Soeterik Sonja M, Connolly Sarah, Riazi Afsane
a Department of Psychology , Royal Holloway University of London , Egham , UK.
b Institute of Neuro-palliative Rehabilitation , Royal Hospital for Neuro-disability , London , UK.
Neuropsychol Rehabil. 2018 Dec;28(8):1392-1407. doi: 10.1080/09602011.2018.1529603. Epub 2018 Oct 9.
Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants' accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.
意识障碍（DoC）会破坏亲密关系。本研究调查了家庭中意识障碍患者的经历。通过对九名女性进行半结构化访谈确定了四个主要主题，并使用解释现象学分析（IPA）进行分析：（1）无名之失，（2）无称谓的关系，（3）共生关系，（4）冻结的未来。参与者的叙述显示出复杂的损失和关系转变，应对起来颇具挑战。参与者融入了患者本人的角色，康复和社交探访的减少被他们视为个人的抛弃行为，这导致他们强烈要求专业人员提供支持。意识障碍带来的不确定性意味着参与者活在当下，难以规划未来。需要提供心理支持，以体现对这种独特复杂损失的敏感和认可，提供一个为损失命名的框架，开展关于该病症的教育，并增强应对慢性状况的能力。
