Waldron Rebecca, Malpus Zoey, Shearing Vanessa, Sanchez Melissa, Murray Craig D
a Faculty of Health & Medicine , Lancaster University , Lancaster , UK.
b University Hospital of South Manchester NHS Foundation Trust , Manchester , UK.
Disabil Rehabil. 2017 Sep;39(19):1976-1982. doi: 10.1080/09638288.2016.1213896. Epub 2016 Sep 24.
End stage heart failure and transplant present great opportunities and challenges for patients of all ages. However, young adulthood may present additional specific challenges associated with the development of identity, career and romantic relationships. Despite recognition of greater mortality rates in young adults, consideration of the experience of transplant during this life stage has been largely overlooked in the literature. The aim of this study was to explore the experience of heart transplant in young adults.
Interviews were conducted with nine participants across three transplant services in the United Kingdom and the data subject to interpretative phenomenological analysis.
Analysis identified three themes. "Separating from illness" and "working toward normality" involved limiting the influence of illness on identity, as well as reengaging with typical functioning in young adulthood. "Integrating transplant into identity" involved acknowledging the influence of living with a shortened life expectancy.
The need for support that recognizes specific challenges of transplant as a young adult is discussed (e.g. the development of age specific end of life pathways, improved communication between transplant recipients, their families and teams), including consideration of the impact of societal discourses (e.g. gift of life) which provided additional challenges for patients. IMPLICATIONS FOR REHABILITATION Heart transplant presents specific challenges according to the recipient's life stage. The needs of young adult recipients should be considered. Transplant professionals should consider providing opportunities for peer support and addressing the identities and values of young adult transplant recipients during rehabilitation.
终末期心力衰竭及心脏移植对各年龄段患者而言都带来了巨大的机遇与挑战。然而,青年期可能会出现与身份认同、职业及恋爱关系发展相关的额外特殊挑战。尽管人们认识到青年人心力衰竭死亡率更高,但该生命阶段心脏移植经历在文献中基本被忽视了。本研究旨在探究青年人心脏移植的经历。
对英国三个移植服务机构的九名参与者进行了访谈,并对数据进行了解释性现象学分析。
分析确定了三个主题。“与疾病分离”和“努力恢复正常”包括限制疾病对身份认同的影响,以及重新参与青年期的正常功能活动。“将移植融入身份认同”包括承认预期寿命缩短的生活带来的影响。
讨论了针对认识到青年期移植特殊挑战的支持需求(例如制定针对特定年龄的临终路径、改善移植受者及其家人与团队之间的沟通),包括考虑社会话语(如生命的馈赠)的影响,这给患者带来了额外挑战。对康复的启示心脏移植根据受者的生命阶段带来特定挑战。应考虑青年期受者的需求。移植专业人员应考虑提供同伴支持的机会,并在康复过程中关注青年期移植受者的身份认同和价值观。