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Shaping Parents: Impact of Contrasting Professional Counseling on Parents' Decision Making for Children with Disorders of Sex Development

Authors


  • Grants/fellowships: The Käthe-Zingg-Schwichtenberg-Fonds provided financial support for this project. Jürg Streuli holds a grant from the Swiss Academy of Medical Sciences. Johannes Huber received a Mildred Scheel fellowship from German Cancer Aid.

Corresponding Author: Jürg C. Streuli, MD, University of Zürich, Institute of Biomedical Ethics, Pestalozzistrasse 24, 8032 Zürich, Switzerland. Tel: +41 44,634 83 74; Fax: +41 44,634 83 89; E-mail: streuli@ethik.uzh.ch

Abstract

Introduction

The management of disorders or differences of sex development (DSD) remains complex, especially with respect to parents' decision for or against early genitoplasty. Most parents still tend to disfavor postponing surgery until the child is old enough to provide consent.

Aim

To identify the determinants of parental decisions for or against early sex assignment surgery in DSD children, and in particular to assess the influence of contrasting behavior of health-care professionals and the information they dispense.

Methods

Preliminary data analysis from a focus group identified two broad approaches to counseling information. Two six-minute counseling videos were produced on this basis: one medicalized, by an endocrinologist, the other demedicalized, by a psychologist. Third-year medical students (N = 89) were randomized to watch either video as prospective parents and report its impact on their decision in a self-administered questionnaire.

Main Outcome Measures

Statistical analysis of questionnaire responses regarding decisions for or against surgery, including self-assessed impact of potential determinants.

Results

Thirty-eight of eighty-nine “parents” (43%) chose early surgery for “their” child, including 27/41 “parents” (66%) shown the medicalized video vs. 11/48 (23%) shown the demedicalized video (P < 0.001). Desired aims for “their” child also differed significantly depending on the counseling approach viewed. Yet “parents” perceived their personal attitudes on a four-point Likert scale as the main influence on their decision although their “attitude” was significantly shaped by the video.

Conclusions

Parental decisions concerning early sex assignment surgery for DSD children depend on the health professional counseling received, to a degree of which neither parents nor professionals appear fully aware. In the absence of conclusive data for or against early surgery, there is a danger of medicalized or demedicalized parentalism resulting in irreversible and inadequately grounded decisions, regardless of the consensus statement of 2005 and the subsequent call for multidisciplinary management. Streuli JC, Vayena E, Cavicchia-Balmer Y, and Huber J. Shaping parents: Impact of contrasting professional counseling on parents' decision making for children with disorders of sex development. J Sex Med 2013;10:1953–1960.

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