An exploration of deaf women's access to mental health nurse education in the United Kingdom

Inclusive library services for deaf people: an overview from the social model perspective.

The right to be heard: Citizenship and language

Deafness and Ethnicity: Services, Policy and Politics By Waqar Ahmad, Aliya Darr, Lesley Jones, and Gohar Nisa The Policy Press, University of Bristol, 1998. ISBN 1-86134-088-5. 142 pages, (12.99 UK Pounds Sterling. Obtainable at www.forestbooks.com) Deafness and Ethnicity: Services, Policy and Politics, captures the essence of making services accessible in full awareness of the cultural, social and religious backgrounds of minority ethnic deaf people. The authors used first hand qualitative data to shed light on the issues affecting minority ethnic deaf people in accessing various services in England. Their numerous implicit solutions to the problems of providing accessible services to minority ethnic deaf people is what makes this book a necessary tool for service provision agencies and professionals aiming at meeting the needs of minority ethnic deaf people in the provision of services. The 9 chapters are comprehensive and easy to read, and for most part, structured to reflect sequential steps in transition from one chapter to the next. The references provided (11 pages) will be a useful resource to workers interested in current research and in the provision of accessible services to minority ethnic deaf people. In Chapter 1, the authors observed that minority ethnic people in general are disadvantaged in accessing various services. However, research into the experiences of deaf people from minority groups and their families in accessing health, educational, social and other services is scanty. Consequently, this book attempts to fill an important gap and to provide information on how services are responding or not responding to the needs of ethnic minority deaf people. Much of the evidence presented in this book was the outgrowth of the authors' research into initiatives for minority ethnic deaf people across Britain. A major problem discussed in Chapter 2, indeed the recurring theme throughout this book, is the language and communication barriers encountered by minority ethnic deaf people in attempting to access services. Compared to the general population, increasing immigrant minority ethnic deaf people of Asian, African, and the Caribbean origins whose first language is not English or (British) sign language are found to be less well informed about their entitlements to a range of services and social welfare packages. Reliance on relatives and friends for information and interpretation remains unsatisfactory in that only a limited range of services could be accessible. It is further considered in Chapter 3 that racist stereotypes held by service providers and institutional racism restrict access to a range of services by minority ethnic people. The medicalization of service provision, pathologizing the behavior of deaf people, the language and politics of defining, describing and measuring deafness and the ways deafness is represented in the media constitute additional constraints to accessing services by minority ethnic deaf people. This is because these constructs have strong influence on the public and policy-makers' perceptions of deafness. These stereotypical views need to be changed and the diversity among deaf people needs to be recognized if services are to be made accessible and meaningful for them. The authors argue that if all relevant services are to be accessible to minority ethnic deaf people, it is imperative to understand the nature and politics of racism, culture and identity. Such an understanding could result to changes in legal and institutional structures and practices which in turn could ensure accessibility of services by these people. There are some initiatives that could be considered examples of good practice discussed in Chapter 4 focusing on educational, social, cultural and religious activities across Britain aimed at providing accessible services to minority ethnic deaf people by some local authorities and minority ethnic groups. …

The meaningful engagement of Deaf people in research poses ethical challenges, yet Deaf people are systematically underrepresented in discussions on ethical research conduct. Our study explores experiences and opinions of Polish Deaf people about research through a bilingual open-ended online survey. We gathered 52 responses and analysed them in collaboration with a Deaf advisory group using an experiential approach to reflexive thematic analysis. We developed six themes, reflecting the challenges, needs and aspirations of Deaf people, embraced under one overarching theme: Dialogue matters. Our study highlights social and epistemic inequalities faced by Deaf people in research, as well as the need for greater accessibility and trust. We discuss how the Polish context both reflects and differs from the experiences of Deaf people from other countries. The findings may inform evidence-based recommendations for scientific cooperation between Deaf and hearing people.

Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.

