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Decisional Regret Among Caregivers of Infants with Differences of Sex Development Reared as Male.
Fisher, Rachel S; Datillo, Taylor M; Baskin, Laurence S; Cheng, Earl Y; Kolon, Thomas; Nokoff, Natalie J; Poppas, Dix P; Reyes, Kristy J; Mullins, Larry L; Wisniewski, Amy B.
Afiliación
  • Fisher RS; Oklahoma State University, Department of Psychology, Center for Pediatric Psychology, Stillwater, OK.
  • Datillo TM; Oklahoma State University, Department of Psychology, Center for Pediatric Psychology, Stillwater, OK.
  • Baskin LS; University of California San Francisco Medical Center, Department of Urology, San Francisco, CA.
  • Cheng EY; Ann & Robert H. Lurie Children's Hospital of Chicago, Department of Urology, Chicago, IL.
  • Kolon T; Children's Hospital of Philadelphia, Division of Urology, Philadelphia, PA.
  • Nokoff NJ; University of Colorado Anschutz Medical Campus, Department of Pediatrics, Division of Endocrinology, Aurora, CO.
  • Poppas DP; New York Presbyterian Weill Cornell Medicine, Department of Urology, Komansky Children's Hospital, New York, NY; and.
  • Reyes KJ; Cook Children's Medical Center, Department of Pediatric Urology, Fort Worth, TX.
  • Mullins LL; Oklahoma State University, Department of Psychology, Center for Pediatric Psychology, Stillwater, OK.
  • Wisniewski AB; Oklahoma State University, Department of Psychology, Center for Pediatric Psychology, Stillwater, OK.
J Dev Behav Pediatr ; 44(3): e225-e230, 2023 04 01.
Article en En | MEDLINE | ID: mdl-36729523
OBJECTIVE: Differences of sex development (DSD) are congenital conditions in which individuals are discordant in their chromosomal, phenotypic, and/or gonadal sex. Treatment of DSD can involve surgical intervention to external genitalia to make anatomy seem male-typical (i.e., male genitoplasty). Caregiver-perceived decisional regret regarding young boys with DSD was explored quantitatively and qualitatively. METHOD: Participants (N = 39) were caregivers of infants (N = 23) diagnosed with DSD (mean age = 8.9 months, standard deviation = 5.9 months) reared male participating in a longitudinal investigation of psychosocial outcomes. Qualitative data were collected at 6 to 12 months after baseline enrollment to evaluate caregiver decision-making corresponding to levels of regret concerning their child's treatment. All but one infant received genital surgery before caregiver reporting on their decisional regret. Quantitative exploratory analyses evaluated longitudinal predictors of decisional regret at 6 to 12 months. RESULTS: When completing a write-in item inquiring about decision-making and potential regret, most caregivers (n = 16, 76%) reported that their child's genital surgery was their first medical decision. Two caregivers referenced gender assignment as a decision point. One-third of caregivers reported some level of decisional regret (33%), with 67% reporting no regret. No hypothesized predictors of decisional regret were statistically significant. CONCLUSION: Many caregivers of infants with DSD reared male view genital surgery as a first health care decision. Approximately one-third of caregivers reported some level of decisional regret. Further research is warranted to explore long-term decisional regret; it will be particularly important to investigate the decisional regret of patients with DSD.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidadores / Toma de Decisiones Tipo de estudio: Prognostic_studies / Qualitative_research Límite: Child / Humans / Infant / Male Idioma: En Revista: J Dev Behav Pediatr Año: 2023 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidadores / Toma de Decisiones Tipo de estudio: Prognostic_studies / Qualitative_research Límite: Child / Humans / Infant / Male Idioma: En Revista: J Dev Behav Pediatr Año: 2023 Tipo del documento: Article Pais de publicación: Estados Unidos