Deaf British Sign Language Users Research Articles

Cultural competence in NHS hearing aid clinics: a mixed-methods case study of services for Deaf British sign language users in the UK

BackgroundThis study identified and explored how National Health Service (NHS) hearing aid clinics address cultural competence concerning Deaf British Sign Language (BSL) users. This was approached by (i) investigating how organisational processes meet the needs of Deaf signers from a hospital and hearing aid clinic perspective, (ii) analysing policies and guidelines to investigate if they equip practitioners to meet the needs of Deaf signers and (iii) exploring with practitioners who work in hearing aid clinics about their experiences of working with Deaf signers.MethodsThis study utilised a mixed-methods multiple case study design, incorporating documentary analysis and semi-structured interviews. Interview analysis was conducted using Reflexive Thematic Analysis (RTA). The research encompassed two hearing aid clinics in separate hospitals, producing 19 documents and eight interviews (four at each site) with audiologists ensuring a representative mix of professional experience levels.ResultsFour themes emerged from the integrated analysis: (1) Understanding Deaf signers; (2) Communicating with Deaf signers; (3) Barriers and Facilitators and (4) Service improvement. A noticeable gap in understanding BSL as both a language and a cultural system was apparent across various policies, strategies, training programmes and staff expertise. Over-reliance on interpreters provided a false sense of accessibility and most participants felt tentative to engage directly with Deaf signers. Positive practices observed at Sites A and B encompassed accurate identification of patients as Deaf signers, improved interpreter availability, communication methods, enhanced training and the encouragement of professional self-awareness.ConclusionThis is the first study that explores cultural competence of hearing aid clinics and its staff concerning Deaf signers in the UK. The results show both clinics require development to become an effective provider for culturally Deaf signers. Examples of how to design culturally competent practices have been provided to assist hearing aid clinics. The findings may be applicable to other underrepresented groups who are not typical users of conventional, acoustic hearing aids provided by the NHS.

“What have YOU done in the past few years?” Deaf BSL users’ experiences of caring for people with dementia during COVID-19

PurposeDeaf people, who are British Sign Language (BSL) users, are, at times, carers for their parent or spouse when they have dementia. This can be a challenging role for the wider population, but if the common language in service provision is not one you share, then this care can be impacted by the lack of formal structures that support the Deaf caring role. This study aims to explore the experiences of Deaf carers supporting people with dementia, in an unpaid role, during the COVID-19 pandemic to understand more about their potential support preferences.Design/methodology/approachOnline interviews with seven Deaf carers sharing their experiences of supporting their family member with dementia happened during the first year of the COVID-19 pandemic. Interpretive phenomenological analysis was used to qualitatively examine each Deaf carers’ stories.FindingsFindings included Deaf carers’ lack of access to information, surrendering their autonomy to hearing family members to communicate with health-care professionals, with overarching isolation within local communities and online. Findings show a widespread infrastructural failure to meet the linguistic and specific support needs of this minority population.Research limitations/implicationsSeven Deaf carers took part in this study. This means the findings may not be generalisable.Practical implicationsHealth-care professionals and social care structures need to develop robust clear communication pathways for Deaf carers to receive the support needed to provide effective care.Social implicationsIf health-care professionals undertake training about Deaf people and BSL, that will mean Deaf carers will receive effective support to be able to care for a person living with dementia. This means that their Deaf identity will be recognised within the mainstream and the care provided will be much more effective for the person with dementia.Originality/valueTo the best of the authors’ knowledge, these are the first interviews undertaken with Deaf carers of people with dementia during the COVID-19 pandemic and its subsequent lockdowns. Understanding everyday barriers and social care limitations in terms of language access will enable Deaf carers to assert their rights and for care professionals to adapt their communication to match the individuals involved in the care package.

Health State Values of Deaf British Sign Language (BSL) Users in the UK: An Application of the BSL Version of the EQ-5D-5L.