PurposeTo translate the health questionnaire EuroQol EQ-5D-5L into British Sign Language (BSL), to test its reliability with the signing Deaf population of BSL users in the UK and to validate its psychometric properties.MethodsThe EQ-5D-5L BSL was developed following the international standard for translation required by EuroQol, with additional agreed features appropriate to a visual language. Data collection used an online platform to view the signed (BSL) version of the tests. The psychometric testing included content validity, assessed by interviewing a small sample of Deaf people. Reliability was tested by internal consistency of the items and test–retest, and convergent validity was assessed by determining how well EQ-5D-5L BSL correlates with CORE-10 BSL and CORE-6D BSL.ResultsThe psychometric properties of the EQ-5D-5L BSL are good, indicating that it can be used to measure health status in the Deaf signing population in the UK. Convergent validity between EQ-5D-5L BSL and CORE-10 BSL and CORE-6D BSL is consistent, demonstrating that the BSL version of EQ-5D-5L is a good measure of the health status of an individual. The test–retest reliability of EQ-5D-5L BSL, for each dimension of health, was shown to have Cohen’s kappa values of 0.47–0.61; these were in the range of moderate to good and were therefore acceptable.ConclusionsThis is the first time EQ-5D-5L has been translated into a signed language for use with Deaf people and is a significant step forward towards conducting studies of health status and cost-effectiveness in this population.

Objectives: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural–linguistic status.Methods: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18–60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18–60. Data were subjected to a thematic content analysis.Results: Participants’ concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia.Conclusions: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.

BackgroundThe PHQ-9 and the GAD-7 assess depression and anxiety respectively. There are standardised, reliability-tested versions in BSL (British Sign Language) that are used with Deaf users of the IAPT service. The aim of this study is to determine their appropriate clinical cut-offs when used with Deaf people who sign and to examine the operating characteristics for PHQ-9 BSL and GAD-7 BSL with a clinical Deaf population.MethodsTwo datasets were compared: (i) dataset (n = 502) from a specialist IAPT service for Deaf people; and (ii) dataset (n = 85) from our existing study of Deaf people who self-reported having no mental health difficulties. Parameter estimates, with the precision of AUC value, sensitivity, specificity, positive predicted value (ppv) and negative predicted value (npv), were carried out to provide the details of the clinical cut-offs. Three statistical choices were included: Maximising (Youden: maximising sensitivity + specificity), Equalising (Sensitivity = Specificity) and Prioritising treatment (False Negative twice as bad as False Positive). Standard measures (as defined by IAPT) were applied to examine caseness, recovery, reliable change and reliable recovery for the first dataset.ResultsThe clinical cut-offs for PHQ-9 BSL and GAD-7 BSL are 8 and 6 respectively. This compares with the original English version cut-offs in the hearing population of 10 and 8 respectively. The three different statistical choices for calculating clinical cut-offs all showed a lower clinical cut-off for the Deaf population with respect to the PHQ-9 BSL and GAD-7 BSL with the exception of the Maximising criteria when used with the PHQ-9 BSL. Applying the new clinical cut-offs, the percentage of Deaf BSL IAPT service users showing reliable recovery is 54.0 % compared to 63.7 % using the cut-off scores used for English speaking hearing people. These compare favourably with national IAPT data for the general population.ConclusionsThe correct clinical cut-offs for the PHQ-9 BSL and GAD-7 BSL enable meaningful measures of clinical effectiveness and facilitate appropriate access to treatment when required.

Understanding the personhood of Deaf people with dementia: Methodological issues

Little research has been undertaken into the profession of British Sign Language (BSL) teaching, despite a huge increase in the number of BSL classes offered over the past twenty years. Following the introduction of Qualified Teacher Learning and Skills standards in 2007, BSL teachers working in ‘further education’ (FE) colleges were required to hold formal teaching qualifications for the first time. Therefore, it is timely to investigate the impact of these changes on the teaching of BSL in the five years since their introduction. This new framework offered the opportunity to greatly enhance BSL teaching through the development of professional skills among BSL teachers but the stark reality is that this has not occurred. This article draws on two research projects that investigated the teaching qualifications held by BSL teachers, their career and professional development aspirations and their views on the training opportunities currently available to deaf sign language users. The research highlighted that there is a need to improve access to relevant information, establish and strengthen peer support networks as well as to establish a designated career path for BSL teachers. Although there are a number of training programmes by which teachers can achieve these new minimum core requirements, very few are specifically tailored to the pedagogic needs of deaf people wishing to gain these qualifications. The potential impact of recent government proposals for teacher qualifications in the FE sector will also be addressed, together with the likely consequences for those wishing to train as BSL teachers.

