“我不知道该如何、是否能够结束这一切”：照顾一位患有长期饮食障碍的人的叙述。
"I don't know how, if, it's ever going to end": narratives of caring for someone with an enduring eating disorder.
机构信息
School of Psychology, The University of Sydney, Sydney, Australia.
InsideOut Institute, University of Sydney and Sydney Local Health District, Sydney, Australia.
出版信息
Eat Weight Disord. 2024 Jul 30;29(1):50. doi: 10.1007/s40519-024-01681-5.
BACKGROUND
Families and carers are pivotal in supporting loved ones experiencing eating disorders. This role can bring immense distress and burden, yet the experience of caring for someone with an enduring eating disorder has had minimal research focus. Thus, the purpose of this study is to give voice to carers empowering their stories to increase awareness and understanding, which could inform support to carers and consequently people with a lived and/or living experience of eating disorders.
METHODS
Semi-structured interviews were conducted with 9 carers supporting individuals who had been experiencing an eating disorder for 7 or more years. Data were collected and analysed using narrative inquiry approach.
RESULTS
Carers' narratives revealed feelings of guilt and personal failure; a profound sense of disillusion with current treatment approaches; and immense grief and anguish. As they negotiated a tenuous relationship with hope and the uncertainty of their loved one's future, carers spoke to a complex myriad of feelings of acceptance, letting go, and forging on.
CONCLUSION
Carers deserve to have their voices heard where they are too often silenced. Their narratives provide an urgent call for transformation in our treatments for eating disorders and further involvement of carers within the treatment journey, and their lived experience perspectives have great potential to guide this endeavour.
LEVEL OF EVIDENCE
Level V, qualitative interviews.
背景
家庭和护理人员在支持患有饮食障碍的亲人方面起着关键作用。这个角色可能会带来巨大的痛苦和负担，但对于护理人员来说，照顾患有长期饮食障碍的人的经历却很少受到关注。因此，本研究的目的是让护理人员发出自己的声音，讲述他们的故事，以提高认识和理解，从而为护理人员提供支持，并为那些有过或正在经历饮食障碍的人提供支持。
方法
对 9 名照顾者进行了半结构化访谈，这些照顾者照顾的人患有饮食障碍已经 7 年以上。使用叙事探究方法收集和分析数据。
结果
护理人员的叙述揭示了他们的内疚感和个人失败感；对当前治疗方法的深刻幻灭感；以及巨大的悲伤和痛苦。当他们与希望和他们所爱的人未来的不确定性艰难地维持着关系时，护理人员表达了一种复杂的接受、放手和继续前进的感觉。
结论
应该让护理人员的声音被听到，而他们的声音往往被忽视。他们的叙述迫切要求我们改变对饮食障碍的治疗方法，并进一步让护理人员参与治疗过程，他们的生活经历视角有很大的潜力来指导这一努力。
证据水平
五级，定性访谈。
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