Deaf people experience health inequalities compared to hearing populations. The EQ-5D, a widely used, standardised, generic measure of health status, which is available in over 100 languages, was recently translated into British Sign Language (BSL) and initial validation conducted. Using data from this previous study of the EQ-5D-5L BSL we aimed to assess (1) whether responses to the EQ-5D differed between a sample of Deaf BSL users and the general population (2) whether socio-demographic characteristics and clinical measures were associated with EQ-5D index scores in Deaf BSL users and (3) the impact of psychological distress and depression on health status in Deaf BSL users. Published population tariffs were applied to the EQ-5D-5L BSL, using the crosswalk methodology, to estimate health state values. Descriptive statistics (mean, SD, 95% CIs) compared Deaf BSL signer participants' (n = 92) responses to data from the general population. Descriptive statistics and linear regression analyses were used to identify associations between Deaf participants' EQ-5D index scores, socio-demographic characteristics, physical health and depression. Descriptive statistics compared the BSL index scores for people with psychological distress/depression to those from two cross-sectional, population-based surveys. Using the EQ-5D, Deaf participants had lower mean health-state values (0.78; 95% CI 0.72-0.83; n = 89) than people participating in the 2017 Health Survey for England (0.84; 95% CI 0.83-0.84; n = 7169). Unlike larger studies, such as the Health Survey for England sample, there was insufficient evidence to assess whether Deaf participants' EQ-5D health state values were associated with their demographic characteristics. Nevertheless, analysis of the BSL study data indicated long-standing physical illness was associated with lower health-state values (ordinary least squares coefficient = -0.354; 95% CI -0.484, -0.224; p < 0.01; n = 82). Forty-three percent of our Deaf participants had depression. Participants with depression had reduced health status (0.67; 95% CI 0.58-0.77; n = 36) compared to those with no psychological distress or depression (0.87; 95% CI 0.61-0.67; n = 36). The study highlights reduced health in the Deaf signing population, compared to the general population. Public health initiatives focused on BSL users, aiming to increase physical and mental health, are needed to address this gap.

Assessing Deaf patients in the neurology clinic

There are over 87 000 Deaf people in the UK with British Sign Language (BSL) as their first language.1 Few healthcare professionals receive training in Deaf awareness or in BSL,...

The validation of the Short Warwick-Edinburgh Mental Well-Being Scale (SWEMWBS) with Deaf British Sign Language users in the UK

BackgroundThere is no validated measure of positive mental well-being that is suitable for Deaf people who use a signed language such as British Sign Language (BSL). This impedes inclusion of this population in a range of research designed to evaluate effectiveness of interventions. The study aims were: (i) to translate the original English version of SWEMWBS into BSL and to test the SWEMWBS BSL with the Deaf population in the UK who use BSL; (ii) to examine its psychometric properties; and (iii) to establish the validity and reliability of the SWEMWBS BSL.MethodsThe SWEMWBS was translated into BSL following a six stage translation procedure and in consultation with the originators. The draft version was piloted with Deaf BSL users (n = 96) who also completed the CORE-OM BSL well-being subscale and the EQ-5D VAS BSL. Reliability was explored using Cronbach’s alpha for internal consistency and ICC for test-retest reliability. Validity was explored by using Kendall’s tau correction for convergent validity and an exploratory factor analysis for construct validity.ResultsThe internal consistency for the reliability of the SWEMWBS BSL was found to be good and the test-retest one week apart showed an acceptable reliability. There was good convergent validity of the SWEMWBS BSL with the well-being subscale of the CORE-OM BSL and the EQ-5D VAS BSL.ConclusionsThe SWEMWBS BSL can be used with a Deaf population of BSL users. This is the first validated version of a BSL instrument that focuses solely on positively phrased questions for measuring mental well-being.

Evaluating the effectiveness and cost-effectiveness of British Sign Language Improving Access to Psychological Therapies: an exploratory study

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.

A qualitative exploration of trial-related terminology in a study involving Deaf British Sign Language users.

BackgroundInternationally, few clinical trials have involved Deaf people who use a signed language and none have involved BSL (British Sign Language) users. Appropriate terminology in BSL for key concepts in clinical trials that are relevant to recruitment and participant information materials, to support informed consent, do not exist. Barriers to conceptual understanding of trial participation and sources of misunderstanding relevant to the Deaf community are undocumented.MethodsA qualitative, community participatory exploration of trial terminology including conceptual understanding of ‘randomisation’, ‘trial’, ‘informed choice’ and ‘consent’ was facilitated in BSL involving 19 participants in five focus groups. Data were video-recorded and analysed in source language (BSL) using a phenomenological approach.Results and discussionSix necessary conditions for developing trial information to support comprehension were identified. These included: developing appropriate expressions and terminology from a community basis, rather than testing out previously derived translations from a different language; paying attention to language-specific features which support best means of expression (in the case of BSL expectations of specificity, verb directionality, handshape); bilingual influences on comprehension; deliberate orientation of information to avoid misunderstanding not just to promote accessibility; sensitivity to barriers to discussion about intelligibility of information that are cultural and social in origin, rather than linguistic; the importance of using contemporary language-in-use, rather than jargon-free or plain language, to support meaningful understanding.ConclusionsThe study reinforces the ethical imperative to ensure trial participants who are Deaf are provided with optimum resources to understand the implications of participation and to make an informed choice. Results are relevant to the development of trial information in other signed languages as well as in spoken/written languages when participants’ language use is different from the dominant language of the country.