Parents of Children with Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study

Background and Objectives. Health communication is a critical aspect of care for both providers and recipients having a direct influence on engagement and outcomes. Communicating which in this context includes talking and listening in order to share information or support young women to understand their DSD can be difficult especially since the topic area is sensitive. Methods. In this qualitative study thirteen young women (aged 14–19 years) with a disorder of sex development who engaged with health care professionals were purposively recruited between 2011 and 2012 from three specialist centres across the United Kingdom. The young women either were interviewed or completed a diary about their experiences of communication with a range of health care professionals. An interpretative phenomenological approach was used to analyse these data. Results. By analysis of data the young women were able to clearly articulate the qualities and skills health professional needed in relation to communication. Two main categories focused on the duty in which professionals have to share information and their role in supporting young women to manage this information. Discussion and Conclusion. The study results revealed that these young women with a DSD expected to meet skilled professionals who could recognise the emotional aspects of dialogues in the short and longer term.

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Development of a strategy of physician-patient relationship for improving care for patients with disorders of sex development: a qualitative study

Sao Paulo Medical Journal ◽

10.1590/1516-3180.2015.01750309 ◽

2016 ◽

Vol 134 (4) ◽

pp. 300-305 ◽

Cited By ~ 1

Author(s):

Mariana Telles-Silveira ◽

Felicia Knobloch ◽

Claudio Elias Kater

Keyword(s):

Qualitative Study ◽

Group Dynamics ◽

Disorders Of Sex Development ◽

Medical Team ◽

Physician Patient Relationship ◽

Postgraduate Students ◽

Sex Development ◽

Attending Physicians ◽

Physician Patient ◽

The Relationship

ABSTRACT: CONTEXT AND OBJECTIVE: Care for patients with disorders of sex development (DSD) should be provided in integrated-care centers by a multidisciplinary team. Implementation of this project within the teaching clinic routine presents several challenges: 1) difficulties in relationships between the medical team and patients and their families; 2) age, ethnic and cultural differences; 3) DSD-related prejudice; and 4) physicians' anxiety. We report on a psychologist's work strategy that focused on creating arrangements that could contribute towards development of the relationship between the medical team and patients and their families, as a way of preparing the clinical staff to manage treatment of adult DSD patients. DESIGN AND SETTING: Prospective qualitative study. METHODS: Between February 2010 and April 2015, we conducted a qualitative study in the Adrenal Outpatient Clinic of Escola Paulista de Medicina (São Paulo, Brazil), based on interviews, team discussions and group dynamics with resident physicians, postgraduate students and attending physicians. RESULTS: Implementation of the project allowed residents to build a story of differentiated care for their patients, thus facilitating dialog between them and making it possible to address taboo topics. Sequential care provided by the same resident led patients to feel that their doctor cared for them, with individuality, continuity and a sense of interest in their story. CONCLUSION: Presence of a psychologist in the outpatient routine enabled inclusion of subjective factors in the routine of medical consultations, thus broadening the notion of healthcare for patients with DSD, facilitating bonds and providing support for difficulties faced.

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Children with disorders of sex development: A qualitative study of early parental experience

International Journal of Pediatric Endocrinology ◽

10.1186/1687-9856-2011-10 ◽

2011 ◽

Vol 2011 (1) ◽

pp. 10 ◽

Cited By ~ 58

Author(s):

Halley P Crissman ◽

Lauren Warner ◽

Melissa Gardner ◽

Meagan Carr ◽

Aileen Schast ◽

...

Keyword(s):

Qualitative Study ◽

Disorders Of Sex Development ◽

Parental Experience ◽

Sex Development

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Psychological Changes and Adaptation: Primary Amenorrhea Associated with Disorders of Sex Development

Global Journal of Health Science ◽

10.5539/gjhs.v13n11p1 ◽

2021 ◽

Vol 13 (11) ◽

pp. 1

Author(s):

Kazuyo Iwami ◽

Tomoko Sumiyoshi ◽

Shinobu Ida

Keyword(s):

Qualitative Study ◽

Gender Identity ◽

Disorders Of Sex Development ◽

Female Gender ◽

Primary Amenorrhea ◽

Theory Approach ◽

Psychological Changes ◽

Sex Development ◽

Support Resources ◽

Grounded Theory Approach

This qualitative study investigated the psychological changes and process of adaptation among women after a diagnosis of primary amenorrhea associated with disorders of sex development (DSD). Data were obtained of 20 patients aged ≥ 25 years via interviews and analyzed using the modified grounded theory approach. Six categories were created: increasing doubt about gender identity, questioning and exploratory behaviors, feelings of loneliness and confusion, searching for self with the help of support resources, control for coexistence in society, living at peace with one’s body, and liberation from a sense of alien existence. Participants experienced fluctuations in parameters of gender identity, loneliness, and confusion. Encountering good experiences during exploration of helpful resources made them more confident of their female gender identity, thus helping them adapt. For women with primary amenorrhea associated with DSD, the process of becoming liberated from an obsession with their condition after receiving a diagnosis was characterized by the phrase “regaining confidence in being a woman.”

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