Palazzolo J, Brousse G, Favre P, Llorca P-M
Centre Hospitalier Sainte-Marie, Réseau ERAHSM, 87, avenue Joseph-Raybaud, BP 1519, 06009 Nice cedex 01.
Encephale. 2005 Mar-Apr;31(2):227-34. doi: 10.1016/s0013-7006(05)82389-9.
Social isolation has got to be one of the greatest losses in schizophrenia. For many authors, people with schizophrenia can have no friends, no spouse, and sometimes no family. Two thirds of patients with schizophrenia return to their parents' house after discharge from a hospital for the first psychosi episode. Family members generally receive very little education as to what they can expect. They may not know the importance of medication compliance. Family members are the primary victims of violence from psychotic individuals, usually their own son or daughter, and most families cannot believe their own son or daughter would be capable of such a thing. Although families are usually the main care givers at the beginning of schizophrenia they often find their experience very frustrating for a number of reasons, and relationships suffer. Family education and support have been shown to improve outcomes considerably and family education is the second strongest factor in relapse prevention. Without education and good relapse prevention families often burst out. Most of the homeless mentally ill in downtown city cores have lost their family relationships. It is not a reflection on their families so much as the lack of adequate treatment and support. The families tried and tried and lost their ill relative. A patient writes: "My father lives just outside of Monaco. My mother developed Alzheimer's a couple of years ago or so and with a series of mild strokes died recently. I haven't seen either of them very much in the last fifteen years. I have a sister, Nicole, who also lives in Paris. I lost those relationships to some degree over the years. I am rebuilding them now. Enter the professional friend, the case manager, usually in cases where the individual is quite disabled by schizophrenia and/or at considerable risk of relapse, and usually when the individual has lost their family relationships to some degree. I had a case manager for several years and always looked forward to her visits. Case managers help negotiate compliance to medication, housing, meaningful activity, substance abuse, poverty, isolation, and everything else living in the community can throw at you. Without a spouse you tend to spend a lot of time alone. One of the main reasons Marie-Claude and I moved in with each other was that neither of us was enjoying living alone. It was very romantic at first but now we are just friends who see less and less of each other. I suspect schizophrenia interferes with the quality and depth of relationships you have with other people. Amongst the people I know, schizophrenia has meant a pretty solitary life of poverty. I have a lot of acquaintances, and colleagues, but few close friends when not at work. Over the last ten years of living with schizophrenia on medication it is celibacy that has hurt the most. It saps the life out of you, your self confidence, your self esteem. In some Scandinavian countries and Holland disabled people are allowed monthly visits by state approved sex workers. To me that is only common sense. To live without sex is unnatural and can only cause emotional suffering. We don't recognize the importance of quality sexual experience in keeping people healthy and happy in France. That doesn't mean it isn't I have a pretty high profile in my community through the meaningful activity I do. From having a half dozen names and faces to remember, I now have what seems like hundreds. I have a lot of trouble remembering people's names and faces. I am still meeting new people but I'm rarely invited to socialize with any after work. They have families, full time jobs, kids, cars, cottages, etc. My life at home is pretty solitary. It's a nuisance to travel across the city to visit people. There are few people that I share a similar background with. Since people with schizophrenia tend to have trouble learning new things, and change very little as a result, we tend to have trouble making new friends. People with schizophrenia can come alive talking about things in the past before they became ill. It's as if their life grinded to halt when they became sick. I'm stuck in the mid seventies, and that's the music I like. Everybody I know with schizophrenia is quite isolated socially and I don't really know why. That is especially true for the older people in my age group. Younger people seem to be doing much better. Many still live with their parents. Most older people live alone. There is also the odd person who recovers well, returns to a career, and marries someone without schizophrenia. In cases where marriage predates the onset of schizophrenia, the outcome is often divorce although women are more likely to stick with their husbands with schizophrenia than vice versa, especially if there are already children. I hope the next generation who appears to be less disabled survives better than people of my age with schizophrenia. The goal of community integration is one that requires: more effective treatments and/or more financial support and/or a compassionate non-discriminating community. The combination of early diagnosis and atypical medications will change the face of schizophrenia. I'm not expecting more financial support from the government, but many more people with schizophrenia will start working again instead. Their social networks will develop but social networks are probably the hardest hit in schizophrenia. It's better that you never lose your friends in the first place". This testimony shows how the information of the schizophrenic patient is necessary, and underlines the importance of the relationships between the patient and his family. Our article insists on this theme, rarely developed in the literature.
