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1.
J Pediatr Psychol ; 49(7): 512-523, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38867313

RESUMO

OBJECTIVE: Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment. METHODS: This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews. RESULTS: Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment. CONCLUSIONS: Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.


Assuntos
Imagem Corporal , Transtornos do Desenvolvimento Sexual , Qualidade de Vida , Humanos , Feminino , Masculino , Imagem Corporal/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto Jovem , Estudos Transversais , Transtornos do Desenvolvimento Sexual/psicologia , Adulto , Resiliência Psicológica , Funcionamento Psicossocial
2.
Pediatrics ; 153(6)2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38699802

RESUMO

OBJECTIVES: To identify the most important attributes related to the process of achieving, and outcomes associated with, successful care for differences of sex development (DSD). METHODS: We developed a best-worst scaling survey administered to 520 DSD stakeholders, including individuals or family members of those with DSD, health care specialists, and patient support and advocacy representatives. Fourteen process-related attributes and 16 outcome-related attributes were identified through qualitative research. We estimated relative importance scores and coefficients from regression analysis to understand the relative importance of attributes and conducted latent class analysis to explore heterogeneity in preferences. RESULTS: The 3 most important process attributes were (1) good communication between care team and patient/family, (2) care team educated patient/family about condition, and (3) care team incorporates the values of patient/family. The 3 most important outcome attributes were (1) patient satisfaction, (2) patient mental health, and (3) treatment maintains physical health. Latent class analyses showed that respondents had heterogeneous preferences. For process-related attributes, we identified 3 respondent groups: "Patient autonomy and support" (46% of respondents), "Education and care transitions" (18%), and "Shared decision-making" (36%). For outcome-related attributes, we identified 2 respondent groups: "Preserving function and appearance" (59% of respondents) and "Patient health and satisfaction" (41%). CONCLUSIONS: Outcomes such as patient satisfaction and health were the most important outcome attributes, and good communication and education from the care team were the most important process attributes. Respondents expressed heterogeneous preferences for selected DSD care attributes that providers should consider to improve satisfaction with and quality of DSD care.


Assuntos
Transtornos do Desenvolvimento Sexual , Preferência do Paciente , Humanos , Transtornos do Desenvolvimento Sexual/terapia , Transtornos do Desenvolvimento Sexual/psicologia , Feminino , Masculino , Criança , Adolescente , Satisfação do Paciente , Adulto , Equipe de Assistência ao Paciente , Pré-Escolar
3.
Arch Sex Behav ; 53(5): 1667-1679, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38744731

RESUMO

False claims of having an intersex condition have been observed in print, video, Internet media, and in live presentations. Claims of being intersexed in publicly accessible media were examined and evidence that they were false was considered sufficiently conclusive in 37 cases. Falsity was most often detected due to medical implausibility and/or inconsistency, but sometimes also using information from third-party or published sources. The majority, 26/37, of cases were natal males; 11/37 were natal females. Almost all (34/37) were transgendered, living, or aspiring to live, in their non-natal sex or as socially intergender. The most commonly claimed diagnosis was ovotesticular disorder ("true hermaphroditism") due to chimerism, an actually uncommon cause of authentic intersexuality. Motivations for pretending to be intersexed were inferred from statements and behaviors and were varied. Some such pretenders appear to be avoiding the external or internalized stigma of an actual transgendered condition. Some appear, similarly to persons with factitious disorder, to be seeking attention and/or the role of a sick, disadvantaged, or victimized person. Some showed evidence of paraphilia, most frequently autogynephilia, and, in several cases, paraphilic diaperism. For some cases, such claims had been accepted as authentic by journalists or social scientists and repeated as true in published material.


Assuntos
Transtornos do Desenvolvimento Sexual , Humanos , Feminino , Masculino , Transtornos do Desenvolvimento Sexual/psicologia , Pessoas Transgênero/psicologia
4.
J Pediatr Psychol ; 49(7): 482-490, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38578612

