Experiences that women with primary amenorrhea associated with disorders of sex development received from medical workers with during their visits to medical institution

Abstract

This study aimed to examine the experiences that women with primary amenorrhea associated with sexually dimorphic diseases had with medical personnel during their visits to medical institutions. Semi-structured interviews were conducted with 20 women aged 25 years or older who had been notified about their disease. The qualitative inductive analysis demonstrated the following four categories of negative experiences: "increased distrust regarding the difficulties of diagnosis and treatment," "disappointment with the lack of ethical considerations in medical treatment," "anger and shock at inadequate and insensitive explanations," and "discomfort at being treated as a rarity, and prejudice.” There were four categories of supportive experiences: "promotion of understanding through explanations that helped alleviate shock," "a sense of trust resulting from a sincere attitude," "a sense of satisfaction resulting from kind and sympathetic treatment," and "a sense of security and safety arising from respect for individual values.”This study aimed to examine the experiences that women with primary amenorrhea associated with sexually dimorphic diseases had with medical personnel during their visits to medical institutions. Semi-structured interviews were conducted with 20 women aged 25 years or older who had been notified about their disease. The qualitative inductive analysis demonstrated the following four categories of negative experiences: "increased distrust regarding the difficulties of diagnosis and treatment," "disappointment with the lack of ethical considerations in medical treatment," "anger and shock at inadequate and insensitive explanations," and "discomfort at being treated as a rarity, and prejudice.” There were four categories of supportive experiences: "promotion of understanding through explanations that helped alleviate shock," "a sense of trust resulting from a sincere attitude," "a sense of satisfaction resulting from kind and sympathetic treatment," and "a sense of security and safety arising from respect for individual values.” The results suggest that it is imperative for nurses to play a role in promoting understanding and adaptation to the disease by providing information and consultation, protecting the privacy of the individual, and listening carefully to the patient in an atmosphere that fosters a sense of safety and security.