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

被引:9
|
作者
Papadakis, Jaclyn L. [1 ,2 ]
Poquiz, Jonathan L. [2 ]
Buchanan, Cindy L. [3 ,4 ,5 ]
Chan, Yee-Ming [6 ,7 ]
Crerand, Canice E. [8 ,9 ]
Hansen-Moore, Jennifer [8 ,10 ]
Kapa, Hillary M. [9 ]
Nahata, Leena [8 ,9 ,11 ]
Pratt, Keeley J. [12 ]
Tishelman, Amy C. [13 ,14 ,15 ]
Chen, Diane [1 ,2 ,16 ,17 ]
机构
[1] Northwestern Univ, Dept Psychiat & Behav Sci, Feinberg Sch Med, Evanston, IL 60208 USA
[2] Ann & Robert H Lurie Childrens Hosp Chicago, Pritzker Dept Psychiat & Behav Hlth, 225 East Chicago Ave,POB 10, Chicago, IL 60611 USA
[3] Childrens Hosp Colorado, Aurora, CO USA
[4] Univ Colorado Anschutz Med Campus, Dept Surg, Aurora, CO USA
[5] Univ Colorado Anschutz Med Campus, Dept Psychiat, Aurora, CO USA
[6] Boston Childrens Hosp, Boston, MA USA
[7] Harvard Med Sch, Dept Pediat, Boston, MA 02115 USA
[8] Ohio State Univ, Coll Med, Columbus, OH 43210 USA
[9] Nationwide Childrens Hosp, Abigail Wexner Res Inst, Ctr Biobehav Hlth, Columbus, OH USA
[10] Nationwide Childrens Hosp, Dept Pediat Psychol, Columbus, OH USA
[11] Nationwide Childrens Hosp, Abigail Wexner Res Inst, Div Endocrinol, Columbus, OH USA
[12] Ohio State Univ, Coll Educ & Human Ecol, Columbus, OH 43210 USA
[13] Harvard Med Sch, Boston Childrens Hosp, Boston, MA 02115 USA
[14] Harvard Med Sch, Dept Psychiat, Boston, MA 02115 USA
[15] Harvard Med Sch, Endocrinol Div, Boston, MA 02115 USA
[16] Northwestern Univ, Feinberg Sch Med, Dept Pediat, Evanston, IL 60208 USA
[17] Ann & Robert H Lurie Childrens Hosp Chicago, Potocsnak Family Div Adolescent Med, Chicago, IL 60611 USA
关键词
AYA; DSD; fertility counseling; intersex conditions; qualitative; DISORDERS;
D O I
10.1037/cpp0000373
中图分类号
B849 [应用心理学];
学科分类号
040203 ;
摘要
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.
引用
收藏
页码:372 / 383
页数:12
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