RESUMO

OBJECTIVE: Illness intrusiveness refers to the subjective cognitive appraisal of a chronic health condition interfering in daily, valued activities and may be highly relevant for parents of children with atypical genital appearance due to differences of sex development (DSD). However, a measure of illness intrusiveness has not been validated for this population. The current study aimed to evaluate the factor structure of the Illness Intrusiveness Scale for Parents (IIS-P) and examine convergent validity. METHODS: Participants included 102 parents (Mage = 33.39 years, SD = 6.48; 58% mothers) of 65 children (<2 years old) diagnosed with DSD participating in a larger, longitudinal study. Parents completed the IIS-P as well as self-report measures of stigma, and anxious and depressive symptoms. An exploratory factor analysis (EFA) was conducted. RESULTS: EFA results supported a 1-factor intrusiveness solution (α = .93), as well as a 2-factor solution measuring intrusiveness on daily living (α = .92) and community connectedness (α = .85). The 1-factor solution and both factors of the 2-factor solution demonstrated significant convergent validity with stigma as well as anxious and depressive symptoms. CONCLUSIONS: Support emerged for both 1- and 2-factor solutions of the IIS-P in parents of children with DSD. The decision to evaluate illness intrusiveness as a total score or to examine the subscales of daily living and community connectedness should be tailored to the unique aims of researchers and clinicians. Future research should conduct a confirmatory factor analysis with both 1- and 2-factor models with larger, more diverse samples of caregivers.


Assuntos
Transtornos do Desenvolvimento Sexual , Pais , Humanos , Masculino , Feminino , Pais/psicologia , Adulto , Análise Fatorial , Transtornos do Desenvolvimento Sexual/psicologia , Estudos Longitudinais , Estigma Social , Depressão/psicologia , Psicometria , Ansiedade/psicologia , Pré-Escolar , Lactente , Reprodutibilidade dos Testes
5.
Patient Educ Couns ; 125: 108294, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38669761

RESUMO

OBJECTIVES: We examined: (1) healthcare communication satisfaction and psychosocial outcomes (resilience, QoL, and psychological adjustment) in adolescents and young adults (AYA) with differences of sex development (DSD), (2) differences in psychosocial outcomes between those who were highly satisfied and those who were less satisfied, and (3) group differences between adolescents (ages 12-17) and young adults (ages 18-26) regarding associations with healthcare communication and psychosocial outcomes. METHODS: AYA with DSD across four study sites reported on satisfaction with healthcare communication and psychosocial outcomes. Analyses included descriptive statistics (aim 1), independent samples t-tests (aim 2), and Pearson's correlations (aim 3). RESULTS: Participants reported high levels of satisfaction with healthcare communication. Higher healthcare communication satisfaction was associated with greater resilience (p = .01), better QoL (p = .02), and fewer internalizing problems (p = .04). For adolescents, higher healthcare communication satisfaction was associated with better psychosocial outcomes (p values ranging from.01-.04). No significant associations were found in the young adult group. CONCLUSIONS: Satisfaction with healthcare communication is related to positive psychosocial outcomes in adolescents with DSD. PRACTICE IMPLICATIONS: These data underscore the importance of optimizing communication with families, engaging AYA in early and ongoing discussions about their care, and including psychosocial providers in DSD care.


Assuntos
Comunicação , Satisfação do Paciente , Qualidade de Vida , Humanos , Adolescente , Feminino , Masculino , Adulto Jovem , Adulto , Qualidade de Vida/psicologia , Transtornos do Desenvolvimento Sexual/psicologia , Criança , Adaptação Psicológica , Inquéritos e Questionários , Resiliência Psicológica
6.
Urologie ; 63(5): 448-455, 2024 May.
Artigo em Alemão | MEDLINE | ID: mdl-38573501

RESUMO

BACKGROUND: Human beings with a difference in sexual development (DSD) often underwent gender reassignment surgery during early childhood. However, the medical decision was often not congruent with the gender identity that affected persons developed later on. OBJECTIVES: To represent the interests of affected persons, an interdisciplinary guideline in cooperation with support groups was written. MATERIALS AND METHODS: The revision of the first version of the guideline, published in 2016, was edited by 18 professional societies and working groups as well as 3 support groups. A literature search was performed for each of the 12 chapters. Recommendations and statements created by the working groups were voted on during four consensus conferences. RESULTS: The guideline highlights the right of self-determination of affected persons. In this context, new legal requirements are reported. Other than necessary primary diagnostics, medical procedures should be postponed. Most important is the psychological support of parents and patients. Tumor risk of the gonads and protection of fertility are analyzed and discussed in detail. CONCLUSION: The content of the guideline represents a paradigm shift in dealing with human beings with a difference of sexual development. Projects as DSD Care and Empower-DSD help to promote the practical implementation of the guideline's recommendations.


