A survey of healthcare professionals' perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development. Issue 1 (February 2023)

• Record Type: Journal Article
• Authors: Suorsa-Johnson, Kristina I.; Gardner, Melissa D.; Brinkman, William; Carley, Meg; Gruppen, Larry; Liang, Noi; Lightfoot, Sophie; Pinkelman, Kendra; Speiser, Phyllis W.; VanderBrink, Brian; Wisniewski, Jessica; Sandberg, David E.; Stacey, Dawn
• Is Part Of: Journal of pediatric urology. Volume 19:Issue 1(2023)
• Page Start: 39
• Page End: 49
• Publication Date: 2023-02
• Subjects: Disorders of sex development -- Differences of sex development -- Intersex -- Decisional needs assessment -- Shared decision-making -- Decisional conflict; DSD Disorders/differences of sex development -- HCP Healthcare professionals -- SDM Shared decision making; Pediatric urology -- Periodicals; Urologic Diseases -- Periodicals; Urogenital Diseases -- Periodicals; Urologic Surgical Procedures -- Periodicals; Child; Infant; Urologie pédiatrique -- Périodiques; Appareil urinaire -- Maladies -- Périodiques; Pédiatrie; Urologie; Pediatric urology; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); Electronic journals; Periodicals; Electronic journals; 618.926
• DOI: 10.1016/j.jpurol.2022.09.015
• Languages: English
• ISSNs: 1477-5131

Abstract

Summary: 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.