TY - JOUR
T1 - Predictors of psychosocial distress in parents of young children with disorders of sex development
AU - Perez, Megan N.
AU - Delozier, Alexandria M.
AU - Aston, Christopher E.
AU - Austin, Paul
AU - Baskin, Laurence
AU - Chan, Yee Ming
AU - Cheng, Earl Y.
AU - Diamond, David A.
AU - Fried, Allyson
AU - Greenfield, Saul
AU - Kolon, Thomas
AU - Kropp, Bradley
AU - Lakshmanan, Yegappan
AU - Meyer, Sabrina
AU - Meyer, Theresa
AU - Nokoff, Natalie
AU - Palmer, Blake
AU - Paradis, Alethea
AU - Poppas, Dix
AU - Reyes, Kristy J.Scott
AU - Swartz, Jonathan M.
AU - Tishelman, Amy
AU - Wisniewski, Amy B.
AU - Wolfe-Christensen, Cortney
AU - Yerkes, Elizabeth
AU - Mullins, Larry L.
N1 - Publisher Copyright:
© 2019 by American UROLOGICAL ASSOCIATION EDUCATION AND RESEARCH, INC.
PY - 2019
Y1 - 2019
N2 - Purpose: We evaluated demographic, financial and support predictors of distress for parents of young children with disorders of sex development including atypical genital development, and characterized early parental experiences. This work extends our previous findings to identify those parents at risk for distress. Materials and Methods: Participants included mothers (76) and fathers (63) of a child (78) diagnosed with disorders of sex development characterized by moderate to severe genital atypia. Parents completed a demographic questionnaire, measures of anxious and depressive symptoms, quality of life, illness uncertainty and posttraumatic stress symptoms, and rated their satisfaction with the appearance of their child's genitalia. Results: Depressive and posttraumatic stress symptoms of caregivers were comparable to standardized norms while levels of anxious symptoms were below norms. A subset of parents reported clinically elevated symptoms. Overall 26% of parents reported anxious symptoms, 24% reported depressive symptoms and 17% reported posttraumatic stress symptoms. Levels of illness uncertainty were lower than those of parents of children with other chronic illnesses. Differences by parent sex emerged, with mothers reporting greater distress. Lower income, increased medical care and travel expenses, and having no other children were related to increased psychosocial distress. Conclusions: Early psychosocial screening is recommended for parents of children with disorders of sex development. Clinicians should be aware that financial burden and lack of previous parenting experience are risk factors for distress.
AB - Purpose: We evaluated demographic, financial and support predictors of distress for parents of young children with disorders of sex development including atypical genital development, and characterized early parental experiences. This work extends our previous findings to identify those parents at risk for distress. Materials and Methods: Participants included mothers (76) and fathers (63) of a child (78) diagnosed with disorders of sex development characterized by moderate to severe genital atypia. Parents completed a demographic questionnaire, measures of anxious and depressive symptoms, quality of life, illness uncertainty and posttraumatic stress symptoms, and rated their satisfaction with the appearance of their child's genitalia. Results: Depressive and posttraumatic stress symptoms of caregivers were comparable to standardized norms while levels of anxious symptoms were below norms. A subset of parents reported clinically elevated symptoms. Overall 26% of parents reported anxious symptoms, 24% reported depressive symptoms and 17% reported posttraumatic stress symptoms. Levels of illness uncertainty were lower than those of parents of children with other chronic illnesses. Differences by parent sex emerged, with mothers reporting greater distress. Lower income, increased medical care and travel expenses, and having no other children were related to increased psychosocial distress. Conclusions: Early psychosocial screening is recommended for parents of children with disorders of sex development. Clinicians should be aware that financial burden and lack of previous parenting experience are risk factors for distress.
KW - Disorders of sex development
KW - Parents
KW - Stress, psychological
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UR - http://www.scopus.com/inward/citedby.url?scp=85075812883&partnerID=8YFLogxK
U2 - 10.1097/JU.0000000000000424
DO - 10.1097/JU.0000000000000424
M3 - Article
C2 - 31268850
AN - SCOPUS:85075812883
SN - 0022-5347
VL - 202
SP - 1046
EP - 1051
JO - Journal of Urology
JF - Journal of Urology
IS - 5
ER -