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兄弟姐妹对患有小儿后天性脑损伤的兄弟姐妹的关系体验。

Siblings' experiences of their relationship with a brother or sister with a pediatric acquired brain injury.

机构信息

Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.

Psychological Services (Paediatrics), Alder Hey Children's NHS Foundation Trust, Liverpool, UK.

出版信息

Disabil Rehabil. 2019 Dec;41(24):2940-2948. doi: 10.1080/09638288.2018.1482506. Epub 2018 Jul 10.

Abstract

Child acquired brain injury has significant impact on the family, including siblings. This study aimed to explore siblings' experiences of their relationship with their brother or sister with acquired brain injury in order to make recommendations for health professionals working with this population. Semi-structured interviews were conducted with five siblings of children with acquired brain injury aged between 9 and 12 years and analyzed using interpretative phenomenological analysis. The analysis resulted in four themes: (i) Coping with "a nightmare that you live"; (ii) Disconnection from family relationships; (iii) My sibling is different but "still the same underneath all this thing"; and (iv) Changing togetherness. The siblings in this study experienced a high level of distress with the near loss of their brother or sister. This was followed by difficulty in adjusting to the physical and psychological changes in their injured sibling and the impact on their sibling role and relationship. The changes were experienced alongside disruption to family relationships. Important clinical implications include the inclusion of siblings in their injured sibling's care and the provision of information and support for this group.Implications for RehabilitationSiblings of children with an acquired brain injury experience significant challenges while trying to adapt to their changing sibling relationship and feelings of disconnection with their family.This study highlights a need to work systemically with families of childhood brain injury and recognize siblings' important role in their family unit and therefore involve them in their brother/sister's care and rehabilitation.This study also highlights a need to support siblings to cope with the trauma and provide information to validate and understand their experience.

摘要

儿童获得性脑损伤对家庭,包括兄弟姐妹,有重大影响。本研究旨在探索兄弟姐妹与获得性脑损伤的兄弟姐妹的关系体验,以便为与该人群合作的健康专业人员提供建议。对 5 名 9 至 12 岁获得性脑损伤儿童的兄弟姐妹进行了半结构式访谈,并使用解释性现象学分析进行了分析。分析结果得出了四个主题:(i)应对“你生活中的噩梦”;(ii)与家庭关系脱节;(iii)我的兄弟姐妹有所不同,但“在这一切之下仍然相同”;以及(iv)共同改变。本研究中的兄弟姐妹经历了因接近失去兄弟姐妹而产生的高度困扰。之后,他们难以适应受伤兄弟姐妹的身体和心理变化,以及这种变化对他们的兄弟姐妹角色和关系的影响。这些变化伴随着家庭关系的破裂。重要的临床意义包括将兄弟姐妹纳入受伤兄弟姐妹的护理中,并为该群体提供信息和支持。康复的意义兄弟姐妹在试图适应其不断变化的兄弟姐妹关系和与家庭脱节的感觉时,会遇到重大挑战。本研究强调需要系统地与儿童脑损伤家庭合作,并认识到兄弟姐妹在其家庭单位中的重要作用,因此需要让他们参与到其兄弟/姐妹的护理和康复中。本研究还强调需要支持兄弟姐妹应对创伤,并提供信息来验证和理解他们的经历。

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