Magliano Lorenza, Fiorillo Andrea, De Rosa Corrado, Malangone Claudio, Maj Mario
Department of Psychiatry, University of Naples, Largo Madonna delle Grazie, I-80138 Naples, Italy.
Soc Sci Med. 2005 Jul;61(2):313-22. doi: 10.1016/j.socscimed.2004.11.064. Epub 2005 Jan 25.
This study explored burden and social networks in families of patients with schizophrenia or a long-term physical disease. It was carried out in 169 specialised units (mental health department, and units for the treatment of chronic heart, brain, diabetes, kidney, lung diseases) recruited in 30 randomly selected geographic areas of Italy. The study sample consisted of 709 key relatives of patients with a DSM-IV diagnosis of schizophrenia and 646 key relatives of patients with physical diseases. Each relative was asked to fill in the Family Problems Questionnaire (FPQ) and the Social Network Questionnaire (SNQ). In all selected pathologies, the consequences of caregiving most frequently reported as always present in the past 2 months were constraints in social activities, negative effects on family life, and a feeling of loss. Objective burden was higher in brain diseases, and subjective burden was higher in schizophrenia and brain diseases than in the other groups. Social support and help in emergencies concerning the patient were dramatically lower among relatives of patients with schizophrenia than among those of patients with physical diseases. In the schizophrenia group, both objective and subjective burden were significantly higher among relatives who reported lower support from their social network and professionals. The results of this study highlight the need to provide the families of those with long-term diseases with supportive interventions, including: (a) the management of relatives' psychological reactions to patient's illness; (b) the provision of information on the nature, course and outcome of patient's disease; (c) training for the relatives in the management of the patient's symptoms; and (d) the reinforcement of relatives' social networks, especially in the case of schizophrenia.
本研究探讨了精神分裂症患者或患有长期躯体疾病患者家庭的负担及社会网络情况。该研究在意大利随机选取的30个地理区域内的169个专科单位(精神卫生科以及慢性心脏病、脑病、糖尿病、肾病、肺病治疗科室)开展。研究样本包括709名被诊断为DSM-IV精神分裂症患者的主要亲属以及646名患有躯体疾病患者的主要亲属。每位亲属均被要求填写家庭问题问卷(FPQ)和社会网络问卷(SNQ)。在所有选定的病症中,过去两个月中最常被报告始终存在的照护后果包括社会活动受限、对家庭生活的负面影响以及失落感。脑病患者的客观负担较高,而精神分裂症和脑病患者的主观负担高于其他组。精神分裂症患者的亲属在患者紧急情况时获得的社会支持和帮助明显低于躯体疾病患者的亲属。在精神分裂症组中,报告从其社会网络和专业人员获得较低支持的亲属,其客观和主观负担均显著更高。本研究结果凸显了有必要为患有长期疾病者的家庭提供支持性干预措施,包括:(a)管理亲属对患者疾病的心理反应;(b)提供有关患者疾病的性质、病程和结果的信息;(c)对亲属进行患者症状管理方面的培训;以及(d)加强亲属的社会网络,尤其是在精神分裂症患者的情况下。