Haberman M, Bush N, Young K, Sullivan K M
Oncology Nursing Society, Pittsburgh, PA.
Oncol Nurs Forum. 1993 Nov-Dec;20(10):1545-53.
Recently, clinicians and researchers alike have challenged the long-standing impression that survivors of bone marrow transplantation (BMT) experience a less than optimal quality of life (QOL). Despite the accumulating evidence suggesting that most adult survivors adjust relatively well within two to five years after BMT, little is known about the growing population of recipients living well beyond five years. This paper reports the design and qualitative components of a large study that used a cross-sectional, descriptive, mailed survey design. The aim of the study was to document systematically how 125 adult survivors of BMT (6-18.4 years post-transplant) perceived the quality of their lives. An eight-item, open-ended questionnaire was used to gather information on the reestablishment of life after BMT, demands of recovery, coping strategies, limitations imposed by BMT, current health problems, QOL, and concerns for the future. Content analysis of the verbatim responses indicated that most long-term survivors, despite the persistence of lingering side effects, perceive themselves as cured and well, leading full and meaningful lives. Nursing therapeutics can focus on providing accurate and timely information about the known long-range complications of BMT. Further research is needed to examine the entire issue of social support following BMT and to identify the special care requirements of the recipients (5%) who reported poor physical and mental health.
最近,临床医生和研究人员都对长期以来认为骨髓移植(BMT)幸存者生活质量欠佳的印象提出了质疑。尽管越来越多的证据表明,大多数成年幸存者在骨髓移植后的两到五年内适应得相对较好,但对于那些存活超过五年的越来越多的接受者,我们却知之甚少。本文报告了一项大型研究的设计和定性部分,该研究采用了横断面描述性邮寄调查设计。该研究的目的是系统地记录125名骨髓移植成年幸存者(移植后6 - 18.4年)对其生活质量的看法。一份包含八个项目的开放式问卷被用于收集有关骨髓移植后生活重建、康复需求、应对策略、骨髓移植带来的限制、当前健康问题、生活质量以及对未来担忧等方面的信息。对逐字记录的回答进行内容分析表明,大多数长期幸存者尽管仍存在持续的副作用,但认为自己已治愈且状况良好,过着充实而有意义的生活。护理治疗可以专注于提供有关骨髓移植已知远期并发症的准确及时信息。还需要进一步研究来探讨骨髓移植后的社会支持这一整体问题,并确定那些报告身心健康状况不佳的接受者(5%)的特殊护理需求。