Assuntos
Guias de Prática Clínica como Assunto , Humanos , Masculino , Feminino , Transtornos do Desenvolvimento Sexual/psicologia , Transtornos do Desenvolvimento Sexual/terapia , Alemanha , Cirurgia de Readequação Sexual , Desenvolvimento Sexual , Urologia/normas
7.
J Psychosom Res ; 179: 111636, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38507969

RESUMO

OBJECTIVE: Congenital conditions with atypical development of chromosomal, gonadal, or anatomic sex characteristics are referred to as Differences of Sex Development (DSD). Psychosocial care is recommended to be an integral part of clinical management for individuals with DSD. Few studies have examined the perceived need for, utilization of and the opinions of individuals with DSD regarding psychological support. METHODS: This cross-sectional study was part of a European multicentre study in 14 different medical centres in six countries. In total, 1040 individuals with DSD participated in a patient-reported outcome questionnaire asking about experiences and opinions regarding psychological support in DSD care. RESULTS: A majority of the participants reported that they had not received psychological support, in childhood and/or adolescence (70.6%, n = 692) nor in adulthood (67.9%, n = 661). Need for psychological support in childhood and/or adolescence was reported by 51.3% (n = 503), need for psychological support in adulthood, was reported by 49.5% (n = 482). The majority (80.2%; n = 718) agreed with the statement that people with DSD should always be offered psychological support. According to 78.7% (n = 697) of the participants, parents of children with DSD should always be offered psychological support. CONCLUSION: Our findings support the existing consensus that psychological support should be an integral part of DSD care. The discrepancy between received and perceived need for psychological support suggests that individuals with DSD experience barriers to access mental health care services. Psychosocial and psychological services for children, adolescents and adults should therefore be available and offered throughout the lifespan to individuals with DSD.


Assuntos
Transtornos do Desenvolvimento Sexual , Serviços de Saúde Mental , Adulto , Criança , Adolescente , Humanos , Estudos Transversais , Transtornos do Desenvolvimento Sexual/terapia , Transtornos do Desenvolvimento Sexual/psicologia , Desenvolvimento Sexual , Aconselhamento
8.
Arch Sex Behav ; 53(5): 1681-1694, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38383942

RESUMO

The traditional gender binary constitutes an integral aspect of Islamic social ethics, which has a pivotal role in shaping religious obligations, legal proceedings, and interpersonal judgments within Muslim communities. Within the familial sphere, this gender binary underscores fundamental responsibilities encompassing parenthood, filial duties, and inheritance rights. Recent years have witnessed a growing challenge to the traditional concept of the gender binary within Islamic societies. This shift is driven by increasing social libertarianism that emphasizes gender fluidity and individual choice. Hence, this article aims to critically scrutinize evolving discussions and controversies about the rights of intersex and transgender individuals, particularly issues relating to sex reassignment or gender-affirming surgery, marriage, and reproduction, from the perspective of the Sunni tradition of Islam. To support the various interpretations and insights presented here, a comprehensive and rigorous analysis is carried out on various religious texts and scholarly sources to elucidate the theological and jurisprudential positions on gender issues. It is thus concluded that Shariah offers greater flexibility in the treatment of intersex individuals compared to those with gender dysphoria because the intersex condition is viewed as a physical impairment that is not the choice of the afflicted individual. By contrast, in the case of individuals with gender dysphoria, they are willfully attempting to change their recognized biological sex, that God had naturally given to them at birth. Therefore, it is recommended that such transgender individuals deserve respectful psychological and social rehabilitation with help and guidance from religious authorities, their families, and communities.


Assuntos
Islamismo , Casamento , Direitos Sexuais e Reprodutivos , Cirurgia de Readequação Sexual , Pessoas Transgênero , Humanos , Cirurgia de Readequação Sexual/legislação & jurisprudência , Pessoas Transgênero/psicologia , Casamento/legislação & jurisprudência , Casamento/psicologia , Masculino , Direitos Sexuais e Reprodutivos/legislação & jurisprudência , Feminino , Transtornos do Desenvolvimento Sexual/psicologia , Transtornos do Desenvolvimento Sexual/cirurgia
9.
Soc Sci Med ; 329: 116047, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37390680

