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1.
Am J Intellect Dev Disabil ; 129(2): 135-150, 2024 Mar 01.
Artículo en Inglés | MEDLINE | ID: mdl-38411243

RESUMEN

Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018. Quantitative analysis was conducted for closed-ended responses, and qualitative analysis was conducted for open-ended responses. The analytic sample included 132 family caregivers. Most participants were parents and reported being closely involved in their family member's access to sexual and reproductive health services and information. Although most participants expressed that sexual and reproductive health services and information are essential for women with IDD, qualitative analysis of participants' open-ended responses revealed both supportive and restrictive attitudes and perspectives on sexual and reproductive health services and information for women with IDD. Supportive attitudes and perspectives included (1) "knowledge is power;" (2) supported decision-making; and (3) protection against sexual abuse. Restrictive attitudes and perspectives included (1) dependent on the individual; (2) lack of autonomy; and (3) placing responsibility on disability. Greater attention from policymakers and practitioners to systems-level changes, including universal and accessible sexual education for women with IDD, supported decision-making, and sexual abuse prevention measures, are urgently needed.


Asunto(s)
Cuidadores , Discapacidad Intelectual , Humanos , Femenino , Niño , Salud Reproductiva , Discapacidades del Desarrollo , Estudios Transversales
2.
BJOG ; 130(5): 514-521, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36156842

RESUMEN

OBJECTIVE: Women who are deaf experience higher rates of reproductive healthcare barriers and adverse birth outcomes compared with their peers who can hear. This study explores the pregnancy experiences of women who are deaf to better understand their barriers to and facilitators of optimal pregnancy-related health care. DESIGN: Qualitative study using thematic analysis. SETTING: Semi-structured, individual, remote or in-person interviews conducted in the USA. SAMPLE: Forty-five women who are deaf and communicate using American Sign Language (ASL) and gave birth in the USA within the past 5 years participated in the interviews. METHODS: Semi-structured interviews explored how mothers who are deaf experienced pregnancy and birth, including access to perinatal information and resources, relationships with healthcare providers, communication access and their involvement with the healthcare system throughout pregnancy. A thematic analysis was conducted. MAIN OUTCOME MEASURES: Barriers and facilitators related to a positive experience of perinatal care access among women who are deaf. RESULTS: Three major themes emerged: (1) communication accessibility; (2) communication satisfaction; and (3) healthcare provider and team support. Common barriers included choosing healthcare providers, inconsistent communication access and difficulty accessing health information. However, when women who are deaf were able to use ASL interpreters, they had more positive pregnancy and birth experiences. Self-advocacy served as a common facilitator for more positive pregnancy and healthcare experiences. CONCLUSIONS: Healthcare providers need to be more aware of the communication and support needs of their patients who are deaf, especially how to communicate effectively. Increased cultural awareness and consistent provision of on-site interpreters can improve pregnancy and birth experiences for women who are deaf.


Asunto(s)
Accesibilidad a los Servicios de Salud , Madres , Embarazo , Femenino , Humanos , Investigación Cualitativa , Comunicación , Lengua de Signos
3.
J Disabil Policy Stud ; 33: 15-24, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-36407838

RESUMEN

Parents with disabilities experience discrimination within the child welfare, family law, and adoption and foster care systems. In response, there have been increasing calls for states to pass legislation prohibiting discrimination against parents with disabilities, and as of 2020, 28 states have passed or are considering such legislation. This qualitative study explored the perspectives of 19 advocates, attorneys, and legislators on barriers and solutions for passing legislation to protect the rights of parents with disabilities. Participants identified three barriers: (a) legislators' pejorative attitudes toward parents with disabilities, (b) external opposition, and (c) legislative barriers. Participants also identified eight solutions: (a) cross-disability advocacy, (b) education, (c) relationship-building, (d) bipartisanship, (e) support from state and national organizations, (f) strong sponsors, (g) incrementalism, and (h) model legislation. Study findings should help to inform ongoing legislative advocacy to protect the rights of parents with disabilities.

4.
J Public Child Welf ; 15(5): 529, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-37220548

RESUMEN

While it is well-established that parents with disabilities and their families are over-represented in the child welfare system, no known research has described the parents,' child welfare professionals,' and attorneys' perspectives on the system's capacity to support them or their recommendations for improvement. This qualitative phenomenological study involved semi-structured interviews with 15 disabled parents, 15 child welfare professionals, and 15 parent attorneys. Respondents agreed that the child welfare system lacks expertise on disability and adequate services for disabled parents, and holds negative attitudes about them. Respondents recommended robust training for professionals on parents with disabilities, and individually-tailored services for disabled parents.

5.
Issues Ment Health Nurs ; 39(9): 757-763, 2018 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-29847200

RESUMEN

Inpatient psychiatric facilities in the United States lack systematic regulation and monitoring of a variety of patient safety concerns. We conducted a qualitative analysis of 61 news articles to identify common causes and types of harms within inpatient psychiatric facilities, with a focus on physical harm. The news articles reported on patient self-harm, patient-patient violence, and violence between patients and staff, noting that youth, older adults, and veterans were especially vulnerable. Harms occurred throughout the care continuum - at admission, during the inpatient stay, and at discharge - and retaliation towards whistleblowers deterred facility accountability. We recommend 1) addressing staffing shortages, 2) instituting systematic monitoring of critical incidents and the experiences of consumers and staff, 3) improving both inpatient safety and post-discharge community supports, and 4) continued journalistic coverage of harms within inpatient psychiatric facilities.


Asunto(s)
Hospitales Psiquiátricos/estadística & datos numéricos , Medios de Comunicación de Masas/estadística & datos numéricos , Trastornos Mentales/psicología , Servicio de Psiquiatría en Hospital/estadística & datos numéricos , Conducta Autodestructiva/epidemiología , Violencia/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Humanos , Trastornos Mentales/terapia , Estados Unidos
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