Preferences for communication in clinic from deaf people: a cross‐sectional study

Middleton, Anna; Turner, Graham; Bitner‐Glindzicz, Maria; Lewis, Peter; Richards, Martin; Clarke, Angus; Stephens, Dafydd

doi:10.1111/j.1365-2753.2009.01207.x

Cited by 40 publications

(34 citation statements)

References 16 publications

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“…Although knowledge of genetics concepts was relatively high at baseline, there was improvement in knowledge scores after pre-test genetic counseling for participants who used ASL with an interpreter, those who used a combination of ASL and English with an interpreter, and those who used English without an interpreter. These findings suggest that pre-test genetic counseling is important for all deaf or hard-of-hearing individuals and they support provision of health services in a culturally and linguistically appropriate manner to increase deaf individuals’ genetics knowledge and comprehension (Middleton et al 2010b; Withrow et al 2008; Withrow et al 2009a). Additionally important, there was no evidence that improvement in genetics knowledge scores could be explained by idiosyncrasies of the study protocol (time between audiology and pre-test genetic counseling sessions) or personnel (genetic counselors, sign language interpreters), further supporting a conclusion that pre-test genetic counseling itself enhanced genetics knowledge outcomes of deaf or hard-of-hearing individuals.…”

Section: Discussionmentioning

confidence: 85%

“…It is difficult to determine the role the presence of an interpreter in general may have played in participants’ knowledge and understanding during the genetic counseling sessions. The literature supports providing genetic counseling services directly in the client’s primary language whenever possible (Betancourt et al 2003; Weil 2000), and signed language users prefer to consult directly with a signing health professional (Middleton et al 2010b). Thus, one hypothesis is that ASL-users’ genetics knowledge outcomes would be further enhanced if genetic counseling is provided directly in ASL.…”

Section: Discussionmentioning

confidence: 99%

“…In addition to previous recommendations (Arnos et al 1991a, b; Burton et al 2006; Middleton et al 2010b; Withrow et al 2008), genetic counselors providing services to deaf individuals are encouraged to assess not only cultural affiliation and language preference but to also inquire about the individual’s beliefs related to why they are deaf. By doing so, the genetic counselor obtains information about how best to provide genetic counseling services to the individual as well as possible indicators of the individual’s baseline knowledge of genetics.…”

Section: Discussionmentioning

confidence: 99%

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Effect of Pre‐test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

Baldwin

Boudreault²,

Fox³

et al. 2011

Journal of Genetic Counseling

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Empirical data on genetic counseling outcomes in the deaf population are needed to better serve this population. This study was an examination of genetics knowledge before and after culturally and linguistically appropriate pre-test genetic counseling in a diverse deaf adult sample. Individuals ≥18 years old with early-onset sensorineural deafness were offered connexin-26/30 testing and genetic counseling. Participants completed questionnaires containing 10 genetics knowledge items at baseline and following pre-test genetic counseling. The effects of genetic counseling, prior beliefs about etiology, and participant’s preferred language on genetics knowledge scores were assessed (n = 244). Pre-test genetic counseling (p = .0007), language (p < .0001), prior beliefs (p < .0001), and the interaction between counseling and beliefs (p = .035) were predictors of genetics knowledge. American Sign Language (ASL)-users and participants with “non-genetic/unknown” prior beliefs had lower knowledge scores than English-users and participants with “genetic” prior beliefs, respectively. Genetics knowledge improved after genetic counseling regardless of participants’ language; knowledge change was greater for the “non-genetic/unknown” beliefs group than the “genetic” beliefs group. ASL-users’ lower knowledge scores are consistent with evidence that ethnic and cultural minority groups have less genetics knowledge, perhaps from exposure and access disparities. Culturally and linguistically appropriate pre-test genetic counseling significantly improved deaf individuals’ genetics knowledge. Assessing deaf individuals’ prior beliefs is important for enhancing genetics knowledge.

