Experiences of people living with disorders of sex development and sex reassignment: Meta-ethnography of qualitative studies

J Adv Nurs. 2019 Feb;75(2):277-290. doi: 10.1111/jan.13833. Epub 2018 Sep 17.

Abstract

Aim: The aim of this study was to synthesize the experiences of people with disorders of sex development.

Background: The quality of life of people with disorders of sex development depends largely on the availability of good psychosocial and psychosexual management. There is a lack of qualitative systematic reviews of the literature on the experiences of people with disorders of sex development.

Design: The seven steps of qualitative meta-ethnography were employed in this review.

Data sources: The following electronic databases were systematically searched until January 2017: Science Direct, Scopus, Sage online, CINAHL, PsycINFO, Medline, Wiley Online Library, and Google Scholar. Search terms for this review were "disorders of sex development," "intersex," "ambiguous genitalia," "experiences," "qualitative study," and "method".

Review method: A 13-item scale was applied to evaluate the quality of the selected studies and synthesized using the principles of meta-ethnography.

Findings: Twelve studies met the eligibility criteria. Six major themes described the experiences of people with disorders of sex development. These included a range of physical, psychological, social, and sexual experiences which affect their quality of life. Different coping strategies were employed by individuals who live with the lifelong condition.

Conclusion: Disorders of sex development affect the quality of life of people living with these disorders. Nurses are tasked with providing holistic care for people with disorders of sex development in order to improve their quality of lives. As such, there is a need to explore the experiences of nurses in the management of disorders of sex development.

Keywords: disorders of sex development; experiences; meta-ethnography; nurses; nursing experience; qualitative studies; quality nursing care; sex reassignment.

Publication types

  • Meta-Analysis
  • Review

MeSH terms

  • Adolescent
  • Adult
  • Anthropology, Cultural*
  • Disorders of Sex Development / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Qualitative Research
  • Quality of Life / psychology*
  • Sex Reassignment Procedures / psychology*
  • Young Adult