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Congruence-Incongruence Patterns in Alpha-1 Antitrypsin Deficiency Couples' Genetic Determinist Beliefs and Perceived Control over Genes: Implications for Clinical and Public Health Genomic Communication.α-1抗胰蛋白酶缺乏症夫妇的基因决定论信念与基因感知控制中的一致-不一致模式:对临床和公共卫生基因组沟通的启示
J Genet Couns. 2015 Jun;24(3):532-40. doi: 10.1007/s10897-014-9786-4. Epub 2014 Nov 21.
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精神性、疾病不可预测性、数学焦虑对诊断为 α-1 抗胰蛋白酶缺乏症个体的负性情绪和情绪管理应对的影响。

Spirituality, Illness Unpredictability, and Math Anxiety Effects on Negative Affect and Affect-Management Coping for Individuals Diagnosed with Alpha-1 Antitrypsin Deficiency.

机构信息

a Communication Arts and Sciences , The Pennsylvania State University.

b Health Policy and Administration , The Pennsylvania State University.

出版信息

Health Commun. 2018 Apr;33(4):363-371. doi: 10.1080/10410236.2016.1266576. Epub 2017 Jan 6.

DOI:10.1080/10410236.2016.1266576
PMID:28059573
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5533635/
Abstract

A growing number of genetic tests are included in diagnostic protocols associated with many common conditions. A positive diagnosis associated with the presence of some gene versions in many instances predicts a range of possible outcomes, and the uncertainty linked to such results contributes to the need to understand varied responses and plan strategic communication. Uncertainty in illness theory (UIT; Mishel, 1988, 1990) guided the investigation of efforts to feel in control and hopeful regarding genetic testing and diagnosis for alpha-1 antitrypsin deficiency (AATD). Participants included 137 individuals with AATD recruited from the Alpha-1 Research Registry who were surveyed about their subjective numeracy, anxiety about math, spirituality, perceptions of illness unpredictability, negative affect regarding genetic testing, and coping strategies about a diagnosis. Results revealed that experiencing more fear and worry contributed both directly and indirectly to affect-management coping strategies, operating through individual perceptions of illness unpredictability. The inability to predict the symptoms and course of events related to a genetic illness and anxiety regarding math heightened fear and worry. Spirituality lessened both illness unpredictability and negative affective responses to a diagnosis. Results affirm the importance of clinician and counselor efforts to incorporate attention to patient spirituality. They also illustrate the complexity associated with strategic efforts to plan communication about the different versions of a gene's effects on well-being, when some versions align with mild health effects and others with severe effects.

摘要

越来越多的基因检测被纳入与许多常见疾病相关的诊断方案中。在许多情况下,与某些基因版本存在相关的阳性诊断预测了一系列可能的结果,而与这些结果相关的不确定性导致了需要理解各种反应并制定战略沟通计划的需求。疾病不确定性理论(UIT;Mishel,1988 年,1990 年)指导了对感觉α-1 抗胰蛋白酶缺乏症(AATD)基因检测和诊断的控制感和希望感的研究。参与者包括从 Alpha-1 研究登记处招募的 137 名 AATD 患者,他们接受了关于主观算术能力、对数学的焦虑、灵性、对疾病不可预测性的看法、对基因检测的负面情绪以及对诊断的应对策略的调查。结果表明,体验更多的恐惧和担忧既直接又间接地影响了应对策略,通过个体对疾病不可预测性的看法发挥作用。无法预测与遗传疾病相关的症状和病程以及对数学的焦虑加剧了恐惧和担忧。灵性减轻了疾病的不可预测性和对诊断的负面情感反应。结果肯定了临床医生和顾问努力将对患者灵性的关注纳入其中的重要性。它们还说明了在规划关于基因对健康影响的不同版本的沟通时,与战略努力相关的复杂性,当某些版本与轻微的健康影响一致,而其他版本与严重的影响一致时。