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1.
Res Pract Thromb Haemost ; 7(8): 102241, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-38193061

RESUMEN

Background: Persons with hemophilia may encounter various traumatic experiences related to their bleeding disorder throughout their lifetime. Little is known about the clinical impact of disease-related trauma on this population. Objectives: To explore the prevalence of posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms in adults with hemophilia A and B and characterize the traumatic experiences they report. Methods: An online survey tool collecting data on participant characteristics and a validated questionnaire containing the PTSD checklist for Diagnostic and Statistical Manual of Mental Disorders 5 were distributed via Research Electronic Data Capture to adults with hemophilia A and B during their annual visit to their hemophilia treatment center. Participants were asked about traumatic experiences specific to their hemophilia prior to self-administering the PTSD checklist for Diagnostic and Statistical Manual of Mental Disorders 5 questionnaire. Results: Survey responses from 178 individuals across 3 hemophilia treatment centers were included in the analysis, representing a 70% response rate. One hundred one (56.7%) participants identified a hemophilia-related traumatic event, and 21 (11.8%) participants met criteria for a provisional diagnosis of PTSD. Multivariable analysis showed higher odds of a positive PTSD screen in participants with noninfectious (odds ratio [OR], 13.89; 95% CI, 2.23-86.62) and infectious comorbidities (OR, 11.18; 95% CI, 1.34-93.45) and in participants with >1 mental health comorbidity (OR, 10.07; 95% CI, 2.39-42.52). On the contrary, age >46 years (OR, 0.6; 95% CI, 0.01-0.62) and higher education (OR, 0.25; 95% CI, 0.07-0.88) reduced odds of PTSD. Conclusion: Persons with hemophilia are at risk of developing PTSD and posttraumatic stress symptoms. These data support the need for trauma screening, psychosocial services in the bleeding disorders community, and provision of trauma-informed care by providers.

2.
Haemophilia ; 28(6): e164-e171, 2022 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-35797008

RESUMEN

INTRODUCTION: The social worker (SW) role in the Hemophilia Treatment Center (HTC) is complex and broad, providing direct support, spanning across micro, mezzo and macro levels of care. AIM: Research demonstrates discrepancy between actual and ideal SW roles among the HTC SW community. Soliciting perceptions from HTC staff about the SW role can provide a deeper understanding of this discrepancy and improve collaboration amongst care team members in meeting the psychosocial needs of HTC patients. METHODS: Funded by the National Hemophilia Foundation (NHF), a national online survey was conducted in 2020 to determine the views and attitudes of what the SW role is by HTC staff. Separate surveys were emailed to active HTC SWs and staff to collect anonymous data. Demographics of SWs gathered included age, education, years of practice, full time equivalent (FTE) status, and caseload. All disciplines were asked questions about perceptions, barriers, and potential ways to enhance and strengthen the SW role within HTCs. RESULTS: Results demonstrated that subcategory-oriented questions (40 in total) and qualitative responses highlighted diverse viewpoints and offered clarity about these differences. CONCLUSION: Findings indicated most HTC staff value the multi-faceted role of SW at their centres, and both groups identified time, limited resources, and role confusion as barriers to utilizing SW services. Outcomes will inform the development of a "standards of practice" tool that will provide education for HTC staff, patients, and families, and serve as an empowerment tool for SW to highlight their skillset and define their role.


Asunto(s)
Hemofilia A , Humanos , Estados Unidos , Hemofilia A/terapia , Trabajadores Sociales , Servicio Social , Encuestas y Cuestionarios
3.
J Child Sex Abus ; 22(3): 341-57, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23590354

RESUMEN

This study explored whether the attractiveness of a teacher affected perceptions of teacher sexual misconduct. Respondents (120 female and 108 male undergraduates) read scenarios depicting teacher sexual misconduct varied by gender dyad (male teacher-female student and female teacher-male student) and two levels of attractiveness (very attractive or ordinary looking). The attractiveness of the teacher had little impact on respondents' perceptions. Significant interactions emerged on most variables between respondent gender and gender dyad. Specifically, male respondents tended to view the female teacher-male student dyad as less negative than the male teacher-female student dyad. Female respondents generally did not make a distinction based on the gender dyad.


Asunto(s)
Docentes , Delitos Sexuales/psicología , Percepción Social , Estudiantes/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Proyectos Piloto , Pruebas Psicológicas , Factores Sexuales , Adulto Joven
4.
Autism Res ; 6(1): 42-50, 2013 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-23169761

RESUMEN

Alterations in the X-linked gene MECP2 encoding the methyl-CpG-binding protein 2 have been linked to autism spectrum disorders (ASDs). Most recently, data suggest that overexpression of MECP2 may be related to ASD. To better characterize the relevance of MECP2 overexpression to ASD-related behaviors, we compared the core symptoms of ASD in MECP2 duplication syndrome to nonverbal mental age-matched boys with idiopathic ASD. Within the MECP2 duplication group, we further delineated aspects of the behavioral phenotype and also examined how duplication size and gene content corresponded to clinical severity. We compared ten males with MECP2 duplication syndrome (ages 3-10) with a chronological and mental age-matched sample of nine nonverbal males with idiopathic ASD. Our results indicate that boys with MECP2 duplication syndrome share the core behavioral features of ASD (e.g. social affect, restricted/repetitive behaviors). Direct comparisons of ASD profiles revealed that a majority of boys with MECP2 duplication syndrome are similar to idiopathic ASD; they have impairments in social affect (albeit to a lesser degree than idiopathic ASD) and similar severity in restricted/repetitive behaviors. Nonverbal mental age did not correlate with severity of social impairment or repetitive behaviors. Within the MECP2 duplication group, breakpoint size does not predict differences in clinical severity. In addition to social withdrawal and stereotyped behaviors, we also found that hyposensitivity to pain/temperature are part of the behavioral phenotype of MECP2 duplication syndrome. Our results illustrate that overexpression/increased dosage of MECP2 is related to core features of ASD.


Asunto(s)
Trastorno Autístico/psicología , Conducta Infantil/psicología , Discapacidad Intelectual Ligada al Cromosoma X/genética , Discapacidad Intelectual Ligada al Cromosoma X/psicología , Proteína 2 de Unión a Metil-CpG/genética , Trastorno Autístico/genética , Niño , Preescolar , Duplicación de Gen/genética , Predisposición Genética a la Enfermedad/genética , Humanos , Masculino , Fenotipo
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