"It's Part of Me, Not All of Me": Young Women's Experiences of Receiving a Diagnosis Related to Diverse Sex Development

Tove Lundberg; Katrina Roen; Angelica L Hirschberg; Louise Frisén

doi:10.1016/j.jpag.2015.11.009

"It's Part of Me, Not All of Me": Young Women's Experiences of Receiving a Diagnosis Related to Diverse Sex Development

J Pediatr Adolesc Gynecol. 2016 Aug;29(4):338-43. doi: 10.1016/j.jpag.2015.11.009. Epub 2015 Nov 27.

Authors

Tove Lundberg¹, Katrina Roen², Angelica L Hirschberg³, Louise Frisén⁴

Affiliations

¹ Department of Psychology, University of Oslo, Oslo, Norway. Electronic address: tove.lundberg@psykologi.uio.no.
² Department of Psychology, University of Oslo, Oslo, Norway.
³ Department of Women's and Children's Health, Karolinska Institutet, and Department of Obstetrics and Gynecology, Karolinska University Hospital, Stockholm, Sweden.
⁴ Child and Adolescent Psychiatry Research Center and Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.

PMID: 26639995
DOI: 10.1016/j.jpag.2015.11.009

Abstract

Study objective: To understand young women's experiences of receiving a diagnosis related to diverse sex development.

Design: A qualitative narrative analysis of interviews.

Setting: Karolinska University Hospital.

Participants: Nine women (aged 20-26 years) with complete androgen insensitivity syndrome, XY or XX gonadal dysgenesis.

Interventions: Semistructured interviews.

Main outcome measures: A narrative approach was used to analyze the interviews. This involved identification of individual narratives of receiving the diagnosis, as well as identification of key issues that were common across interviews.

Results: The analysis showed how participants' prediagnosis life experiences framed how medical information was perceived upon diagnosis. All participants had been informed about their condition before the study, but not all remembered the name of their diagnosis. Participants described positive characteristics of health professionals, such as being flexible and able to adapt to patients' individual needs. Clinicians' strategies, such as normalizing patients' experiences, were usually perceived as supportive, but were not always considered helpful. After the diagnosis, participants were worried about potential social, practical, and philosophical issues.

Conclusion: This research highlighted the importance of clinicians taking an exploratory and individualized approach to the sensitive process of disclosing a diagnosis related to diverse sex development to young adults. There are various strategies health professionals can use that might help young people to develop their knowledge about their condition: (1) repeating information to help the patient remember; (2) using language that is not too medicalized; and (3) communicating in a way that is meaningfully connected to patients' everyday lives.

Keywords: Androgen insensitivity syndrome; Diagnosis; Disclosure; Disorders of sex development; Gonadal dysgenesis; Intersex conditions; Narrative analysis; Patient-centered care; Young adult.

MeSH terms

Adult
Androgen-Insensitivity Syndrome / diagnosis
Androgen-Insensitivity Syndrome / psychology*
Attitude of Health Personnel
Disclosure
Female
Gonadal Dysgenesis, 46,XX / diagnosis
Gonadal Dysgenesis, 46,XX / psychology*
Gonadal Dysgenesis, 46,XY / diagnosis
Gonadal Dysgenesis, 46,XY / psychology*
Health Knowledge, Attitudes, Practice*
Humans
Male
Qualitative Research
Self Concept*
Young Adult