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多发性硬化症患者的教育、心理和同伴支持需求未得到满足。

Unmet education, psychological and peer support needs of people with multiple sclerosis.

机构信息

School of Psychology, Deakin University, Melbourne Australia.

School of Psychology, Deakin University, Melbourne Australia.

出版信息

J Psychosom Res. 2015 Jan;78(1):82-7. doi: 10.1016/j.jpsychores.2014.05.010. Epub 2014 Jun 5.

Abstract

OBJECTIVE

Multiple sclerosis is a complex neurological disease which can cause impairment in a range of aspects of an individual's life. It often requires a degree of adjustment and peer support. The aim of the present study was to examine satisfaction with educational, psychological and peer support services of people with MS across gender, age and symptom severity.

METHOD

Participants completed a needs analysis questionnaire using Likert scales to determine the level of satisfaction with the support services. The questionnaire was sent to participants (n=3502) throughout Australia as paper copy with reply paid envelope, or made available to them online via email links. A total of 2805 responded and completed the questionnaire (80% response rate). Of those, 79% were female and 21% were male. The participants ranged in age from 19 to 92 years, (M=52.10; SD=11.82).

RESULTS

In terms of psychological services, females were less satisfied with their access to relationship and family counseling. There was also a clear need for more varieties in peer support groups, times, as well as modes of communication, especially among young people and mildly affected groups. Symptom severity was associated with a greater need for almost all education and psychological support services.

CONCLUSION

The findings of this study highlight current areas of unmet needs and may be used to inform the design and development of future education, psychological and social support services to ensure they are relevant and useful, as well as providing direction for future research.

摘要

目的

多发性硬化症是一种复杂的神经系统疾病,可导致个体生活的多个方面受损。它通常需要一定程度的调整和同伴支持。本研究的目的是检查不同性别、年龄和症状严重程度的多发性硬化症患者对教育、心理和同伴支持服务的满意度。

方法

参与者使用李克特量表完成了一份需求分析问卷,以确定对支持服务的满意度水平。问卷以纸质副本并附有回邮信封的形式分发给澳大利亚各地的参与者,或通过电子邮件链接在线提供给他们。共有 2805 人回复并完成了问卷(80%的回复率)。其中,79%为女性,21%为男性。参与者的年龄从 19 岁到 92 岁不等,(M=52.10;SD=11.82)。

结果

在心理服务方面,女性对获得人际关系和家庭咨询的机会不太满意。同伴支持小组也需要更多种类的服务,包括时间和沟通方式,尤其是在年轻人和症状较轻的群体中。症状严重程度与对几乎所有教育和心理支持服务的更大需求相关。

结论

本研究的结果突出了当前未满足的需求领域,并可用于为未来的教育、心理和社会支持服务的设计和开发提供信息,以确保其相关性和实用性,并为未来的研究提供方向。

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