Abstract：
People with chronic illnesses may struggle to adapt psychologically to the illness experience and have feelings of identity loss, self-diminishment, and biographical disruption. This may limit people\'s ability to engage in optimal self-management. Systemic sclerosis is a debilitating, stigmatizing, and life-limiting progressive chronic illness with significant disfiguring effects. Little is known about the identity management process in people with disfiguring and debilitating conditions such as systemic sclerosis.
The purpose of this study was to generate a grounded theory explicating the process of maintaining a sense of self in people living with systemic sclerosis.
Fifteen women with systemic sclerosis were recruited to ensure representation of a range of illness duration and progression. Semi-structured interviews were conducted, transcribed, and analyzed using open, selective, and theoretical coding.
A basic social process of \"maintaining self\" was generated from the data that explained the women\'s experience of living with systemic sclerosis and how they tried to hold on to their identity. Three core categories were identified. Adapting to changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of self was a distressing internal process where participants lost their sense of self and purpose. Restoring self was a transformative process that allowed participants to rewrite and rebuild their biographies.
Findings suggest that the management of identity was important for understanding how people adapt to life with systemic sclerosis. This study can help nurses better understand how to support patients holistically with the management of systemic sclerosis.
The purpose of this study was to generate a grounded theory explicating the process of maintaining a sense of self in people living with systemic sclerosis.
Fifteen women with systemic sclerosis were recruited to ensure representation of a range of illness duration and progression. Semi-structured interviews were conducted, transcribed, and analyzed using open, selective, and theoretical coding.
A basic social process of \"maintaining self\" was generated from the data that explained the women\'s experience of living with systemic sclerosis and how they tried to hold on to their identity. Three core categories were identified. Adapting to changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of self was a distressing internal process where participants lost their sense of self and purpose. Restoring self was a transformative process that allowed participants to rewrite and rebuild their biographies.
Findings suggest that the management of identity was important for understanding how people adapt to life with systemic sclerosis. This study can help nurses better understand how to support patients holistically with the management of systemic sclerosis.
摘要：
患有慢性病的人可能很难在心理上适应疾病经历，并有身份丧失的感觉，自我淡化，和传记中断。这可能会限制人们进行最佳自我管理的能力。系统性硬化症是一种使人衰弱的疾病，污名化，和限制生命的进行性慢性疾病，具有显著的毁容效应。人们对诸如系统性硬化症之类的毁容和衰弱状况的人的身份管理过程知之甚少。
■这项研究的目的是建立一个扎根的理论，阐明系统性硬化症患者保持自我意识的过程。
■招募了15名系统性硬化症患者，以确保表现出一系列的疾病持续时间和进展。进行了半结构化访谈，转录，并使用开放式分析，选择性,和理论编码。
■“维持自我”的基本社会过程是从解释女性患有系统性硬化症的经历以及她们如何努力保持自己的身份的数据中产生的。确定了三个核心类别。适应变化是参与者为继续他们的日常生活而苦苦挣扎的行为。拆除自我是一个令人痛苦的内部过程，参与者失去了自我和目标感。恢复自我是一个变革性的过程，允许参与者重写和重建他们的传记。
■研究结果表明，身份管理对于理解人们如何适应系统性硬化症的生活很重要。这项研究可以帮助护士更好地了解如何全面支持患者治疗系统性硬化症。
■这项研究的目的是建立一个扎根的理论，阐明系统性硬化症患者保持自我意识的过程。
■招募了15名系统性硬化症患者，以确保表现出一系列的疾病持续时间和进展。进行了半结构化访谈，转录，并使用开放式分析，选择性,和理论编码。
■“维持自我”的基本社会过程是从解释女性患有系统性硬化症的经历以及她们如何努力保持自己的身份的数据中产生的。确定了三个核心类别。适应变化是参与者为继续他们的日常生活而苦苦挣扎的行为。拆除自我是一个令人痛苦的内部过程，参与者失去了自我和目标感。恢复自我是一个变革性的过程，允许参与者重写和重建他们的传记。
■研究结果表明，身份管理对于理解人们如何适应系统性硬化症的生活很重要。这项研究可以帮助护士更好地了解如何全面支持患者治疗系统性硬化症。
