They can no longer rely on their own observations and thought processes. Jarosinski (2006) describes this uncertainty for patients as the theme “Are they who they are?” As the psychotic symptoms subside, respondents become aware that their psychotic perceptions do not correspond with reality. There is incongruence between the picture formed of themselves and the surrounding world. This demands a reorientation as a new reality has to be accepted. Subsequently, respondents fear a new psychotic relapse and the resulting loss of control. The prolonged presence of symptoms and side effects of medications caused a great deal of distress in their daily lives. Commonly reported perceptions of loss included faulty memories, garbled thinking, and fatigue. As a result, they function somewhere below the level achieved before the illness and viewed themselves as impaired. Feelings of meaninglessness and emptiness resulted from a more or less enforced passivity created by the loss of energy and inability to complete usual daily activities such as work or school that had been previously taken for granted. Research into the perception of chronic physical illness demonstrates that the life of a person with chronic illness is sometimes described as a life in “two worlds”: the normal world and the world of the illness (Grypdonck, 1998 and Jarosinski, 2006). This leads to the experience that the world of the person who is chronically ill is no longer the same as that of others. Living with schizophrenia can therefore mean “living in another world”—the world of the psychotic experience. It is also the world of a person experiencing a chronic illness with long-term symptoms and permanent impairments as the patient's own psychotic reality conflicts with the surrounding reality. Because I know you can't tell by looking at me, so at first it won't even occur to people. But that does tend to make life very complicated, and it sometimes makes me extremely lonely. Just this week I had the feeling that I was awake and the rest were asleep. Other people haven't been through any of this, they are sleeping, and they have no idea what it is like to…Do you know what I'm saying? And for me there is no way back. External Loss: Not Belonging Loss of cognitive skills and the presence of both positive and negative symptoms often lead to fewer social contacts and a declining quality of interaction with the remaining contacts. This loss of satisfying social contacts intensifies feelings of loneliness and constitutes an external loss. Working, studying, and almost all daily activities can also be greatly affected by the limitations of schizophrenia. The respondents experienced external losses in all important areas of life. Their social network had become very small. They described the loss of friends, acquaintances, and colleagues and sometimes had not a single friend left in the world. In many cases, it had become extremely difficult if not impossible to enter into and maintain a relationship with a partner. The quality of their remaining contacts had also significantly decreased. Respondents identified that their thought disorder led to communication problems, they deliberately avoided social situations to escape stress, and their friends and acquaintances simply did not understand. The erosion of a person's social network has many consequences, one of which is the almost total lack of the practical and emotional support ordinarily offered by partners and friends. Respondents are thrown back upon the most basic relationships of all: family ties. Existing relationships change because respondents grow increasingly dependent; they are aware that they are a source of concern and have the feeling that they have failed in their relationships. My parents have supported me all these years; they always would come and see me. I have three cats and my father cared for them every time I was admitted to the hospital, even when it lasted two years. They always were behind me…I am their problem child. I don't think they realize that I occasionally don't want to live anymore. I don't want them to know and be afraid. The theme of “not belonging” is common to all the stories of respondents about the different forms of external loss. It is based on the reality of literally no longer being able to take part and on the feelings of “being different,” as described under internal loss. This is where internal and external loss meet. I don't feel completely safe in the dorm, especially not with what I have. Everything seems to go too fast. I don't fit in because I am not really studying anymore anyway. Writing e-mails, making new friends—it is such hard work. How to put it…I haven't seen them for a year and I just have the feeling that I don't belong. I don't even know if I want to belong. The literature on grief describes how people who sustain a loss may end up isolated (Worden, 2001). On the basis of the interviews, it may be assumed that patients with schizophrenia experience double isolation: isolation that results from the primary symptoms and isolation due to consequences of schizophrenia. Expressions of Grief Several spontaneous expressions of grief occurred in relation to both internal and external experiences of loss. Grief reactions were further discussed in specific questions about thoughts and feelings in relation to the losses. The mourning process starts with the shocking discovery that a person has schizophrenia. The diagnosis offers an explanation for the symptoms and in this sense, it gives clarity. At the same time, it says that the respondent is experiencing a serious psychiatric disorder that has a dramatic impact on daily life and on the future. People view this as a psychological disaster and sometimes describe it in terms of a natural disaster. For years I had been going around in a sort of circle. The circle got bigger and bigger; it turned into a cyclone. The storm was devastating, and afterwards you have to pick up the pieces. A twofold denial often occurs at the beginning of the mourning process: denial of the diagnosis and the need for treatment and denial of the seriousness of the