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. 2023 Feb;19(1):39-49.
doi: 10.1016/j.jpurol.2022.09.015. Epub 2022 Sep 28.

A survey of healthcare professionals' perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development

Kristina I Suorsa-Johnson  1 , Melissa D Gardner  2 , William Brinkman  3 , Meg Carley  4 , Larry Gruppen  5 , Noi Liang  6 , Sophie Lightfoot  7 , Kendra Pinkelman  6 , Phyllis W Speiser  8 , Brian VanderBrink  9 , Jessica Wisniewski  6 , David E Sandberg  10 , Dawn Stacey  11
Affiliations

A survey of healthcare professionals' perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development

Kristina I Suorsa-Johnson et al. J Pediatr Urol. 2023 Feb.

Abstract

Introduction: Parents of infants born with differences in sex development (DSD) face many difficult decisions. As part of a larger project designed to develop educational interventions to promote shared decision making, this study assessed healthcare professionals' (HCPs) perceptions of parental decision-making needs when an infant is born with a DSD.

Methods: A cross-sectional web-based survey following the Ottawa Decision Support Framework was conducted in two waves, between October 2020 and June 2022. Survey domains included: common DSD decisions, indicators of parents' decisional needs, and resources and approaches to support parental decision making. Eligible participants were HCPs working within interprofessional pediatric DSD centers in the USA. Up to three reminders were sent. Descriptive analysis was conducted.

Results: 71 HCPs participated; most (>90%) reported parents experience signs of decisional conflict including feeling unsure, worrying about what could go wrong, and fear of choosing a "wrong," irreversible option. The majority (90%) reported parents experience strong emotions interfering with their receptivity to information or deliberation. The majority (>70%) identified inadequate parental knowledge of the DSD as a barrier to decision making, coupled with information overload (>90%). HCPs rated several factors as "very" important, including: parents having information on benefits, harms, and other features of options (93%), having information about all the available options (87%), and having access to providers to discuss the options (84%). Providers endorsed using a variety of approaches to support parents' decision making; however, access to decision aids was not universally rated as highly important (very, 44%; somewhat, 46%; a little, 10%).

Implications: Overall, HCPs expressed favorable attitudes toward supporting active parental participation in medical decision making. Opportunities for enhanced support of shared decision making included: a) recognizing and addressing parental emotional distress and informational overload at a time when parents need to consider complex options for their infant or young child; and b) the need for HCPs to encourage values clarification in decision-making encounters with parents.

Keywords: Decisional conflict; Decisional needs assessment; Differences of sex development; Disorders of sex development; Intersex; Shared decision-making.

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Conflict of interest statement

Declarations of interest: None.

Figures

Summary Figure.
Summary Figure.
Factors hindering parental decision making. Note. * = “Worry about others finding out” and “Feeling anxious about how others will respond.”
Figure 1.
Figure 1.
Factors hindering high-quality decision making.
See this image and copyright information in PMC

Comment in

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