Decisional Needs of Parents Facing Decisions for their Infant Born with a Disorder/Difference of Sex Development: A Survey of Healthcare Professionals
Kristina Suorsa-Johnson, PhD1, William Brinkman, MD, MEd, MSc, FAAP2, Meg Carley, BSc3, Melissa D. Gardner, MA1, Larry Gruppen, PhD4, Sophie Lightfoot, RN5, Phyllis W. Speiser, MD6, David E. Sandberg, PhD1, Dawn Stacey, RN, PhD, FCAHS, FAAN5.
1University of Michigan, Ann Arbor, MI, USA, 2University of Cincinnati College of Medicine, Cincinnati, OH, USA, 3Ottawa Hospital Research Institute, Ottawa, ON, Canada, 4University of Michigan Medical School, Ann Arbor, MI, USA, 5University of Ottawa, Ottawa, ON, Canada, 6Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA.
BACKGROUND: Parents of infants born with disorders/differences of sex development (DSD) face many complex and value-sensitive decisions. As a result, shared decision making (SDM) is recommended. SDM is a collaborative process where healthcare professionals (HCPs) and the patient/parent(s) actively engage in decision-making by discussing the best available evidence on treatment options, potential benefits and harms, and determine a preferred option by exploring patient/parents’ values for option outcomes. As part of a larger project designed to develop SDM-focused interventions to support parents of young children with a DSD, this study aimed to determine HCPs’ perceptions of parental decision-making needs when an infant is born with a DSD.
METHODS: A cross-sectional electronic survey, based on the Ottawa Decision Support Framework, was conducted between October 2020-February 2021. Survey domains included: common DSD decisions, manifestations of parents’ decisional needs, and resources and approaches to support parental decision-making. Eligible participants were HCP experts (n = 28; 90% response rate) working within specialty DSD centers in the US. Up to 3 reminders were sent. Descriptive analyses were conducted.
RESULTS: All (100%) respondents reported parents experience manifestations of decisional conflict including feeling unsure, worrying about what could go wrong, and fear of choosing a “wrong” irreversible option (see Figure 1). Most (>80%) reported parents experience strong emotions interfering with their receptivity to information or deliberation. The majority identified inadequate parental knowledge as a barrier to decision-making (>60%) coupled with information overload (>90%). Participants rated three factors as “very” important for effective decision making: parents having information on benefits, harms, and other features of options (93%), having information about all the available options (89%), and having access to providers to discuss the decision (86%). Providers were divided on the importance of parents identifying clear values for option outcomes with 54% rating it as “very” important and 46% rating it as “somewhat” important. The majority (59-100%) endorsed using a variety of approaches to support parents making decisions. Having access to patient decision aids was not rated as “very” important (39%).
CONCLUSIONS: Overall, HCPs had positive attitudes toward supporting parental participation in SDM. Through analysis, we identified some areas for better supporting parents’ decisional needs: a) recognizing and addressing parental emotional distress and informational overload at a time when parents need to consider options for their infant; and b) the need for HCPs to prioritize and integrate values clarification in decision-making encounters with parents. These findings reflect HCP perspectives of parental decision-making needs and indicate HCPs’ attitudes that need to be addressed to promote SDM within pediatric DSD. 
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