RESUMO

Intersex people have variations in their sex characteristics that do not exclusively fall within binary definitions of male and female. This community experiences discrimination in the medical setting due to the pathologization of intersex bodies, including 'normalizing' genital surgeries without the child's consent. While research has explored biomedical aspects contributing to intersex variations, there is limited research centering intersex people's perspectives on their healthcare experiences. The aim of this qualitative study was to understand the experiences of intersex people in the medical setting, with the goal of providing recommendations to clinicians to promote affirming healthcare practices. Between November 2021 and March 2022 we conducted 15 virtual semi-structured interviews with members of the intersex community about their experiences with healthcare providers and perspectives on how their care could be improved. Participants were recruited through social media, with the majority residing in the United States. Through reflexive thematic analysis, 4 major themes were conceptualized: (1) the exclusion of intersex people in binary frameworks, (2) the common experience of medical trauma, (3) the value of psychosocial support, and (4) systemic change to address intersex healthcare. Recommendations were generated based on participants' narratives, including a recommendation for providers to use a trauma-informed approach to care. Healthcare providers must prioritize patient autonomy and ensure consent throughout their medical visits in order to promote intersex affirming care. Depathologization of intersex variations and comprehensive teachings of intersex history and medical care must be incorporated into medical curricula to mitigate experiences of medical trauma and to relieve the burden placed on patients to be their own medical experts and advocates. Participants shared the value of being connected to support groups and mental health resources. Systemic change is needed for the normalization and demedicalization of intersex variations and for the medical empowerment of the intersex community.


Assuntos
Atenção à Saúde , Transtornos do Desenvolvimento Sexual , Criança , Humanos , Masculino , Feminino , Estados Unidos , Transtornos do Desenvolvimento Sexual/psicologia , Pesquisa Qualitativa , Narração , Instalações de Saúde
10.
Curr Opin Psychol ; 49: 101539, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36610363

RESUMO

Psychological research on people with variable sex characteristics (VSC)/intersex is broadening from the traditional exploitation of this population to ask nature/nurture questions about sexuality and gender. Healthcare for this population has been highly controversial, prompting research on psychological outcomes, the life-span development of adults with VSC, and distress trajectories of parents of children with VSC. Psychological research on clinical psychologists' roles in multidisciplinary care teams, and on decision making about medical pathways informed by those teams, both inform the evaluation of contemporary healthcare. Research is broadening to consider schoolchildren with VSC, elite athletes with VSC, and public understanding of VSC. The growing interdisciplinary field of intersex studies provides critical resources for psychologists.


Assuntos
Transtornos do Desenvolvimento Sexual , Caracteres Sexuais , Adulto , Criança , Humanos , Identidade de Gênero , Pais/psicologia , Transtornos do Desenvolvimento Sexual/psicologia , Longevidade
11.
Horm Res Paediatr ; 96(2): 207-221, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36473446

RESUMO

BACKGROUND: Disorders/differences of sex development (DSD) comprise a heterogeneous group of inborn conditions where the individual's sex chromosomes, gonads, and/or anatomical sex are discordant. Since the Chicago Consensus Conference in 2005, multidisciplinary care has been implemented in specialised paediatric tertiary care centres and clinical practice has substantially changed towards a more holistic approach. SUMMARY: Psychological support has become a key factor in the management of DSD. After paediatric care, one of the main challenges is the transition of patients to expert care in adulthood. Patients frequently experience difficulties in accessing specialised medical care in adulthood, resulting in loss to follow-up affecting the patients' physical and psychological health as well as quality of life. Clinical features and long-term outcomes are highly variable in most DSD conditions. Although medical care has improved, morbidity and mortality are increased in all conditions. A particular challenge in the care of DSD patients in adulthood is optimisation of fertility potential. Ideally, this is addressed already in adolescence and requires close interaction of not only paediatricians and adult endocrinologists but also urologists, andrologists or gynaecologists, and psychologists. KEY MESSAGES: This review addresses issues relating to transition of DSD care from the paediatric to adult care as well as health-related challenges in adulthood in DSD.