limitations and the adjustments that will be necessary in daily life. Generally speaking, the respondents in our study were well informed about their illness and were able to describe their limitations clearly. However, acting in accordance with this knowledge was difficult for a number of them because this presumed a certain acceptance of the situation. Not looking the loss in the face seems to be one way of not feeling the grief and not being overwhelmed by emotions. I would rather run away from all those things; I just can't focus. It's all so painful, a kind of paralyzing sadness. That is what I run away from. I don't want to face it. I prefer not to talk about it. Mourning the loss is expressed by the emotions of grief, somberness, desperation, guilt, and anger and the behaviors of withdrawal from social contacts and placing blame on self or others. If the mourning process stagnates, the experiences of loss seem to increase. For example, nonacceptance of medication and rules of life can cause symptoms to increase. Symptoms in turn are an obstacle to daily activities and have a negative effect on contacts with others. Feelings of isolation and alienation multiply, and the quality of social contacts declines further. People feel more powerless and become desperate, which may be expressed by a depressed state of mind and suicidal behavior. Respondents directly experience a loss of future prospects. In one of the autobiographical sources, this is put in the following words: My illness is a journey of fear, often paralyzing, mostly painful. If only someone could put a bandaid on the wound…but where? Sometimes I feel I can't stand it any longer. It hurts too much, and I'm desperate to feel safe, comforted. (McGrath, 1984 p. 638) Sufficient comfort and support are needed to grieve constructively. Only then can a person begin to cope with the loss suffered. During the interviews on loss and mourning, several respondents spontaneously mentioned “coping” or “coming to terms.” They had learned to cope with “it” or were in the process of coming to terms with “it.” These terms were therefore further elaborated in subsequent interviews. Coming to Terms Coming to terms is a part of the mourning process aimed at finding a new equilibrium. Grief and coming to terms cannot be separated; they lie on the same continuum (Witmann & Keshavan, 2007 and Worden, 2001). Respondents use various strategies to cope with their experiences of loss and to integrate them into their existence. These strategies are described in the next paragraphs. Coming to terms starts with recognizing the loss as a fact. The respondents expressed this by saying that they had accepted their losses to a great extent. This refers to acceptance of the diagnosis and treatment, the wanting to receive help, and the acceptance of their limitations. An incomplete awareness of the illness and poor insight can make it more difficult to accept the diagnosis. Understanding and acceptance are increased by medication efficacy, decline in psychotic symptoms, repeated provision of illness information, and opportunities to identify. Strange, isn't it, I had never heard of this illness. First you just don't believe it, but later you start to accept it. After all, the symptoms are all there. Everything they tell you, whatever you read, it all adds up. And you see that others have accepted it. These other patients have it too and they take their medication. Cognitive coping strategies include nourishing hope, living from day to day, seeking an explanation, and giving meaning to a life with schizophrenia. Nourishing hope is of great importance because it is literally a source of life. Hope was explicitly mentioned in discussions on the positive effects of medication. This included the hope that the illness would take a favorable course and that there would be no new psychotic periods. Hope was also expressed in connection with new or different future prospects of relationships and work. Finally, respondents gave their life meaning by setting themselves a special assignment in life or believing that God supports them by enduring the pain. Sometimes when I have survived a heavy crisis, I feel rich…I belief that if there were no God, I was irrecoverably lost…Just the idea that there is Somebody who meant me to be here, it helps. Observing others with an illness is an important way of gaining an understanding of the progress of an illness that is difficult to comprehend. It becomes easier to accept the fact that psychotic experiences are not reality if you discover that fellow patients have similar psychotic symptoms. This is an important advantage of group psychoeducation. The combination of identifying with fellow patients and obtaining information helps to make impairments manageable and may even lead to an active way of coming to terms. Respondents also sought help from the members of their own social networks and from professional care providers but did not always receive sufficient support. For some, the study interview was the first time they had talked at length about the personal significance and consequences of schizophrenia. Not being understood and not being comforted can be a heartrending experience. An evening like this… Tears filled my eyes. Nowhere to go No one knew what I was thinking Nobody who could comfort me Nurses having no time, the door always locked. (Frits Diepeveen, 1990 p. 86) One respondent told how she tried to comfort herself: When I was in the psychiatric hospital I always had a teddy bear on my bed. At a certain point I was holding that bear as if it was a child, and I slept all day with my child on my lap. I knew what I was doing and it was somehow comforting to me…but I felt completely at a loss: there I was, thirty-five years old and walking around dragging a teddy bear, something like: oh you poor thing, isn't it pathetic. The concepts of loss, grief, and coming to terms can be visualized in the following scheme (Figure 1). Theoretical scheme for relations between losses, grief, and coming to terms. Fig 1. Theoretical scheme for relations between losses, grief, and coming to terms.