Dataset Information

Fertility Discussions: Perspectives of Adolescents and Young Adults With Differences of Sex Development.

ABSTRACT:

Objective

Fertility-related health care and decision-making needs for youth with differences of sex development (DSD) are complex and vary by condition and the values and preferences of each individual and their partner and/or family. Discussing fertility implications can be a challenging aspect of clinician and family communication about a DSD diagnosis. This qualitative study assesses fertility-related communication experiences of adolescents and young adults (AYA) with DSD.

Method

Participants included 97 AYA with DSD ages 12-26 years (M = 18.5, SD = 3.9) who completed questionnaires on demographic and medical information and patient-clinician communication. A subsample of 33 AYA also completed semistructured interviews about experiences with fertility discussions.

Results

Two major themes, each with subthemes, were identified: (1) understanding of fertility related to (1a) one's own fertility status, (1b) reproductive and parenting options, and (1c) emotional reactions to one's own fertility status and (2) conversations about fertility related to (2a) reflections on conversations, (2b) barriers, and (2c) advice.

Conclusions

AYA perspectives in this study provide important information about how youth with DSD learn about their fertility status, the impact their fertility status has on them, and the fertility-related conversations they have with their providers and families. Specific recommendations for providers and parents or caregivers include the following: inform youth of their fertility status as early as possible; be direct but patient in delivering information; begin by giving basic information and provide more detail as the conversation unfolds; revisit the conversation over time to allow for further discussion or information-seeking; offer additional information or resources, including behavioral health resources.

SUBMITTER: Papadakis JL

PROVIDER: S-EPMC8932642 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature

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Publications

Fertility Discussions: Perspectives of Adolescents and Young Adults With Differences of Sex Development.

Papadakis Jaclyn L JL Poquiz Jonathan L JL Buchanan Cindy L CL Chan Yee-Ming YM Crerand Canice E CE Hansen-Moore Jennifer J Kapa Hillary M HM Nahata Leena L Pratt Keeley J KJ Tishelman Amy C AC Chen Diane D

Clinical practice in pediatric psychology 20201203 4

<h4>Objective</h4>Fertility-related health care and decision-making needs for youth with differences of sex development (DSD) are complex and vary by condition and the values and preferences of each individual and their partner and/or family. Discussing fertility implications can be a challenging aspect of clinician and family communication about a DSD diagnosis. This qualitative study assesses fertility-related communication experiences of adolescents and young adults (AYA) with DSD.<h4>Method< ...[more]

PMID: 35310824

Similar Datasets

Project description:BackgroundSurgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades.ObjectiveThe purpose of the current study is to provide an updated and empirical qualitative examination of the surgical experiences and responses to care of adolescents and young adults (AYA) with DSD in order to fill this gap in the literature and inform patient care.MethodsQualitative interviews were conducted with 37 AYA (ages 12-26) with DSD. Interviews were transcribed, coded, and analyzed thematically.ResultsThree major themes were identified: 1) knowledge related to surgery; 2) surgical and medical experience; and 3) psychosocial factors related to surgery. Results demonstrated that most AYA were not involved in the decision to pursue surgery and were observed to have varying levels of knowledge regarding their surgeries. Most participants in the current study had received a DSD-related surgery and the majority described having positive surgical experiences and few regrets. Nonetheless, AYA described both medical and psychosocial challenges related to their surgeries and recoveries and offered feedback on ways to improve the surgical process.DiscussionThe current study provides a qualitative examination of the surgical experiences of 37 AYA with DSD. Findings highlight the importance of regular and ongoing communication with providers to improve knowledge related to surgery during the decision-making process as well as after surgical intervention. Results underscore the benefits of multidisciplinary teams and the value of patient handouts and decision aids in assisting AYA in the decision to pursue surgical intervention. Other specific recommendations for providers include increased patient privacy during genital exams, greater emphasis on psychoeducation and pain management strategies, and the use of behavioral health services to assist with challenges and social support.ConclusionsThe decision to pursue surgical intervention in youth with DSD remains a complex and controversial issue, and more information regarding patients' perspectives on surgery is needed. The current study provides novel insights into patient experiences of surgical intervention and highlights the need for psychosocial support throughout the shared decision-making process.

Dataset Information

Fertility Discussions: Perspectives of Adolescents and Young Adults With Differences of Sex Development.

Objective

Method

Results

Conclusions

Publications

Fertility Discussions: Perspectives of Adolescents and Young Adults With Differences of Sex Development.

Similar Datasets

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