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多发性硬化症自我管理模式:成功自我管理的个人和环境要求。

Multiple sclerosis self-management model: Personal and contextual requirements for successful self-management.

机构信息

School of Rehabilitation Therapy, Queen's University, Kingston, Canada; Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, Canada.

Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, Canada.

出版信息

Patient Educ Couns. 2019 May;102(5):1013-1020. doi: 10.1016/j.pec.2018.12.028. Epub 2018 Dec 28.

Abstract

OBJECTIVE

To explore self-management strategies used by people with multiple sclerosis (MS) with aim of developing a MS self-management model.

METHODS

A grounded theory approach guided development of a MS self-management model. Eighteen individuals living with MS for three or more years and self-identifying as successfully managing their MS were interviewed twice using semi-structured face-to-face or telephone interviews six months apart. Demographic and disease characteristics were descriptively analyzed. Field notes and interview data were qualitatively analyzed to identify concepts and categories.

RESULTS

The emerging model revealed six person-related categories describing self-management strategies: adjusting outlook, managing stress, managing symptoms, healthy lifestyle, effective communication, and setting priorities and planning. Three context-related categories that required successful navigation for self-management were also identified: physical environment, personal social network, and community services and resources.

CONCLUSIONS

The emerging self-management model that is grounded in the perspective of people with MS includes person and context-related strategies that can be used concurrently to guide self-management in the variety of challenges experienced by people with MS.

PRACTICAL IMPLICATIONS

A self-management model of MS is useful to service providers, health professionals, advocacy organizations and people with MS to draw upon an organized and comprehensive approach to self-management.

摘要

目的

探索多发性硬化症(MS)患者使用的自我管理策略,旨在开发一个 MS 自我管理模型。

方法

扎根理论方法指导了 MS 自我管理模型的开发。18 名患有 MS 三年或以上且自认为成功管理其 MS 的个体接受了两次半结构化面对面或电话访谈,两次访谈相隔六个月。描述性分析了人口统计学和疾病特征。对现场记录和访谈数据进行了定性分析,以确定概念和类别。

结果

新兴模型揭示了六个与人相关的类别,描述了自我管理策略:调整观念、管理压力、管理症状、健康生活方式、有效沟通以及设定优先级和规划。还确定了三个与上下文相关的类别,这些类别需要成功导航才能进行自我管理:物理环境、个人社交网络以及社区服务和资源。

结论

新兴的自我管理模型以 MS 患者的观点为基础,包括与人相关和与上下文相关的策略,这些策略可以同时用于指导 MS 患者在各种挑战中进行自我管理。

实用意义

MS 的自我管理模型对服务提供者、医疗保健专业人员、倡导组织和 MS 患者都很有用,可以借鉴一种有组织、全面的自我管理方法。

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