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北印度地区精神分裂症患者家属的体验:一项定性研究。

Experiences of the family caregivers of persons with schizophrenia in north Indian region: A qualitative inquiry.

机构信息

Department of Nursing, All India Institute of Medical Sciences (AIIMS), Rishikesh, Uttarakhand 249203, India.

College of Nursing, All India Institute of Medical Sciences (AIIMS), Rishikesh, Uttarakhand 249203, India.

出版信息

Arch Psychiatr Nurs. 2024 Aug;51:17-24. doi: 10.1016/j.apnu.2024.05.005. Epub 2024 May 9.

Abstract

INTRODUCTION

Family caregivers with schizophrenia struggle with psychological, social, and other challenges due to stigma, lack of adequate information, and maladaptive coping strategies. We aimed to explore the experiences of caregivers of persons with schizophrenia (PwS) to comprehend the emotional challenges and other burdens and coping strategies utilized.

METHODS

We subscribed to a phenomenological approach and interviewed nine caregivers in-depth. Audio-recorded interviews were transcribed and translated from Hindi to English. Thematic analysis was performed using the seven-step Colaizzi's method. ATLAS.ti.22 was used for the analysis of the data.

RESULTS

Five themes emerged from the data: 1) general understanding of schizophrenia, 2) emotional burden, 3) Disruption in personal and socio-occupational life, 4) challenges in caregiving, and 5) coping strategies. Caregiving adversely affected the quality of life socially and financially. Schizophrenia stigmatized families, trapped them in their homes, and left them no choice but to get support from informal networks. Also, caregivers experienced a lack of healthcare facilities in the vicinity and reported a substandard level of formal care.

CONCLUSION

Giving care to PwS entails financial, social, emotional, and physical burden. Feelings of frustration, helplessness, uncertainty, and loss are common. Transformation of personal, professional, and social life are usual consequence of caregiving. Generally, caregivers cope through addictions or spiritual means. Significant perceived requirements include a lack of knowledge about the condition and how to manage it as well as inadequate support services. Emotional and financial support and community support services near home may ease the burden of caregiving for PwS.

摘要

简介

由于耻辱感、缺乏足够的信息和适应不良的应对策略,照顾精神分裂症患者的家庭照顾者面临着心理、社会和其他挑战。我们旨在探讨照顾精神分裂症患者(PwS)的照顾者的经验,以了解他们所面临的情感挑战和其他负担以及所采用的应对策略。

方法

我们采用现象学方法,对 9 名照顾者进行了深入访谈。采访的音频记录被转录并从印地语翻译成英语。使用科拉兹(Colaizzi)的七步分析法进行主题分析。ATLAS.ti.22 用于数据分析。

结果

数据中出现了五个主题:1)对精神分裂症的一般理解,2)情绪负担,3)个人和社会职业生活的中断,4)照顾的挑战,5)应对策略。照顾工作对社会和经济生活质量产生了不利影响。精神分裂症使家庭感到耻辱,将他们困在家里,使他们别无选择,只能从非正规网络获得支持。此外,照顾者还面临附近医疗设施不足的问题,并报告正式护理水平低。

结论

照顾 PwS 需要承担经济、社会、情感和身体负担。常见的感受包括挫折感、无助感、不确定性和失落感。个人、职业和社会生活的转变是照顾的常见后果。通常,照顾者通过成瘾或精神手段来应对。他们明显需要更多关于病情的知识以及如何管理病情的知识,以及缺乏支持服务。在患者家附近提供情感和经济支持以及社区支持服务可能会减轻照顾 PwS 的负担。

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