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

• Published in: Journal of advanced nursing 2019-02, Vol.75 (2), p.277-290
• Main Authors: Sani, Abdurrahman Muhammad, Soh, Kim Lam, Ismail, Ismi Arif, Arshad, Mohd Mursyid, Mungadi, Ismaila Arzika, Yau, Samira Labaran, Soh, Kim Geok
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Ambiguity; Anthropology, Cultural; Coping strategies; Differences of sex development; disorders of sex development; Disorders of Sex Development - psychology; Ethnography; experiences; Female; Holistic approach; Holistic medicine; Humans; Intersexuality; Literature reviews; Male; meta‐ethnography; Middle Aged; Nurses; nursing experience; Psychosocial factors; Qualitative Research; qualitative studies; quality nursing care; Quality of life; Quality of Life - psychology; sex reassignment; Sex Reassignment Procedures - psychology; Systematic review; Young Adult
• ISSN: 0309-2402; 1365-2648; 1365-2648
• DOI: 10.1111/jan.13833

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. 目的 这项研究目的在于综合性发育障碍的患者体验。 背景 性发育障碍患者的生活质量在很大程度上取决于良好的心理社会管理和性心理管理。关于性发育障碍患者体验的文献缺乏定性型系统性综述。 设计 在此次综述中采取了定性型后民族志法中的7个步骤。 数据来源 截至2017年1月,系统搜索了以下电子数据库:全文数据库、斯高帕斯数据库、SAGE Online、累积索引护理及专职医疗文学、心理学文摘、联机医学文献分析和检索系统、威利在线图书馆,以及谷歌学术搜索。本综述的检索项目包括 “性发育障碍”、“雌雄间性”、“外生殖器双性发育”、“经验”、“定性研究”和“方法”。 综述方法 采用13项量表来评估所选研究的质量以及采用后民族志法原理来对其进行综合。 结果 12项研究符合合格标准。六大主题描述了性发育障碍的患者体验。这些包括一系列影响他们生活质量的身体上、心理上、社交中和性生活中的体验。生活在这种终身疾病下的个体采用了不同的应对策略。 结论 性发育障碍影响着这类患者的生活质量。护士的任务是为性发育障碍患者提供全方位照护,以提高他们的生活质量。因此,有必要探索护士在处理性发育障碍方面的体验。