BackgroundImproving Access to Psychological Therapies (IAPT) is a National Institute for Health and Care Excellence-approved approach to intervention for depression and/or anxiety. This exploratory study sets the groundwork for comparing psychological therapies for Deaf sign language users experiencing anxiety and/or depression, delivered in British Sign Language (BSL) by a Deaf therapist with usual access through an interpreter within the IAPT national programme.Objectives(1) To explore the following questions: (a) is BSL-IAPT more effective than standard IAPT for Deaf people with anxiety and/or depression? and (b) is any additional benefit from BSL-IAPT worth any additional cost to provide it? (2) To establish relevant BSL versions of assessment tools and methods to answer research questions (a) and (b). (3) To gauge the feasibility of a larger-scale definitive study and to inform its future design.DesignA mixed-methods exploratory study combing an economic model to synthesise data from multiple sources; a qualitative study of understanding and acceptability of randomisation and trial terminology; statistical determination of clinical cut-off points of standardised assessments in BSL; secondary data analysis of anonymised IAPT client records; realist inquiry incorporating interviews with service providers and survey results.SettingsIAPT service providers (NHS and private); the Deaf community.ParticipantsDeaf people who use BSL and who are clients of IAPT services (n = 502); healthy Deaf volunteers (n = 104); IAPT service providers (NHS and private) (n = 118).InterventionsIAPT at steps 2 and 3.Main outcome measuresReliable recovery and reliable improvement defined by IAPT; Deaf community views on the acceptability of randomisation; BSL terminology for trial-related language; clinical cut-off measurements for the BSL versions of the Patient Health Questionnaire-9 items (PHQ-9) and the Generalised Anxiety Disorder-7 (GAD-7); a valid BSL version of the EuroQol-5 Dimensions five-level version (EQ-5D-5L); costs, quality-adjusted life-years and incremental cost-effectiveness ratios.Data sourcesIAPT service provider anonymised records of the characteristics and clinical outcomes of Deaf BSL users of BSL-IAPT and of standard IAPT; published literature.ResultsRandomisation may be acceptable to Deaf people who use IAPT if linguistic and cultural requirements are addressed. Specifications for effective information in BSL for recruitment have been established. A valid EQ-5D-5L in BSL has been produced. The clinical cut-off point for the GAD-7 BSL is 6 and for the PHQ-9 BSL is 8. No significant difference in rates of reliable recovery and reliable improvement between Deaf users of standard IAPT or BSL-IAPT has been found. Whether or not BSL-IAPT is more cost-effective than standard IAPT is uncertain.LimitationsThe small number of participating standard IAPT services who have seen Deaf clients means that there is statistical uncertainty in the comparable clinical outcome result. Clinical cut-off scores have not been verified through gold standard clinical interview methodology. Limited data availability means that whether or not BSL-IAPT is more cost-effective than standard IAPT is uncertain.ConclusionsThere is a lack of evidence to definitively compare reliable recovery and reliable improvement between Deaf users of standard IAPT and BSL-IAPT. Instrumentation and prerequisites for a larger-scale study have been established.Future workA prospective observational study for definitive results is justified.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

This study concerns older Deaf sign language users in the UK. Its aim was to explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective. A purposive sample of 26 Deaf people without dementia participated in one of three focus groups facilitated directly in British Sign Language (BSL) without an intermediate interpreter. The sample was differentiated by age, role in the Deaf community, and diversity of educational attainment and professional experience. A phenomenological approach underpinned the thematic analysis of data. The findings demonstrate: (i) translation into (BSL) is a necessary but not sufficient condition to support understanding. Attention to culturally preferred means of engagement with information is vital; (ii) the content of information is best presented utilising structures and formats which cohere with Deaf people's visual cognitive strengths; and (iii) the importance of cultural values and cultural practices in raising awareness and building understanding of dementia. These include collective rather than individual responsibility for knowledge transfer and the pan-national nature of knowledge transfer among Deaf people(s). The discussion demonstrates how these specific features of effective information access and awareness building have universal implications relevant to public engagement and the promotion of general knowledge consistent with the National Dementia Strategy (England).