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Section: Discussionmentioning

confidence: 85%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Effect of Pre‐test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

Baldwin

Boudreault²,

Fox³

et al. 2011

Journal of Genetic Counseling

View full text Add to dashboard Cite

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“…Deaf individuals use facial expressions and body language to add meaning and context to ASL, therefore a certified ASL interpreter considers this paralanguage as an important part of the translation process. In the outpatient clinical setting, the majority of Deaf adults prefer to utilize a fluent ASL interpreter (Middleton et al., ). However, there may be situations in which a Deaf patient does not wish to have an interpreter present.…”

Section: Introductionmentioning

confidence: 99%

Deaf adults and health care: Giving voice to their stories

Sheppard

2014

Journal of the American Association of Nurse Practitioners

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Purpose Deaf adults often experience significant healthcare disparities. This article gives voice to nine Deaf adults as they describe their lifelong experiences with health care. Data sources Qualitative, hermeneutic interviews with nine culturally Deaf adults. Each participant was interviewed three times, aided by a certified American Sign Language interpreter. Conclusions Participants recalled childhood memories of painful and frightening procedures to investigate the deafness, which frequently overshadowed emotional needs. Communication barriers between Deaf patients and providers left the patients not understanding the diagnosis or treatment, medication use, or side effects. Descriptions included distressing or embarrassing interactions, and cries for help gone unanswered. Consequently, minimal health promotion occurs and most participants rely on the emergency department for health care. Implications for practice Deaf patients should be screened for physical, sexual, and emotional abuse at every healthcare encounter. Assessments should include social support and social resources. Specific questions about pain, sleep, appetite changes, suicidal thoughts, and interest may help to identify manifestations of illness and health. Certified interpreters may be useful during the healthcare encounter, but ultimately the Deaf patient is best positioned to identify the most comfortable or meaningful means of communication between patient and healthcare provider.

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“…The use of interpreters is commonly considered the most effective way of facilitating communication between a signing Deaf person and a hearing person MacKinney, Walters, Bird, & Nattinger, 1995;Middleton et al, 2010). However, as alluded to above, the use of interpreters is not without issues.…”

Section: Interpreter Issuesmentioning

confidence: 99%

Looking beyond discussions of medical and social models: A critical qualitative examination of deaf health disparities

Ferndale¹

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There is strong empirical evidence, from Australia and internationally, that people living with hearing loss or deafness experience substantial challenges to accessing health services, resulting in poor health. Despite evidence demonstrating the success of hearing technology for correcting hearing losses and deafness, health disparities between hearing people and people living with hearing loss or deafness continue. Empirical work in the area of deafness is contextualised by ongoing theoretical discussions of the medical and social models of disability and, by extension, deafness. Despite consensus among theorists, even among those who are living with a disability themselves, that the medical model is restrictive, it is clear that this model continues to shape research priorities and dominant practices and ideology in society. While social models of disability/deafness tend to be favoured among theorists and discussed as preferable to the medical model and inclusive of the lived experiences of deafness, academics continue to debate and refine the social models of deafness. These debates largely remain theoretical as there is limited empirical work that has explored how these models, and related discourses, operate within society.Located within a social constructionist framework, this thesis provides a reflexive account of how I explored ways that deafness is constructed within Australian society and how these constructions contribute to the health disparities between hearing people and people living in Australia with hearing loss or deafness. The aims of this thesis are two-fold,(1) to explore how people living with hearing loss or deafness construct experiences of deafness and how these constructs relate (if at all) to theoretical discussions of disability or deafness; (2) to examine how health professionals construct experiences of treating clients living with hearing loss or deafness. These aims are achieved in two separate studies. The first is a mixed methods study of an online forum with people living with hearing loss or iii deafness and the second, interviews with health professionals who have treated clients living with hearing loss or deafness.Chapter 1 is an outline the structure of the thesis, describing both the research problem and my position as the author. In Chapter 2, I introduce social constructionism and the tensions that exist between this framework and positivism, and how these frameworks have shaped the thesis. Building on this, I provide an overview of the research methods implemented in the thesis. In order to contextualise the research presented in this thesis, information relevant to deafness and the Australian context is discussed at length in Chapter 3. Chapter 4 and 5 are a review of the literature relevant to how deafness has been studied in the past. This review covers deafness as a socially constructed phenomenon and critiques the empirical evidence pertaining to the health-related quality of life, health knowledge and barriers to accessing health that people living with ...

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Preferences for communication in clinic from deaf people: a cross‐sectional study

Cited by 40 publications

References 16 publications

Effect of Pre‐test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

Effect of Pre‐test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

Deaf adults and health care: Giving voice to their stories

Looking beyond discussions of medical and social models: A critical qualitative examination of deaf health disparities

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