Department of Clinical Genetics, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Institute for Human Life Innovation, Ochanomizu University, Tokyo, Japan.
J Genet Couns. 2022 Jun;31(3):746-757. doi: 10.1002/jgc4.1541. Epub 2021 Dec 24.
Courtesy stigma, which arises from close connections to people with stigmatized characteristics, negatively affects interpersonal relations. This study aimed to evaluate courtesy stigma and the adaptation process of parents of children with Down syndrome based on semi-structured interviews with 23 Japanese parents. The interview themes were (a) negatively perceived interpersonal experiences and coping strategies; (b) information disclosure and others' responses; and (c) positively perceived interpersonal experiences. The interview data were transcribed and analyzed based on a grounded theory approach. The results suggested that parents perceived and experienced multidimensional courtesy stigma, and they used various coping strategies categorized in combinations of passive-active and internal-external. All parents disclosed information about their child's diagnosis to others, and reverse disclosure (i.e., revealing own relations with people with disabilities) was characteristically observed thereafter. Through active interaction and reflection, the parents cultivated social relationships, compassion, world views, and community involvement, which led to the transcendent stage. However, internal conflict as a mediator between people with and without Down syndrome re-emerged even after achieving the transcendent stage. These findings could help to develop interventions in genetic counseling for parents to deal with interpersonal relationship difficulties.
礼貌污名是指与具有污名特征的人密切相关而产生的负面效应,会影响人际关系。本研究旨在通过对 23 名日本家长进行半结构化访谈,评估唐氏综合征患儿家长的礼貌污名及其适应过程。访谈主题包括:(a)负面人际体验和应对策略;(b)信息披露和他人反应;(c)积极的人际体验。访谈数据根据扎根理论方法进行转录和分析。结果表明,家长感知和体验到多维礼貌污名,并采用了被动-主动和内-外组合的各种应对策略。所有家长都向他人披露了孩子的诊断信息,此后通常会出现反向披露(即透露自己与残疾人士的关系)。通过积极的互动和反思,家长们培养了社会关系、同情心、世界观和社区参与意识,从而达到超越阶段。然而,即使在达到超越阶段后,作为具有和不具有唐氏综合征人群之间的中介的内在冲突仍然存在。这些发现有助于为家长在遗传咨询中应对人际关系困难制定干预措施。