Exploring the meaning of chronic rejection after lung transplantation and its impact on clinical management and caregiving.

Exploring the meaning of chronic rejection after lung transplantation and its impact on clinical management and caregiving.
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探讨肺移植后慢性排斥的含义及其对临床管理和护理的影响。

DOI:
10.1016/j.jpainsymman.2009.12.014
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发表时间:
2010
影响因子:
4.7
通讯作者:
Pilewski,JosephM
Pilewski,JosephM
中科院分区:
医学2区
文献类型:
--
作者:
Song,Mi-Kyung;DevitoDabbs,AnnetteJ;Studer,SeanM;Arnold,RobertM;Pilewski,JosephM

文献摘要

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尽管文献继续将肺移植后的慢性排斥描述为不吉利的,没有已知的治疗方法,但没有研究调查家庭和临床医生护理人员对慢性排斥诊断的看法及其对临床护理过程的影响。我们从家庭(n=10)和临床医生(n=3)护理者的角度探讨慢性排斥的意义和影响。我们发现,家庭护理人员认为慢性排斥反应的发生是不可避免的、不可逆转的、不可预测的,并可追溯到移植前。临床医生认为慢性排斥是恶化和危险的先兆,并对告知接受者及其家庭照顾者有关诊断表示担忧。尽管治疗慢性排斥反应的护理责任和挑战增加,但其不可预测的过程和再次移植的前景在大多数临床医生和护理人员中灌输了稳定或治愈的希望,导致他们支持接受者的愿望,追求可能无效的治疗。直到接受者不再有能力,护理人员认为所有的治疗方案(包括重新移植)已经用尽,或者痛苦延长,护理人员不愿意停止特殊的治疗措施。护理人员认为,姑息治疗需要确定预后不良,而姑息治疗是临终关怀。因此,积极治疗的试验通常排除了姑息治疗。
Although the literature continues to portray chronic rejection after lung transplantation as ominous with no known treatment, no studies have examined family and clinician caregivers' perceptions of the diagnosis of chronic rejection and its impact on the course of clinical care. We explored the meaning and impact of chronic rejection from the perspective of family (n=10) and clinician (n=3) caregivers. We found that family caregivers considered the onset of chronic rejection to be inevitable, irreversible, unpredictable, and going back to pretransplant. Clinicians considered chronic rejection as a harbinger of deterioration and peril and expressed trepidation about informing recipients and their family caregivers about the diagnosis. Despite the heightened caregiving duties and challenges of treating chronic rejection, its unpredictable course and the prospect of retransplant instilled hope for stabilization or cure among most clinicians and caregivers, leading them to support recipients' wishes to pursue potentially futile treatments. Until recipients were no longer competent, caregivers believed all treatment options (including retransplant) had been exhausted, or suffering was prolonged, caregivers were reluctant to halt extraordinary treatment measures. Caregivers perceived that certainty regarding poor prognosis was required for palliative care and that palliative care was end-of-life care. Consequently, trials of aggressive treatment typically precluded palliative care.