Division of Psychology, De Montfort University, Leicester, UK.
Disabil Rehabil. 2022 Jun;44(11):2285-2294. doi: 10.1080/09638288.2020.1829104. Epub 2020 Oct 12.
Families provide vital support to relatives with brain injury yet shoulder significant stress and anxiety with little help threatening family cohesion and rehabilitative outcomes. This paper analyses the accounts of people caring for a long-term partner with brain injury to identify coping mechanisms and support systems that enhanced well-being. This study used semi-structured interviews with eight participants and interpretative phenomenological analysis.
Three themes are reported-"moving through denial toward acceptance"; "confronting and managing ambiguous loss"; and "becoming an expert carer". Theme one describes participants' struggles to accept the longevity of brain injury and use of strenuous care practices to deny or fight disability; this proved counterproductive and was later remedied by individuals embracing change and making adaptations. Theme two reports how participants split their partners' identities -before and after brain injury- to help grieve for the marital relationships they lost. Theme three looks at participants' development of self-reliant attitudes to caregiving due to perceived limited state help, while embracing peer support that enhanced information and emotion-based coping.
Findings support therapeutic practices that help family members confront the permanence of brain injury, and target feelings of complex and unresolved grief. Future research proposals are discussed.IMPLICATIONS FOR REHABILITATION:Caregivers typically provide considerable rehabilitative support to spouses living with Acquired Brain Injury to manage the physical and psychosocial burdens of long-term disability.Therapeutic interventions should reconcile notions of hope and acceptance in order to help carers confront the permanence of brain injury and develop sustainable care practices.We recommend that interventions address feelings of unresolved grief and ambiguous loss and develop tailored support for caregivers which targets pertinent psychological concerns.
家庭为脑损伤患者的亲属提供了至关重要的支持，但他们自己却承受着巨大的压力和焦虑，几乎得不到任何帮助，这威胁到了家庭的凝聚力和康复效果。本文分析了照顾长期脑损伤伴侣的人的描述，以确定增强幸福感的应对机制和支持系统。本研究使用了对 8 名参与者的半结构化访谈和解释性现象学分析。
报告了三个主题——“从否认走向接受”；“面对和管理模糊性丧失”；以及“成为专业护理人员”。主题一描述了参与者在接受脑损伤的长期性和使用艰苦的护理实践来否认或对抗残疾方面的挣扎；这被证明是适得其反的，后来通过个人接受改变和做出调整来补救。主题二报告了参与者如何将伴侣的身份——脑损伤前后——分开，以帮助哀悼他们失去的婚姻关系。主题三着眼于参与者由于感知到有限的国家帮助而发展出独立自主的护理态度，同时接受同伴支持，增强了信息和情感应对。
研究结果支持帮助家庭成员面对脑损伤永久性的治疗实践，并针对复杂和未解决的悲伤感进行治疗。讨论了未来的研究建议。
照顾者通常为患有获得性脑损伤的配偶提供大量康复支持，以应对长期残疾的身体和心理社会负担。治疗干预措施应该调和希望和接受的观念，以帮助护理人员面对脑损伤的永久性，并发展可持续的护理实践。我们建议干预措施解决未解决的悲伤感和模糊性丧失问题，并为护理人员提供有针对性的支持，针对相关的心理问题。