Assuntos
Transtornos do Desenvolvimento Sexual , Transição para Assistência do Adulto , Adolescente , Humanos , Adulto , Criança , Transtornos do Desenvolvimento Sexual/terapia , Transtornos do Desenvolvimento Sexual/psicologia , Qualidade de Vida/psicologia , Fertilidade , Saúde Mental
12.
Horm Res Paediatr ; 96(2): 228-237, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35691284

RESUMO

Informed decision-making and considerations of the child's best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the well-being of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what "doing something and doing nothing" really means when learning about nonsurgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care for children and youth with DSD and their parents. Without actionable tools or approaches, parents cannot make informed decisions about their child's health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness and gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end, an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author's experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team-based psychological care, and psychosocial approaches across the lifespan.


Assuntos
Transtornos do Desenvolvimento Sexual , Pais , Criança , Adolescente , Humanos , Pais/psicologia , Transtornos do Desenvolvimento Sexual/cirurgia , Transtornos do Desenvolvimento Sexual/psicologia , Desenvolvimento Sexual
13.
Cult Health Sex ; 25(7): 833-846, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35921389

RESUMO

People with intersex variation/s have sex characteristics determined by reproductive anatomy or chromosomal, gonadal, or hormonal expressions that are not typical of medical and societal norms for male or female bodies and are widely subjected to irreversible medical interventions at an early age to reinforce sex assignment. These interventions may be accompanied by experiences of lack of autonomy for the individual and, at times, lack of fully informed consent on the part of the individual or their parents/carers. People with intersex variations additionally experience high rates of mental health concerns relating to stigma, discrimination and poor healthcare experiences. The intersections between LGBTQ identities and intersex variations are poorly understood but are important given a high proportion of people with intersex variations identify as LGBTQ. This study explored associations between healthcare experiences and mental health outcomes among 46 LGBTQ people aged between 18 and 67 years old with intersex variations in Australia. Findings provide evidence of associations between suicidal thinking, suicidal attempts, depression or anxiety and negative healthcare experiences, including limited autonomy and consent, and challenges accessing psychological support. These highlight the need for further research and proactive intervention to advance human rights and improve health outcomes for this population.


Assuntos
Transtornos do Desenvolvimento Sexual , Minorias Sexuais e de Gênero , Humanos , Masculino , Feminino , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Transtornos do Desenvolvimento Sexual/psicologia , Saúde Mental , Direitos Humanos , Avaliação de Resultados em Cuidados de Saúde
14.
Horm Res Paediatr ; 96(2): 222-227, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35390804

RESUMO

The paediatric clinical psychology literature provides applicable evidence for use in specialist healthcare settings and services. The general approach of psychological care of children and families with paediatric conditions is recognizable as preventative and destigmatizing, aimed to maximize personal agency with shared responsibility for achieving best outcomes via multi-professional teamwork. Recent commentaries regarding healthcare for children with differences in sex development (DSD) have noted service-level pitfalls, including poor teamwork and underuse of early and integrated psychological intervention. Psychological research regarding the variously termed DSD, variations in sex development, variation in sex characteristics, or intersex has historically centred around the assessment of sex differences, gender identity, and the impact of including hormone influences on brain and behaviour. Psychological research in this specialist area has not focussed on the evaluation of specific clinical interventions or psychotherapeutic models but has investigated psychological aspects of multi-professional healthcare provision. There are new goals for psychological care of children with variations or differences in sex development (V/DSD). These require a framework of good communication to enable those receiving care to come to know and articulate their own hopes for treatment and support. Paediatric psychological intervention studies involving larger clinical groups such as diabetes provide evidence applicable to DSD populations. A risk of stigma is recognized as inherent to some physical interventions within routine paediatric care of people with V/DSD. Psychological care and intervention should be aimed at minimizing these risks via questioning and examining their assumed need. Psychological approaches can provide a foundation for ethical and rights-based multi-professional care of children with V/DSD.


Assuntos
Transtornos do Desenvolvimento Sexual , Identidade de Gênero , Humanos , Criança , Masculino , Feminino , Comunicação , Caracteres Sexuais , Desenvolvimento Sexual , Transtornos do Desenvolvimento Sexual/terapia , Transtornos do Desenvolvimento Sexual/psicologia
15.
Fam Syst Health ; 41(2): 256-264, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36066861

