Abstract:
Guidelines for the clinical management of individuals born with disorders of sexual development (DSD) were established with the publication of the 2006 DSD Consensus Statement. The purpose of this study was to explore the experiences of parents of children born with ambiguous genitalia due to DSD and to examine their perceptions of the medical care they received in relation to the DSD Consensus Statement. We conducted semi-structured telephone interviews with eight parents whose children were born with ambiguous genitalia who were between the ages of three months and ten years. Five main themes emerged from the interviews: 1) communication with healthcare professionals (HCPs), 2) experience and expertise of HCPs, 3) coordination of care, 4) sources of psychosocial support, and 5) role of the Internet for information. While parents reported generally positive experiences with regard to the experience and expertise of their HCPs, they reported an almost equal number of negative as positive experiences regarding communication. Only two parents reported receiving their medical care through an established specialized multidisciplinary team. Most parents assembled their own medical team with variable success in coordinating the care among the different specialists. Psychosocial care provided by mental health staff with expertise in DSD was available only to parents who received their care through established multidisciplinary teams. The Internet played an important role for most parents by providing peer support, guidance in decision-making, and education. Our findings suggest that increased availability of established multidisciplinary teams and better communication between parent and HCPs could improve care and relieve stress placed on families.
