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Decisional Support Needed when Facing Tough Decisions: Survey of Parents with Children having Differences of Sex
Melissa Gardner1, William B Brinkman2,3, Meg Carley4
1Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI, USA.
Insights
Parents making decisions for children with differences of sex development (DSD) need support, especially regarding surgery and information sharing. They desire involvement in decision-making despite facing challenges like decisional conflict and regret.
Area of Science:
- Pediatric Endocrinology
- Genetics
- Medical Ethics
Background:
- Parents of infants and young children diagnosed with differences of sex development (DSD) face complex medical and psychosocial decisions.
- These decisions are often made early in the diagnostic process, without the child's input, and during a period of parental learning.
Purpose of the Study:
- To identify the key areas where parents of children with DSD require the most support in making critical management decisions.
- To understand parental preferences and challenges in decision-making for their child's DSD care.
Main Methods:
- A survey was administered to 34 parents of children receiving DSD care at three US children's hospitals.
- Participants identified clinical and psychosocial decisions, focused on a "tough" decision, and reported on factors affecting decision-making, preferences, conflict, and regret.
- Descriptive analyses were used to evaluate the collected data.
Main Results:
- Surgical decisions (97%) and information sharing (88%) were the most common and "tough" decisions reported by parents.
- A significant majority experienced decisional conflict (59%) and decision regret (74%), with nearly all (94%) citing interfering factors like fear of choosing the 'wrong' option.
- Parents strongly desired to be the primary decision-makers (79%) or to decide jointly with healthcare providers (21%), viewing providers and patient organizations as trustworthy information sources.
Conclusions:
- Parents of children with DSD navigate challenging medical, surgical, and psychosocial decisions, experiencing emotional distress and informational concerns.
- Despite these difficulties, parents are eager to be central to the decision-making process for their children.
- Healthcare providers should actively identify family needs and collaborate with parents to support their involvement in crucial DSD management decisions.
Introduction:
Parents of infants and young children newly diagnosed with differences of sex development (DSD) commonly face medical and psychosocial management decisions at a time when they are first learning about the condition and cannot consult their child for input. The aim of this study was to identify areas of greatest need for parental decisional support.
Methods:
34 parents of children receiving care for DSD at one of three US children's hospitals participated in a survey to learn what clinical and psychosocial decisions needed to be made on behalf of their child. Parents were then asked to identify and focus on a "tough" decision and respond to questions assessing factors affecting decision-making, decision-making preferences, decisional conflict, and decision regret. Descriptive analyses were conducted.
Results:
Decisions about surgery and aspects of sharing information about their child's condition with others were the two most frequently reported decisions overall, experienced by 97% and 88% of parents, as well as most frequently nominated as tough decisions. Many parents reported mild to moderate levels of decisional conflict (59%) and decision regret (74%). Almost all parents (94%) reported experiencing at least one factor as interfering with decision-making (e.g., "worried too much about choosing the 'wrong' option"). Parents universally reported a desire to be involved in decision-making - preferably making the final decision primarily on their own (79%), or together with their child's healthcare providers (21%). The majority of parents judged healthcare providers (82%) and patient/family organizations (58%) as trustworthy sources of information.
Discussion:
Parents of children with DSD encounter medical, surgical, and psychosocial management decisions. Despite difficulties including emotional distress and informational concerns (including gaps and overload), parents express strong desires to play key roles in decision-making on behalf of their children. Healthcare providers can help identify family-specific needs through observation and inquiry in the clinical context. Together with families, providers should focus on specific clinical management decisions and support parental involvement in making decisions on behalf of young children with DSD.
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