Table 2.

Qualitative Results of Needs Assessment Survey (N = 19)

Qualitative Questions	Response Themes	Quote Examples	Count
When working with parents of a newborn/young child with a new DSD diagnosis, how often is “information sharing” (i.e., sharing information with close others to allow for social support) a specific target of therapy?	Always	Every time; Universally; Always	5
	Often	Very common; Often	8
	Sometimes	Sometimes; Moderate amount	3
What would help you feel even more comfortable in facilitating discussions?	More experience/education	More experience (I’m fairly new to DSD population); More education	6
	Having a written resource	Written material to provide family; Scripted language	6
	More Research	List of citations/research on social support in DSD	2
	Peer support for parents	Peer parent groups or mentors that can share personal experiences related to information sharing	2
	More time	More time with [the] family	1
What are barriers parents experience related to sharing information with close others (family/friends)?	Perceived stigma	Shame around sex/gender issues	14
	Lacking information/understanding	Unclear diagnosis; Lack of knowledge	7
	Privacy concerns	Protecting their child’s privacy	7
	Culture	Cultural and ethnic issues	2
	Denial/avoidance	Denial of diagnosis; Avoidance	2
	Interpersonal history	Strained past relationships	1
What are barrier providers experience related to facilitating parents sharing information with close others (family/friends)?	Education/training	Lack of confidence on what to say; lack of uniform understanding about the harm that can derive from secrecy	5
	Family factors	Hard to make specific recommendations without understanding more about family and community	5
	Parents do not want to share	Parents being adamant that no one will know	4
	Limited time	Inadequate time; Timing	3
	Ongoing diagnostic process	Fact that in many cases team is still gathering information, may be talking with parents about sharing incomplete information or information that may change over time	3
	Privacy/legal concerns	Fear of legal violations; Protecting the child’s privacy	2