Parental narratives about genetic testing for hearing loss: a one year follow up study.

Few studies examine whether and how parental attitudes towards genetic testing change over time. In this study we interviewed parents of 14 children with newly identified hearing loss at two time points: after referral to genetics and 1 year later. Qualitative analyses of parental narratives indicate that parental attitudes did not change significantly over this time.

Assessing parental attitudes toward genetic testing for childhood hearing loss: before and after genetic consultation.

We report on the development of a Genetic Attitude Assessment Tool (GAAT) to measure parental attitudes in contemplating genetic testing for childhood hearing loss, and to examine the differences in assessments made before and after genetic counseling. The GAAT tool was administered to a convenient sample of 119 parents of children with bilateral sensorineural hearing loss. The respondents completed the survey either before (n = 77) or after (n = 42) genetic counseling.

Parental narratives on genetic testing for children with hearing loss: a qualitative inquiry.

Studies on parental attitudes towards genetic testing for hearing loss have surveyed parents of newborns with hearing loss as well as deaf and hearing adults. Although research indicates that most people have positive attitudes about genetic testing, few studies examine parental narratives about the personal implications of genetic hearing loss in their children. In this qualitative study we conducted semi-structured interviews with 24 parents whose children had been referred for, but had not yet undergone, genetic testing for hearing loss.

Health care system accessibility. Experiences and perceptions of deaf people.

Background: People who are deaf use health care services differently than the general population; little research has been carried out to understand the reasons.

Objective: To better understand the health care experiences of deaf people who communicate in American Sign Language.

Design: Qualitative analyses of focus group discussions in 3 U.

Socialization experiences and coping strategies of adults raised using spoken language.

This investigation concerned the socialization experiences and coping strategies of a group of 28 deaf adults who were raised using spoken language. Most respondents reported some level of social isolation because of (1) limitations in communication with hearing peers; (2) missing information in social, academic, and work settings; and (3) a sense of being "different." Most participants also reported strategies used to reduce isolation and mitigate the social difficulties associated with their hearing loss.

Parental decision-making in considering cochlear implant technology for a deaf child.

Objectives: Advances in cochlear implant (CI) technology have increased the complexity of treating childhood deafness. We compare parental decision-making, values, beliefs, and preferences between parents of eligible and ineligible children in considering cochlear implants.

Methods: Surveys were obtained from 83 hearing parents of deaf children.

Parental decision making and the choice of communication modality for the child who is deaf.

Background: Early intervention decisions for a deaf or hard of hearing child are difficult to make, partly because of the lack of definitive proof of the superiority of any particular communication approach.

Objective: To compare the relative importance of the child's hearing loss and parental attitudes, beliefs, values, and aspirations in the decision process.

Methods: Eighty-three parents were surveyed about decision factors that may have affected their choice of communication modality, including resource availability, attitudes and beliefs about hearing loss, values, trade-offs, and goals.

Deaf women: experiences and perceptions of healthcare system access.

Background: The authors investigated the knowledge, attitudes, and healthcare experiences of Deaf women.

Methods: Interviews with 45 deaf women who participated in focus groups in American Sign Language were translated, transcribed, and analyzed. Deaf women's understanding of women's health issues, knowledge of health vocabulary in both English and American Sign Language, common health concerns among Deaf women, and issues of access to information, including pathways and barriers, were examined.

Accommodating medical school faculty with disabilities.

More than ten years have passed since the Americans with Disabilities Act (ADA) mandated that all employers provide "reasonable accommodations" for employees with disabilities. This mandate applies to medical schools, but no systematic information is available to assess the accommodations provided to medical school faculty with disabilities. This Issue Brief summarizes anecdotal evidence from several medical schools about the experiences of faculty with disabilities, and the barriers they face in establishing and maintaining their careers.

Reasonable accommodations for medical faculty with disabilities.

An unknown number of medical school faculty have disabilities, and their experiences have generally escaped notice and scrutiny. Although most medical schools offer long-term insurance and extended leaves of absence for disability, relatively few have policies explicitly addressing accommodations for faculty with disabilities as they perform teaching, research, and clinical duties. We discuss accommodating active medical school faculty with disabilities, drawing on University of Pennsylvania School of Medicine initiatives exploring the concerns of faculty with sensory and physical disabilities.