Abstract
Little is known about the long-term health-related quality of life (HRQL) and mental health outcomes for women diagnosed with congenital adrenal hyperplasia (CAH), a disorder of sex development. Though recommendations for therapists exist, no research has empirically investigated women's experiences in therapy or their recommendations for therapy. Thus the purpose of the study was to investigate HRQL, mental health concerns of women with CAH, and patients' recommendations for therapists. A qualitative methodology, consensual qualitative research, was used to answer these questions. Eight women with CAH participated in the study. Results from their interviews revealed six domains: physical functioning, psychological functioning, interpersonal processes and relationships, healthcare experiences of women with CAH, recommendations for health care professionals, and systemic considerations. Domains were further broken down into categories with results yielding implications for both medical and mental health professionals and shedding light on issues related to normalcy, concerns both related and unrelated to CAH, sex, and gender, and highlighting effective supports and therapeutic interventions.
Highlights
Referred to as intersex conditions and affecting an estimated 50,000 Americans [1], disorders of sex development (DSD) and best practices of care have remained a controversial topic in the health community
Since congenital adrenal hyperplasia (CAH) is often first treated by pediatric endocrinologists, surgeons, and urologists, research on outcomes and interventions has primarily centered on issues most clinically relative to these fields, concerns related to sex of rearing, psychosexual outcomes thought to influence sex assignment such as gendered play in childhood, gender identity, and sexual orientation and on ethical considerations related to treatment [5]
Despite some common concerns related to their condition, our participants understood themselves as functioning normally. They indicated that for women with CAH, feelings of normalcy are not solely explained by physical or functional outcomes but that the social and emotional well-being aspects of health-related quality of life (HRQL) play an important role in recommendations for treatment. These findings provide critical information for both medical and mental health practitioners working with women diagnosed with CAH
Summary
Referred to as intersex conditions and affecting an estimated 50,000 Americans [1], disorders of sex development (DSD) and best practices of care have remained a controversial topic in the health community. While CAH’s impact on sexual and psychosexual development is wellestablished in the literature, its impact on health-related quality of life (HRQL), including mental health outcomes, is less clear. A multidisciplinary approach for the treatment of DSD has been recommended to include gynecological, genetic, neonatal, psychological, ethical, and social work specialists working with children, adults, and their families [6]. Specific to mental health specialists, psychotherapeutic recommendations have been proposed [7], yet little is known about what interventions are most efficacious or what specific quality of life and mental health concerns are most salient for women diagnosed with CAH. The aim of this study was to determine the manner
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