Santos Paula I, Figueiredo Eurico, Gomes Inês, Sequeiros Jorge
Faculdade de Ciências Humanas e Sociais, Universidade Fernando Pessoa, Pr. 9 Abril 349, Porto, Portugal.
J Genet Couns. 2010 Dec;19(6):585-92. doi: 10.1007/s10897-010-9311-3. Epub 2010 Aug 3.
This study is an investigation of the impact of familial amyloid polyneuropathy type I (FAP I, ATTR V30M) on death anxiety and symbolic immortality. Templer and Drolet's scales were administered to 524 individuals: (1) 84 relatives at risk, (2) 92 relatives not at risk for FAP I; and (3) a control group (n = 348) with no known hereditary disease in their families. At-risk relatives had, on average, a higher score for death anxiety and a lower score for symbolic immortality, than either those not-at-risk or controls. There were no significant differences in scores on either measure for those not-at-risk versus controls. Being at risk increases death anxiety and threatens the sense of symbolic immortality and psychosocial wellbeing. This may be true for other serious hereditary disorders as well. Genetic counsellors should become familiar with these concepts, feel comfortable initiating discussions about death with their patients, and be able to identify and reinforce their patients' and family members' sense of symbolic immortality.
本研究旨在调查Ⅰ型家族性淀粉样多神经病（FAPⅠ，ATTR V30M）对死亡焦虑和象征性不朽的影响。对524名个体施测了坦普勒和德罗莱特量表：（1）84名有患病风险的亲属；（2）92名无FAPⅠ患病风险的亲属；以及（3）一个对照组（n = 348），其家族中无已知遗传病。与无患病风险的亲属或对照组相比，有患病风险的亲属平均死亡焦虑得分更高，象征性不朽得分更低。无患病风险的亲属与对照组在这两项测量中的得分均无显著差异。处于患病风险会增加死亡焦虑，并威胁象征性不朽感和心理社会幸福感。其他严重的遗传性疾病可能也是如此。遗传咨询师应熟悉这些概念，自如地与患者展开关于死亡的讨论，并能够识别和强化患者及其家庭成员的象征性不朽感。
