Annie G. Steinberg

Health care system accessibility : Experiences and perceptions of deaf people

AbstractBACKGROUND: 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.S. cities. PARTICIPANTS: Ninety-one deaf adults who communicate primarily in American Sign Language. MEASUREMENTS: We collected information about health care communication and perceptions of clinicians’ attitudes. We elicited stories of both positive and negative encounters, as well as recommendations for improving health care. RESULTS: Communication difficulties were ubiquitous. Fear, mistrust, and frustration were prominent in participants’ descriptions of health care encounters. Positive experiences were characterized by the presence of medically experienced certified interpreters, health care practitioners with sign language skills, and practitioners who made an effort to improve communication. Many participants acknowledged limited knowledge of their legal rights and did not advocate for themselves. Some participants believed that health care practitioners should learn more about sociocultural aspects of deafness. CONCLUSIONS: Deaf people report difficulties using health care services. Physicians can facilitate change to improve this. Future research should explore the perspective of clinicians when working with deaf people, ways to improve communication, and the impact of programs that teach deaf people self-advocacy skills and about their legal rights.

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 womens understanding of womens 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. As a qualitative study, the results of this investigation are limited and should be viewed as exploratory. RESULTS A lack of health knowledge was evident, including little understanding of the meaning or value of cancer screening, mammography, or Pap smears; purposes of prescribed medications, such as hormone replacement therapy (HRT); or necessity for other medical or surgical interventions. Negative experiences and avoidance or nonuse of health services were reported, largely due to the lack of a common language with healthcare providers. Insensitive behaviors were also described. Positive experiences and increased access to health information were reported with practitioners who used qualified interpreters. Providers who demonstrated minimal signing skills, a willingness to use paper and pen, and sensitivity to improving communication were appreciated. CONCLUSIONS Deaf women have unique cultural and linguistic issues that affect healthcare experiences. Improved access to health information may be achieved with specialized resource materials, improved prevention and targeted intervention strategies, and self-advocacy skills development. Healthcare providers must be trained to become more effective communicators with Deaf patients and to use qualified interpreters to assure access to healthcare for Deaf women.

Translation Challenges and Strategies: The ASL Translation of a Computer-Based, Psychiatric Diagnostic Interview

This article describes the translation goals, challenges, strategies, and solutions employed in the development of a computer-based, self- administered, psychiatric diagnostic instrument, the Diagnostic Interview Schedule for the Deaf (D-DIS-IV) in American Sign Language (ASL) with English captions. The article analyzes the impact of the differences between ASL and English as well as the influence upon psychiatric content of the life experiences of respondents with normal hearing and deafness. The authors describe solutions for bridging these differences in the translation of a self-administered, computer-based, psychiatric diagnostic interview.

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. Exploratory Factor Analysis was applied to identify and quantify the underlying psychosocial structure. Our results showed the validated 54‐item GAAT instrument contains six subscales: (1) “test intention,” (2) “beliefs in non‐genetic causes of hearing loss,” (3) “deferral of decision to undergo genetic testing,” (4) “appropriate use of genetic testing results,” (5) “beliefs in the benefits,” and (6) “concerns about stigma.” The respondents who answered the survey after genetic counseling had higher “test intention” (P = 0.017) and endorsed to a greater extent “beliefs in the benefits” (P < 0.001). They believed to a lesser extent that childhood hearing loss was due to “non‐genetic causes” (P < 0.001) and were less inclined to prefer “decision deferral” (P = 0.031). Respondents who themselves had a hearing loss expressed a significantly weaker belief in “non‐genetic causes” of hearing loss (P < 0.0001). In conclusion the validated GAAT instrument is responsive to changes in parental attitudes after genetic counseling. The GAAT may be used to monitor parental attitudes serially, to further understand how parental attitudes change from pre genetic counseling, post genetic counseling, to post test result disclosure.