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.

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.

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.

READY is a self-report prospective longitudinal study of deaf and hard of hearing (DHH) young people aged 16 to 19 years on entry. Its overarching aim is to explore the risk and protective factors for successful transition to adulthood. This article introduces the cohort of 163 DHH young people, background characteristics and study design. Focusing on self-determination and subjective well-being only, those who completed the assessments in written English (n = 133) score significantly lower than general population comparators. Sociodemographic variables explain very little of the variance in well-being scores; higher levels of self-determination are a predictor of higher levels of well-being, outweighing the influence of any background characteristics. Although women and those who are LGBTQ+ have statistically significantly lower well-being scores, these aspects of their identity are not predictive risk factors. These results add to the case for self-determination interventions to support better well-being amongst DHH young people.