Centre for Family Research, University of Cambridge, UK.
J Health Psychol. 2002 Sep;7(5):491-508. doi: 10.1177/1359105302007005628.
This article presents a tentative grounded theory, which can provide some explanation of variation in behaviour around predictive genetic testing (PGT) for Hereditary Non-Polyposis Colorectal Cancer (HNPCC), based on interviews with individuals (n = 55) from families with a clinical diagnosis of HNPCC, 12 of whom were followed through the PGT protocol. The theory is built around a core category of engagement, a newly constructed concept reflecting the degree of cognitive and emotional involvement with cancer risk in individuals from these families, and models the psychosocial process of engaging with cancer risk. The degree of engagement at the time of testing can explain variations in approaches and reactions to PGT. A series of social factors, many related to the experiences of family life, emerged as either facilitating or blocking the process of engaging with cancer risk; a series of psychological factors emerged as interacting in a recursive, dynamic manner with each other and with engagement status. The degree of engagement can change with the unfolding of time and events in family life. The theory of engagement (TE) provides an explanatory framework for understanding behaviour related to PGT for HNPCC, and can potentially be applied to research on risk perception in the social sciences more generally. In addition, the theory may have potential uses in the genetics clinic, in identifying individuals at risk of adverse reactions to PGT for cancer, thus enabling better targeting of genetic counselling resources.
本文提出了一个试探性的扎根理论，该理论基于对 55 名具有临床诊断的遗传性非息肉病性结直肠癌（HNPCC）家族的个体（n=55）的访谈，以及通过 PGT 协议随访的 12 名个体，为预测性遗传检测（PGT）在 HNPCC 周围行为变化提供了一些解释。该理论围绕着一个核心范畴“参与”构建，这是一个新构建的概念，反映了这些家庭中个体对癌症风险的认知和情感投入程度，并构建了与癌症风险接触的心理社会过程模型。测试时的参与程度可以解释对 PGT 的方法和反应的变化。一系列社会因素，许多与家庭生活的经历有关，被认为是促进或阻碍与癌症风险接触的过程；一系列心理因素以递归、动态的方式相互作用，并与参与状态相互作用。参与程度会随着家庭生活中时间和事件的展开而变化。参与理论（TE）为理解与 HNPCC 的 PGT 相关的行为提供了一个解释框架，并有可能更广泛地应用于社会科学中的风险感知研究。此外，该理论在遗传诊所可能具有潜在用途，用于识别对癌症 PGT 不良反应风险的个体，从而能够更好地针对遗传咨询资源。