社交孤立无疑是精神分裂症最严重的危害之一。许多作者指出,精神分裂症患者可能没有朋友、没有配偶,有时甚至没有家人。三分之二的精神分裂症患者在首次因精神病发作住院出院后会回到父母家中。家庭成员通常对病情了解甚少,他们可能不知道坚持服药的重要性。家庭成员还是精神病患者暴力行为的主要受害者,施暴者通常是他们自己的儿子或女儿,大多数家庭都无法相信自己的儿子或女儿会做出这样的事。虽然在精神分裂症初期,家人通常是主要照顾者,但由于多种原因,他们常常感到非常沮丧,家庭关系也因此受损。事实证明,家庭教育和支持能显著改善治疗效果,家庭教育是预防复发的第二大重要因素。没有教育和良好的复发预防措施,家庭往往会不堪重负。市中心大多数无家可归的精神病患者都失去了家庭关系。这与其说是家人的问题,不如说是缺乏足够的治疗和支持所致。家人一次次努力,却最终失去了患病的亲人。一位患者写道:“我父亲住在摩纳哥郊外。我母亲几年前患上了老年痴呆症,后来又经历了几次轻微中风,最近去世了。在过去的十五年里,我很少见到他们。我有一个姐姐,妮可,她也住在巴黎。这些年我在一定程度上失去了与他们的关系。我现在正在重建这些关系。这时会出现专业朋友,即个案管理员,通常是在患者因精神分裂症而严重致残和/或复发风险很高,且通常在患者在一定程度上失去家庭关系的情况下。我有一位个案管理员,多年来一直期待着她的来访。个案管理员帮助患者协调药物治疗、住房安置以及参与有意义的活动,解决药物滥用、贫困、孤立等社区生活中出现的各种问题。没有配偶陪伴,你往往会花很多时间独处。我和玛丽 - 克劳德搬来一起住的一个主要原因是,我们都不喜欢独自生活。一开始这很浪漫,但现在我们只是朋友,见面越来越少。我怀疑精神分裂症会影响你与他人关系的质量和深度。在我认识的人中,精神分裂症意味着相当贫困和孤独的生活。我有很多熟人、同事,但工作之余几乎没有亲密朋友。在过去十年服用药物治疗精神分裂症的生活中,独身对我的伤害最大。它耗尽你的生命、自信和自尊。在一些斯堪的纳维亚国家和荷兰,残疾人可以每月接受国家批准的性工作者的探访。在我看来,这是很正常的事。没有性生活是不自然的,只会导致情感痛苦。在法国,我们没有认识到高质量性体验对人们保持健康和幸福的重要性。但这并不意味着它不重要。通过我参与的有意义的活动,我在社区里有一定的知名度。以前我只需记住半打名字和面孔,现在似乎有数百个。我很难记住人们的名字和面孔。我仍在结识新人,但下班后很少有人邀请我一起社交。他们有家庭、全职工作、孩子、汽车、别墅等等。我在家的生活相当孤独。穿过城市去拜访别人很麻烦。和我有相似背景的人很少。由于精神分裂症患者往往学习新事物有困难,结果改变很少,所以我们往往难以结交新朋友。精神分裂症患者在谈论患病前的往事时会变得很活跃。仿佛他们生病后生活就停滞了。我停留在七十年代中期,那是我喜欢的音乐风格。我认识的每个精神分裂症患者在社交上都很孤立,我真的不知道为什么。在我这个年龄段的老年人中尤其如此。年轻人似乎情况要好得多。许多年轻人仍然和父母住在一起。大多数老年人独自生活。也有少数人恢复得很好,重返工作岗位,并与没有精神分裂症的人结婚。如果婚姻在精神分裂症发病前就存在,结果往往是离婚,不过女性比男性更有可能与患有精神分裂症的丈夫维持婚姻,尤其是有孩子的情况下。我希望下一代似乎残疾程度较轻的人比我这个年龄段患有精神分裂症的人生活得更好。社区融合的目标需要:更有效的治疗和/或更多的财政支持和/或一个富有同情心且不歧视的社区。早期诊断和非典型药物的结合将改变精神分裂症的面貌。我不指望政府提供更多财政支持,但会有更多精神分裂症患者重新开始工作。他们的社交网络会发展,但社交网络在精神分裂症中可能是受影响最严重的。最好是你一开始就不要失去朋友”。这段证词表明了精神分裂症患者信息的必要性,并强调了患者与家人关系的重要性。我们的文章坚持这一主题,而这在文献中很少被提及。