在他人陪伴下的孤独感:对严重精神障碍患者照顾者社会网络的混合方法研究。

Loneliness in the presence of others: A mixed-method study of social networks of caregivers of patients with severe mental disorders.

机构信息

Department of Psychiatry, Tehran University of Medical Sciences, Tehran, Iran.

Department of Public Health Sciences, School of Medicine & Dentistry, University of Rochester, Rochester, NY, USA.

出版信息

Int J Soc Psychiatry. 2023 Feb;69(1):190-199. doi: 10.1177/00207640221077580. Epub 2022 Feb 11.

Abstract

BACKGROUND

One in four families has at least one member with a mental disorder and families are the main caregivers in most patients in low and middle-income countries. Caregivers experience disruption in their routine lives, increased responsibilities, increased need for support, and changes in their network. The role of personal support networks in the health and burden of the caregivers is complex and depends on the context, cultural and socioeconomical variables. In this study, we aimed to investigate the personal support network of caregivers of patients with severe mental illness in Iran.

METHODS

By using a mixed-methods design, we focused on the structure and composition of caregiver networks, as well as self-perceived caregiver support.

RESULTS

We found that the support network of caregivers was mostly composed of immediate family members whom themselves were selectively chosen as a result of the multidimensional process of interaction between stigma, availability, and the perceived needs of caregivers. The participants mentioned economic and instrumental supports more frequently than emotional support, probably reflecting their unmet basic needs. Advocacy for providing formal systemic supports to caregivers, as well as interventions that expand caregivers personal support network is recommended.

CONCLUSIONS

Most participants of the study were relatively isolated and had a small network of support, mostly composed of immediate family members. Stigma was a serious source of family distress for caregivers and a limiting factor in social relationships.

摘要

背景

每四个家庭中就有一个至少有一名成员患有精神障碍,而在中低收入国家,家庭是大多数患者的主要照顾者。照顾者的日常生活受到干扰,责任增加,对支持的需求增加,社交网络发生变化。个人支持网络在照顾者的健康和负担方面的作用是复杂的,取决于背景、文化和社会经济变量。在这项研究中,我们旨在调查伊朗严重精神疾病患者照顾者的个人支持网络。

方法

采用混合方法设计,我们重点关注照顾者网络的结构和组成,以及自我感知的照顾者支持。

结果

我们发现,照顾者的支持网络主要由直系亲属组成,这些亲属是通过污名化、可用性和照顾者感知需求之间的多维互动过程有选择地选择的。参与者更频繁地提到经济和工具性支持,而不是情感支持,这可能反映了他们未满足的基本需求。建议为照顾者提供正式的系统支持,并干预扩大照顾者的个人支持网络。

结论

研究的大多数参与者相对孤立,支持网络较小,主要由直系亲属组成。污名化是照顾者家庭痛苦的一个严重来源,也是社会关系的一个限制因素。

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