Charlotte Burman, Paul Rhodes, Sabina Vatter, Jane Miskovic-Wheatley
{"title":"\"我不知道这一切会不会结束\"：关于照顾患有持久性饮食失调症的人的叙述。","authors":"Charlotte Burman, Paul Rhodes, Sabina Vatter, Jane Miskovic-Wheatley","doi":"10.1007/s40519-024-01681-5","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p><p><strong>Level of evidence: </strong>Level V, qualitative interviews.</p>","PeriodicalId":11391,"journal":{"name":"Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity","volume":"29 1","pages":"50"},"PeriodicalIF":2.9000,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289154/pdf/","citationCount":"0","resultStr":"{\"title\":\"\\\"I don't know how, if, it's ever going to end\\\": narratives of caring for someone with an enduring eating disorder.\",\"authors\":\"Charlotte Burman, Paul Rhodes, Sabina Vatter, Jane Miskovic-Wheatley\",\"doi\":\"10.1007/s40519-024-01681-5\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p><p><strong>Level of evidence: </strong>Level V, qualitative interviews.</p>\",\"PeriodicalId\":11391,\"journal\":{\"name\":\"Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity\",\"volume\":\"29 1\",\"pages\":\"50\"},\"PeriodicalIF\":2.9000,\"publicationDate\":\"2024-07-30\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289154/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s40519-024-01681-5\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"PSYCHIATRY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s40519-024-01681-5","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PSYCHIATRY","Score":null,"Total":0}
"I don't know how, if, it's ever going to end": narratives of caring for someone with an enduring eating disorder.
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.
期刊介绍：
Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity is a scientific journal whose main purpose is to create an international forum devoted to the several sectors of eating disorders and obesity and the significant relations between them. The journal publishes basic research, clinical and theoretical articles on eating disorders and weight-related problems: anorexia nervosa, bulimia nervosa, subthreshold eating disorders, obesity, atypical patterns of eating behaviour and body weight regulation in clinical and non-clinical populations.
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