Abstract:Many nurses will be unaware of the condition of being intersex and have little knowledge of the challenges faced by this group yet are likely to be involved in their care. People with intersex conditions require particularly sensitive care and nurses can provide appropriate, supportive and 'safe' care if they are aware of the condition and its challenges.
“…Despite their fear of rejection, some participants have positive intimate relationships:“He never ever discussed about me being different, but he found my body intriguing.” (MacKenzie et al., , p. 1779).…”
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.
“…Despite their fear of rejection, some participants have positive intimate relationships:“He never ever discussed about me being different, but he found my body intriguing.” (MacKenzie et al., , p. 1779).…”
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.
“…Previous research regarding disclosure in DSD has focused on harm to affected individuals by being either uninformed or misinformed about their condition [1,6,15]. However, parents of affected individuals also appear to grapple with issues of information sharing.…”
Section: Discussionmentioning
confidence: 99%
“…Analysis of clinical management strategies has focused on gender assignment and the desirability and timing of genital surgery [1,6-8]. …”
BackgroundClinical research on psychological aspects of disorders of sex development (DSD) has focused on psychosexual differentiation with relatively little attention directed toward parents' experiences of early clinical management and their influence on patient and family psychosocial adaptation.ObjectivesTo characterize parental experiences in the early clinical care of children born with DSD.Study DesignContent analysis of interviews with parents (n = 41) of 28 children, newborn to 6 years, with DSD.ResultsFour major domains emerged as salient to parents: (1) the gender assignment process, (2) decisions regarding genital surgery, (3) disclosing information about their child's DSD, and (4) interacting with healthcare providers. Findings suggested discordance between scientific and parental understandings of the determinants of "sex" and "gender." Parents' expectations regarding the benefits of genital surgery appear largely met; however, parents still had concerns about their child's future physical, social and sexual development. Two areas experienced by many parents as particularly stressful were: (1) uncertainties regarding diagnosis and optimal management, and (2) conflicts between maintaining privacy versus disclosing the condition to access social support.ConclusionsParents' experiences and gaps in understanding can be used to inform the clinical care of patients with DSD and their families. Improving communication between parents and providers (and between parents and their support providers) throughout the early clinical management process may be important in decreasing stress and improving outcomes for families of children with DSD.
“…It is currently recommended that patients with DSD are seen by qualified and experienced interdisciplinary teams, including pediatricians, endocrinologists, gynecologists, surgeons, psychologists/psychiatrists, geneticists, neonatologists, social workers, and nurses (5,6). There has also been great emphasis on the establishment of ethical principles Brought to you by | University of Queensland -UQ Library Authenticated Download Date | 8/16/15 4:57 PM for the management of these situations (7).…”
Health professionals must be aware of the impact on parents of the birth of children with ambiguous genitalia. This study aimed to analyze the experiences and perceptions of such parents. Parents of 30 children who were evaluated in a reference center for disorders of sex development (DSD) were interviewed. The questionnaire covered the prenatal period, the moment they were told about the disorder, initial management by health professionals, and problems they experienced. Only two cases were detected during pregnancy. The news was usually given to the mother alone by pediatricians. Most parents kept it secret and avoided exposing the baby to the prejudice of others. Parents of children who were referred without sex assignment usually held a personal belief of their child's sex. Previous assignment was based on clinical examination and/or karyotype. Spreading knowledge about DSD could increase awareness of this issue, thus reducing parents' shock and societal stigma. Training of neonatal care teams is required to avoid assignment before evaluation.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