RESUMO

INTRODUCTION: Social support can be a protective factor against the negative mental health outcomes experienced by some parents and caregivers of children with differences of sex development (DSD). However, established social support networks can be difficult to access due to caregiver hesitancy to share information with others about their child's diagnosis. Health care providers in the field of DSD, and particularly behavioral health providers, are well positioned to help caregivers share information with the important people in their lives in order to access needed social support. This article summarizes the development of a clinical tool to help clinicians facilitate discussions regarding information sharing with caregivers of children with DSD. METHOD: Members of the psychosocial workgroup for the DSD -Translational Research Network completed a survey about their experiences facilitating information sharing discussions with caregivers of children with DSD and other health populations. The results of this survey were used to develop a clinical tool using ongoing iterative feedback from workgroup members, based on principles of user-centered design and quality improvement. RESULTS: Workgroup members consider information sharing an important aspect of working with caregivers of children with DSD. Additional resources and tools were identified as potentially helpful to these discussions. DISCUSSION: The DSD Sharing Health Information Powerfully-Team Version (SHIP-T) is a resource tool for DSD health care team members to utilize in hospital and ambulatory settings to help caregivers of children with DSD share information with their social support networks. The final SHIP-T is included in this article. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Assuntos
Cuidadores , Transtornos do Desenvolvimento Sexual , Criança , Humanos , Cuidadores/psicologia , Transtornos do Desenvolvimento Sexual/diagnóstico , Transtornos do Desenvolvimento Sexual/psicologia , Pais/psicologia , Inquéritos e Questionários , Disseminação de Informação
16.
J Relig Health ; 62(2): 797-818, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36070127

RESUMO

Management of newborns with disorders of sex development (DSD), especially in deciding the need for a sex assignment surgery, is a complex matter. It is associated with many bioethical issues, such as concerns about the rights and welfare of the newborns and the reliability of parents' consent to the paternalistic disposition of physicians in making the best decisions. This paper, containing interviews with six medical experts and three religious' experts, aims to raise awareness of the multidisciplinary approach, which uses a combination of medicine, religion, and ethics in managing children with DSD, particularly in Malaysia, to avoid unnecessary psychological, biological, emotional, and societal ramifications.


Assuntos
Transtornos do Desenvolvimento Sexual , Humanos , Criança , Recém-Nascido , Malásia , Reprodutibilidade dos Testes , Transtornos do Desenvolvimento Sexual/psicologia , Transtornos do Desenvolvimento Sexual/cirurgia , Temas Bioéticos , Islamismo , Religião e Medicina
17.
Arch Sex Behav ; 52(1): 21-25, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36344791

RESUMO

A senior pediatric endocrinologist at a leading medical school in Canada has for years provided the introductory lecture on Disorders of Sex Development/Intersexuality (DSD/I) in the standard second-year course. In 2020/2021, two students complained to medical school administrators about six specific issues of intersex theory and care that were addressed in the lecture (Polychronakos, 2021). Subsequently, the administration replaced the professor with a different lecturer, thus effectively censoring the dissemination of intersex science. An overview of the status of the clinical literature on intersexuality shows that the students' critiques focus on concepts and facts that have been developed in extensive medical and sexological research over the past 50-60 years, as is shown for each of their points of critique. By censoring the professor's teaching, the medical school not only violated academic freedom, but also suppressed well-established scientific facts, kept medical students uninformed about the diverse points of view in this area of clinical management, and likely undermined future evidence-based medical and psychosocial care by these students for individuals with this type of medical condition.


Assuntos
Transtornos do Desenvolvimento Sexual , Faculdades de Medicina , Criança , Humanos , Transtornos do Desenvolvimento Sexual/psicologia , Desenvolvimento Sexual , Canadá
18.
Sociol Health Illn ; 45(1): 163-178, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36214753

RESUMO

Health inequalities impact sex-variant people in highly differentiated ways. This is evidenced in much academic and activist intersex research documenting the highly specific forms of inequalities arising from misrecognition, discrimination and human rights abuses inherent to pathologised accounts of non-normative bodies. Important theoretical work further interrogates the implications of sex variant subjectivities, identities and bodies for static or binary notions of both sex and gender. In this paper, we aim to contribute further to this scholarship. We draw upon feminist materialist and Deleuzean-informed understandings of materials or matter to rethink debates over sex-variant subjectivities, identities and bodies in relation to inequalities in health. We argue 'the turn to matter' and associated new materialist theories draw attention to the complex, dynamic relational assemblages and entanglements mutually constituting the affective, embodied and socio-material worlds of intersex people. Informed by these theories, we propose that inequalities can be more fully addressed through a new health equity research agenda that is co-produced with sex-variant people. This agenda will enable a fuller exploration of the unsettling but transformative capacities of intersex matters and meanings with the contextually specific understandings of equity in relation to health and health care.


