Parent Perceptions of Psychosocial Care for Children with Differences of Sex Development

Summary Short introduction/Background Children affected by differences/disorders of sex development (DSDs) and their families are vulnerable to significant risks across developmental stages that threaten quality of life and psychosocial functioning. Accordingly, both experts in DSD treatment and patient advocacy groups have endorsed the incorporation of psychosocial care into interdisciplinary management of DSD conditions. Objective This study assessed psychosocial needs and received services reported by parents of children with DSD treated at two large US academic medical centers. Specifically, differences in parents' perceptions of psychosocial service needs were compared between those who received or did not receive interdisciplinary care that included psychology/social work professionals. Study design In a cross-sectional study, sixty-four parents of children with DSD aged 0–19 years attending two major academic centers with interdisciplinary teams completed a questionnaire about their receipt and perception of 12 individual psychosocial services throughout their child's DSD treatment. Results Receipt of individual psychosocial services ranged from 27 to 81%. Most commonly, parents reported having a psychosocial provider explain medical terms and answer questions after talking with a doctor (81%), assist with words and terms to describe the condition and treatment (69%), and help navigate the hospital system (63%). Families positively endorsed psychosocial services, with 91–100% of services received rated as helpful. Parents of children who received care as part of an interdisciplinary team were significantly more likely to receive psychosocial services than those treated by single providers (e.g., urologists). Specific gaps in psychosocial care were noted in regard to access to mental health providers familiar with DSD, fertility counseling, and support with community advocacy (e.g., arranging for accommodations at the school or advocating on patient's behalf with the insurance company). Among families who had not received them, services most desired were assistance with words and terms to describe condition or treatment; explanation of medical terms and answering questions after meeting with a doctor; connection to resources such as books, pamphlets, websites, and support groups; and a central care coordinator for the medical team. Discussion and Conclusion Families value psychosocial services but are far less likely to receive services if they are not seen in an interdisciplinary clinic visit that includes a psychosocial provider. Families desire but often lack mental health, advocacy, and fertility-related support. This study highlights the need for sustained psychosocial follow-up across development, even in the absence of pressing medical concerns, to provide support and anticipatory guidance as needs and issues evolve. Extended Summary Table . Psychosocial services received by DSD interdisciplinary clinic visit (yes/no). Psychosocial service received Interdisciplinary DSD clinic visit p-value Yes No n % n % Emotional support for the family at diagnosis 24 63.2 4 15.4 0.0002 Strategies for talking with others about diagnosis 22 57.9 6 23.1 0.006 Ways to help the family talk with the child about diagnosis 26 68.4 6 23.1 0.0004 Central contact person or care coordinator 21 55.3 7 26.9 0.03 Emotional support as the child aged 26 68.4 4 16.0 Patient and family advocacy to the community (e.g., school, insurance company) 15 39.5 2 7.7 0.005 Connection to resources (e.g., books, support groups) 26 68.4 7 26.9 0.001 Mental health services with a provider who is knowledgeable about the condition 22 57.9 2 7.7 Individual to talk with the child about fertility 15 39.5 2 7.7 0.005 DSD, difference or disorder of sex development.