a School of Health, Wellbeing and Social Care Faculty of Wellbeing, Education and Language Studies , The Open University , Milton Keynes , UK.
b Department of Nursing in the Faculty of Health , Psychology and Social Care, Manchester Metropolitan University , UK.
Disabil Rehabil. 2018 Jun;40(12):1456-1467. doi: 10.1080/09638288.2017.1300339. Epub 2017 Mar 30.
This paper reports on one of the themes that emerged from the analysis of the study, regarding the perceived influence of multiple sclerosis (MS) on the identity of mothers in the socio-cultural context of Italy.
In-depth interviews were conducted with 16 women at various stages of MS, with follow up interviews with seven of the women. Phenomenology guided the methodology and the analysis was conducted using interpretative phenomenological analysis.
Through the research the value of motherhood to the women who participated emerged. The findings illustrated how many strove to maintain control of their MS, which led to some making comparisons of themselves and other mothers and feeling different. Some women described how they adjusted their roles and found strength in being mothers but others spoke of their feelings of loss. Most women described living in the moment, appreciating the present and living each day as it came. Another significant experience was fear of stigma, both realized in the form of "pity" from others, and the perceived and actual associated stigma for their families. This contributed to why some women were reluctant to disclose their condition. The mothers who took part in this study differed in how they perceived their disabled identity.
Although this study was conducted in the socio-cultural setting of Italy, the findings have implications for professionals working with disabled mothers and women with MS in Italy and beyond; including recognizing the value associated with fully identifying oneself as a mother, rather than solely focusing on doing mothering tasks. Implications for Rehabilitation Professionals need to be mindful of the value of motherhood for women with multiple sclerosis. Professionals should support women who feel like they are battling with maintaining control of their multiple sclerosis, who may be adjusting their identity as mothers; recognizing that they may be influenced by the stage of their multiple sclerosis and whether they were diagnosed before or after having their children. Women can have feelings of loss related to their ability to fully participate in their children's lives and professionals should work with women to help them identify the value of their mothering role not only in physically participating in activities but also in being emotionally and physically present as a mother.
本文报告了该研究分析中出现的主题之一，即多发性硬化症（MS）对意大利社会文化背景下母亲身份的感知影响。
对 16 名处于 MS 不同阶段的女性进行了深入访谈，并对其中的 7 名女性进行了后续访谈。现象学指导了方法学，分析采用了解释性现象学分析。
通过研究，参与研究的女性的母亲身份的价值显现出来。研究结果说明了许多女性如何努力控制多发性硬化症，这导致一些人对自己和其他母亲进行比较，并感到不同。一些女性描述了她们如何调整自己的角色，从母亲的角色中获得力量，但也有一些女性谈到了自己的失落感。大多数女性描述了活在当下，珍惜现在，过好每一天。另一个重要的经历是对耻辱感的恐惧，既有来自他人的“同情”，也有对自己家庭的感知和实际的耻辱感。这就是为什么有些女性不愿意透露自己的病情。参与本研究的母亲在如何看待自己的残疾身份方面存在差异。
尽管这项研究是在意大利的社会文化背景下进行的，但研究结果对意大利和其他地区的残疾母亲和多发性硬化症女性的专业人士具有启示意义；包括认识到将自己完全认同为母亲的价值，而不仅仅是专注于做母亲的任务。康复专业人员需要注意多发性硬化症女性的母亲身份的价值。专业人员应该支持那些觉得自己在努力控制多发性硬化症的女性，她们可能正在调整自己作为母亲的身份；认识到她们可能受到多发性硬化症阶段的影响，以及她们是在有孩子之前还是之后被诊断出患有多发性硬化症。女性可能会因为自己无法充分参与孩子的生活而感到失落，专业人员应该与女性合作，帮助她们认识到自己作为母亲的角色的价值，不仅体现在身体上参与活动，还体现在作为母亲的情感和身体存在。
