Courtesy stigma of parents of children with Down syndrome: Adaptation process and transcendent stage

Abstract

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.

Stressful experiences and coping strategies of parents of young children with Down syndrome: A qualitative study

“…Approximately one-half of the parents experienced a variety of obvious or ambiguous courtesy stigma, which arises from close connections to people with stigmatised characteristics exhibited by the birth of their children, such as devaluing or pitying remarks, discrimination, intrusive inquiries, staring, and blaming in society. Parents' ways of coping with stigma were similar to those reported in previous studies (Turner et al, 2007;Watanabe et al, 2021). They mostly tended to use pas- Consistent with the literature on parents of children with intellectual disabilities, our study presents parents' fear and anxiety centred on what will happen to their child with Down syndrome when they are no longer around to look after them (Davys et al, 2017;Griffith & Hastings, 2014).…”

“…Approximately one‐half of the parents experienced a variety of obvious or ambiguous courtesy stigma, which arises from close connections to people with stigmatised characteristics exhibited by the birth of their children, such as devaluing or pitying remarks, discrimination, intrusive inquiries, staring, and blaming in society. Parents' ways of coping with stigma were similar to those reported in previous studies (Turner et al, 2007; Watanabe et al, 2021). They mostly tended to use passive coping strategies, including concealing their child's diagnosis, not disclosing information about their child, avoiding social contact, or ignoring devaluing remarks or behaviours to struggle with the stigmatisation.…”

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review

“…x Watanabe et al, 2021 The present work aimed to evaluate the courtesy stigma of parents of children with DS by utilizing a qualitative study focused on their interpersonal relationships.…”

Sindrom Down Dalam Islam

“…Pengalaman psikososial negatif yang paling merugikan hubungan interpersonal adalah stigma yang dapat berupa kekerasan verbal atau fisik dan dapat terjadi dalam pendidikan serta penolakan kesempatan kerja yang dapat menyebabkan marginalisasi atau pengucilan sosial. 6 Menurut penelitian oleh Ashencaen Crabtree, stigma sosial terkait disabilitas seperti Sindrom Down juga lazim di negaranegara Timur Tengah, meskipun terdapat nilai-nilai Islam yang mempromosikan 'toleransi terhadap disabilitas'. Secara bersamaan, seperti dicatat oleh Ghaly, dunia Islam, bekerja sama dengan komunitas internasional, telah terlibat dalam pekerjaan tentang hak-hak disabilitas, yang secara umum menunjukkan tanggapan yang beragam terhadap disabilitas dalam masyarakat Islam.…”