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Special Parents for “Special” Children? The Narratives of Health Care Providers and Parents of Intersex Children


De Clercq, Eva; Streuli, Jürg (2019). Special Parents for “Special” Children? The Narratives of Health Care Providers and Parents of Intersex Children. Narrative Inquiry in Bioethics, 9(2):133-147.

Abstract

Decisions on the clinical management of children with an intersex condition heavily depend on the kind of information parents receive from healthcare professionals. This paper aims to explore this influence by analyzing the stories of parents and care providers. The presented data come from 19 semi-structured interviews with parents of intersex children and healthcare professionals specializing in intersex conditions in Switzerland and Germany. Arthur Frank’s narrative framework was used to analyze the stories and sort out which kind of cultural threads were available to participants to make sense of their experience. Although many healthcare providers discouraged early genitoplasty, they believed that the decision not to operate required unique parenting skills, which few parents possess. This vision was shared by the parents in our sample. Some parents also projected this specialness upon their children, viewing the condition as a special gift, and as a possibility of personal growth.

Abstract

Decisions on the clinical management of children with an intersex condition heavily depend on the kind of information parents receive from healthcare professionals. This paper aims to explore this influence by analyzing the stories of parents and care providers. The presented data come from 19 semi-structured interviews with parents of intersex children and healthcare professionals specializing in intersex conditions in Switzerland and Germany. Arthur Frank’s narrative framework was used to analyze the stories and sort out which kind of cultural threads were available to participants to make sense of their experience. Although many healthcare providers discouraged early genitoplasty, they believed that the decision not to operate required unique parenting skills, which few parents possess. This vision was shared by the parents in our sample. Some parents also projected this specialness upon their children, viewing the condition as a special gift, and as a possibility of personal growth.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Scopus Subject Areas:Health Sciences > General Medicine
Uncontrolled Keywords:General Medicine
Language:English
Date:1 January 2019
Deposited On:07 Feb 2020 16:20
Last Modified:29 Jul 2020 13:39
Publisher:Johns Hopkins University Press
ISSN:2157-1740
OA Status:Closed
Publisher DOI:https://doi.org/10.1353/nib.2019.0026
PubMed ID:31447452

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