BackgroundThere are an estimated 125,000 deaf people in the UK who use British Sign Language (BSL) as their main form of communication, but there are no child mental health screening instruments that are accessible to deaf children whose first or main language is BSL (or to deaf adults reporting on children). This study sought to develop a new BSL translation of a commonly used mental health screening tool (Strengths and Difficulties Questionnaire, SDQ), with versions available for deaf young people (aged 11–16 years), parents and teachers. The psychometric properties of this translation, and its validity for use with the deaf signing UK population, were also investigated.Objectives(1) To translate the SDQ into BSL; and (2) to use this new version with a cohort of deaf children, deaf parents and deaf teachers fluent in BSL across England, and validate it against a ‘gold standard’ clinical interview.MethodsThis study was split into two broad phases: translation and validation. The BSL SDQ was developed using a rigorous translation/back-translation methodology with additional checks, and we have defined high-quality standards for the translation of written/oral to visual languages. We compared all three versions of the SDQ (deaf parent, deaf teacher and deaf young person) with a gold standard clinical interview by child mental health clinicians experienced in working with deaf children. We also carried out a range of reliability and validity checks.ResultsThe SDQ was successfully translated using a careful methodology that took into account the linguistic and cultural aspects of translating a written/verbal language to a visual one. We recruited 144 deaf young people (aged 11–16 years), 191 deaf parents of a child aged either 4–10 or 11–16 years (the child could be hearing or deaf) and 77 deaf teachers and teaching assistants. We sought deaf people whose main or preferred language was BSL. We also recruited hearing participants to aid cross-validation. We found that the test–retest reliability, factor analysis and internal consistency of the three new scales were broadly similar to those of other translated versions of the SDQ. We also found that using the established multi-informant SDQ scoring algorithm there was good sensitivity (76%) and specificity (73%) against the gold standard clinical interview assessment. The SDQ was successfully validated and can now be used in clinical practice and research. Factor analysis suggests that the instrument is good for screening for mental health problems but not for the identification of specific disorders, and so should be used as a screening instrument. It will also enable outcomes to be monitored.ConclusionsA BSL version of the SDQ can now be used for national studies screening for mental health problems in deaf children. This will help us better understand the needs of deaf children and will enable earlier detection of mental health difficulties. It can also be used within clinical settings to monitor outcomes.Future workFuture work may focus on using the SDQ in epidemiological research, and developing new assessment instruments for deaf children to improve assessment methods in the deaf population.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Dissociating linguistic and nonlinguistic gestural communication in the brain

The cultural diversity of the UK poses a challenge for speech and language therapists. Work with children from language minorities has been documented, but less so with adults. This raises the question of whether adults from minority communities are gaining access to services. Deaf people who use British Sign Language (BSL) are one language minority. It is known that sign language is vulnerable to neurological damage. Of interest is whether Deaf people with such damage are referred to speech and language therapy (SLT). The aim was to find out how many deaf people were referred to SLT services in the UK over the last 5 years, and reasons for the referrals. We also explored the service offered to Deaf referrals, and whether SLT teams had access to BSL skills, either internally or via interpreters. A brief questionnaire was sent to the managers of all SLT services in the UK (n=264). There was as 60% response rate. Only 34 services received referrals of Deaf patients, with a total of 39 Deaf people seen. This is substantially below the predicted rates. Most referrals were for dysphagia, or dysphagia with communication impairments. In line with this, dysphagia management was the dominant service, although most referrals also received language assessment. Most teams did not have signing staff members and access to interpreters was variable. The results suggest that many Deaf people are not gaining access to SLT after neurological impairment. Those who are referred are unlikely to receive language therapy. The instigation of a national team specializing in BSL impairments is recommended.