Body image and psychosocial outcomes in youth and young adults with differences of sex development: a multi-method study

Author:

Crerand Canice E123ORCID,Shehata Ayah1,Umbaugh Hailey1,Kapa Hillary M1,Hansen-Moore Jennifer2,Nahata Leena12ORCID,Buchanan Cindy4,Chen Diane567ORCID,Rausch Joseph1,Udaipuria Shivika1ORCID,Jayanthi Venkata R8,Chan Yee-Ming910,Pratt Keeley J11,Buschur Elizabeth12,Indyk Justin12,Tishelman Amy C13ORCID

Affiliation:

1. Center for Biobehavioral Health, The Abigail Wexner Research Institute, Nationwide Children’s Hospital , Columbus, OH, United States

2. Department of Pediatrics, The Ohio State University College of Medicine , Columbus, OH, United States

3. Department of Plastic Surgery, The Ohio State University College of Medicine , Columbus, OH, United States

4. Department of Psychiatry, Children’s Hospital of Colorado, University of Colorado Anschutz Medical Campus , Aurora, CO, United States

5. Potocsnak Family Division of Adolescent and Young Adult Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago , Chicago, IL, United States

6. Pritzker Department of Psychiatry and Behavioral Health, Ann & Robert H. Lurie Children’s Hospital of Chicago , Chicago, IL, United States

7. Departments of Psychiatry and Behavioral Sciences, and Pediatrics, Northwestern University Feinberg School of Medicine , Chicago, IL, United States

8. Department of Urology, The Ohio State University College of Medicine , Columbus, OH, United States

9. Division of Endocrinology, Boston Children’s Hospital , Boston, MA, United States

10. Department of Pediatrics, Harvard Medical School , Boston, MA, United States

11. Department of Human Sciences, College of Education and Human Ecology, The Ohio State University , Columbus, OH, United States

12. Department of Endocrinology, The Ohio State University College of Medicine and Nationwide Children’s Hospital , Columbus, OH, United States

13. Department of Psychology and Neuroscience, Boston College , Boston, MA, United States

Abstract

Abstract Objective Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment. Methods This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews. Results Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment. Conclusions Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.

Funder

Eunice Kennedy Shiver National Institute of Child Health and Human Development

Publisher

Oxford University Press (OUP)

Reference48 articles.

1. Early genital surgery in disorders/differences of sex development: Patients’ perspectives;Bennecke;Archives of Sexual Behavior,2021

2. Disorders or differences of sex development? Views of affected individuals on DSD terminology;Bennecke;The Journal of Sex Research,2021

3. Psychological adjustment in children and adults with congenital adrenal hyperplasia;Berenbaum;The Journal of Pediatrics,2004

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