Giovannetti A M, Černiauskaitė M, Leonardi M, Sattin D, Covelli V
Neurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation , Milan , Italy.
Brain Inj. 2015;29(4):473-80. doi: 10.3109/02699052.2014.990514. Epub 2014 Dec 17.
This study aimed at better understanding of the complex psychological process underlying the demanding situation of taking care of a relative with disorder of consciousness (DOCs).
This is a qualitative study based on the grounded theory constant comparative method.
Narratives of informal caregivers were collected through in-depth interviews with a psychologist. A three-step coding scheme was applied: coding of narratives to label the specific contents; organization of codes into sub-categories and categories; and theoretical coding to describe the relation between categories.
Twenty informal caregivers participated in one in-depth interview between December 2011 and May 2012. Four major themes emerged: Another person with past in common; Losing and finding myself; Old and new ways of being in relationship; and Dealing with concerns. These themes represent caregivers' efforts to deal with the situation in which their relative is at the same time present and absent. The core salient feature emerging from all these themes is the experience of ambiguous loss.
Features of ambiguous loss that emerged in this study could guide clinicians' interventions to support adjustment of caregivers of patients with DOCs.
本研究旨在更好地理解照顾意识障碍（DOCs）亲属这一艰巨状况背后复杂的心理过程。
这是一项基于扎根理论持续比较法的定性研究。
通过与一位心理学家进行深入访谈，收集非正式照料者的叙述。采用三步编码方案：对叙述进行编码以标记具体内容；将代码组织成子类别和类别；进行理论编码以描述类别之间的关系。
20名非正式照料者在2011年12月至2012年5月期间参与了一次深入访谈。出现了四个主要主题：有共同过去的另一个人；失去与找回自我；建立关系的新旧方式；以及处理担忧。这些主题代表了照料者应对其亲属既在又不在的状况的努力。所有这些主题中出现 的核心显著特征是模糊丧失的体验。
本研究中出现的模糊丧失特征可为临床医生对DOCs患者照料者进行支持性调整的干预提供指导。
