夫妇应对李-佛美尼综合征筛查负担和诊断不确定性：连接与独立。
Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence.
机构信息
a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
b Family Science Department, School of Public Health , University of Maryland , College Park , Maryland , USA.
出版信息
J Psychosoc Oncol. 2019 Mar-Apr;37(2):178-193. doi: 10.1080/07347332.2018.1543376. Epub 2018 Dec 28.
PURPOSE
Li-Fraumeni Syndrome (LFS) is an inherited tumor predisposition syndrome with lifetime cancer risks approaching 100% and evolving risk-management strategies. This study evaluated couples' coping with LFS-related burdens.
RESEARCH APPROACH
Constructivist grounded theory and anticipatory loss frameworks guided design and analysis.
SAMPLE AND METHODS
Twenty-six individuals enrolled in the NCI LFS Family Study completed semi-structured interviews with their partner during annual screening visits. An interdisciplinary team completed open and focused coding to identify patterns of coping and adaptation.
FINDINGS
Couples described living with ambiguous danger, a state of chronic apprehension resulting from LFS-associated uncertainties. Most couples communicated openly and alternated shouldering the burden, while others engaged in protective buffering to shield each other from distress and sustain the appearance of normalcy.
INTERPRETATION
Optimally, coping reduces shared psychosocial distress, yet some strategies may inadvertently increase disconnection.
IMPLICATIONS
Mental health support is critical for both partners coping with LFS, together and separately.
目的
李-佛美尼综合征（Li-Fraumeni Syndrome，LFS）是一种遗传性肿瘤易感性综合征，终生癌症风险接近 100%，并不断发展风险管理策略。本研究评估了夫妇应对 LFS 相关负担的情况。
研究方法
建构主义扎根理论和预期性损失框架指导了设计和分析。
样本和方法
26 名参加 NCI LFS 家族研究的个体在年度筛查就诊期间与他们的伴侣完成了半结构化访谈。一个跨学科团队完成了开放式和聚焦式编码，以识别应对和适应的模式。
结果
夫妇们描述了生活在模糊的危险中，这是一种由 LFS 相关不确定性引起的慢性担忧状态。大多数夫妇都进行了坦诚的沟通，并轮流承担负担，而另一些夫妇则采取了保护性缓冲措施，以防止彼此陷入困境，并维持正常的表象。
解释
应对策略最理想的情况是减轻共同的心理社会困扰，但有些策略可能会无意中增加脱节。
意义
心理健康支持对共同应对 LFS 的夫妇双方都至关重要，无论是一起还是分开。
Zotero 插件