Assuntos
Transtornos do Desenvolvimento Sexual , Equidade em Saúde , Masculino , Feminino , Humanos , Transtornos do Desenvolvimento Sexual/psicologia , Feminismo , Direitos Humanos , Identidade de Gênero
19.
Psychol Med ; 53(6): 2229-2240, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-34663488

RESUMO

BACKGROUND: Openness on one's health condition or (stigmatized) identity generally improves mental health. Intersex or differences of sex development (DSD) conditions have long been kept concealed and high levels of (internalizing) mental health problems are reported. This study examines the effects of condition openness on anxiety and depression and the role of mediating concepts in this population. METHODS: Cross-sectional data of individuals of 16 years and older with an intersex/DSD condition was collected in 14 specialized European clinics as part of the dsd-LIFE study. Patient-reported measures were taken on openness and shame (Coping with DSD), self-esteem (Rosenberg Self-Esteem Scale), satisfaction with care (CSQ4), anxiety and depression (HADS). Scores were compared per clinical group and data were analyzed via structural equation modeling (SEM) to calculate prediction and mediation models. RESULTS: Data of 903 individuals were included in this study (Turner syndrome (n = 284), 46, XY DSD (n = 233), CAH (n = 206) and Klinefelter syndrome (n = 180)). Participants were moderately open on their condition. High levels of both anxiety and depression were observed across the sample. In SEM analysis, the tested models predicted 25% of openness, 31% of anxiety and 48% of depression. More condition openness directly predicted lower anxiety and depression symptoms, as well as indirectly through increased self-esteem, self-satisfaction and satisfaction with social support. CONCLUSIONS: Condition openness is associated with lower anxiety and depression in individuals with an intersex/DSD condition. Healthcare may provide the necessary knowledge and skills to employ one's optimal level of self-disclosure in order to improve mental health.


Assuntos
Transtornos do Desenvolvimento Sexual , Saúde Mental , Humanos , Estudos Transversais , Análise de Classes Latentes , Transtornos do Desenvolvimento Sexual/epidemiologia , Transtornos do Desenvolvimento Sexual/psicologia , Desenvolvimento Sexual
20.
J Adolesc Health ; 71(6): 688-695, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36088232

RESUMO

PURPOSE: Adolescence is an important period for sexual development, including sexual debut. The purpose of this study was to assess first romantic and sexual experiences and debut age in individuals with differences of sex development (DSD/intersex) and compare these with age-matched and gender-matched population control values. METHODS: Questionnaire data on sociodemographic characteristics, romantic and sexual milestones (e.g., masturbation, dating), satisfaction with sexual life and sexual activity at follow-up, self-esteem, and feelings of femininity or masculinity were collected from 976 participants in Europe with a DSD condition. Participants were divided into six diagnostic subgroups based on their diagnostic classification: women with Turner syndrome, congenital adrenal hyperplasia, 46XY-DSD nonvirilized, and 46XY-DSD female partially virilized conditions and men with 46XY-DSD male or Klinefelter syndrome. Age-specific and gender-specific reference values were retrieved from a Dutch population sample. RESULTS: Individuals with DSD were less likely to reach each of the romantic and sexual milestones compared to their peers without these conditions and they were significantly older when reaching these milestones. Between clinical subgroups, individuals with Klinefelter were significantly older when reaching milestones and in the female groups and individuals with Turner were the least likely to reach milestones. Furthermore, a higher age when reaching several romantic and sexual milestones was correlated with lower self-esteem, lower satisfaction with sexual life, and lower sexual frequency at follow-up. DISCUSSION: Due to a difference in biopsychosocial context, individuals with DSD often experience a different and/or delayed sexual development during adolescence. Healthcare providers should be aware of these differences in adolescents with DSD and their sexual development to optimize affirmative counseling.


Assuntos
Transtornos do Desenvolvimento Sexual , Desenvolvimento Sexual , Feminino , Adolescente , Masculino , Humanos , Transtornos do Desenvolvimento Sexual/epidemiologia , Transtornos do Desenvolvimento Sexual/psicologia , Comportamento Sexual/psicologia , Autoimagem , Inquéritos e Questionários
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