Health outcomes in Deaf signing populations: A systematic review.

OBJECTIVES: (i) To identify peer reviewed publications reporting the mental and/or physical health outcomes of Deaf adults who are sign language users and to synthesise evidence; (ii) If data available, to analyse how the health of the adult Deaf population compares to that of the general population; (iii) to evaluate the quality of evidence in the identified publications; (iv) to identify limitations of the current evidence base and suggest directions for future research. DESIGN: Systematic review. DATA SOURCES: Medline, Embase, PsychINFO, and Web of Science. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: The inclusion criteria were Deaf adult populations who used a signed language, all study types, including methods-focused papers which also contain results in relation to health outcomes of Deaf signing populations. Full-text articles, published in peer-review journals were searched up to 13th June 2023, published in English or a signed language such as ASL (American Sign Language). DATA EXTRACTION: Supported by the Rayyan systematic review software, two authors independently reviewed identified publications at each screening stage (primary and secondary). A third reviewer was consulted to settle any disagreements. Comprehensive data extraction included research design, study sample, methodology, findings, and a quality assessment. RESULTS: Of the 35 included studies, the majority (25 out of 35) concerned mental health outcomes. The findings from this review highlighted the inequalities in health and mental health outcomes for Deaf signing populations in comparison with the general population, gaps in the range of conditions studied in relation to Deaf people, and the poor quality of available data. CONCLUSIONS: Population sample definition and consistency of standards of reporting of health outcomes for Deaf people who use sign language should be improved. Further research on health outcomes not previously reported is needed to gain better understanding of Deaf people's state of health.

Political participation among deaf youth in Great Britain.

Variations in political participation are linked to demographic factors, socioeconomic disparities, and cultural-ethnic diversity. Existing research has primarily explored reduced political involvement among individuals with disabilities, particularly in electoral politics. However, little research has attended the involvement of deaf people specifically. This is of interest because deaf youth are at an intersection of disability, language and cultural identity with their language affiliations and rejection or acceptance of disability evolving through childhood. This study draws from original data collected via an online survey, comprising 163 deaf young respondents aged 16-19 in Great Britain. We compare their levels of political participation with those of general population peers to explore how sociodemographic factors, alongside variations in self-identification as deaf, and meaningful interactions with other deaf people contribute to explain their political engagement. The results challenge conventional wisdom by demonstrating that deaf youth participate more actively in politics than their hearing peers in various forms of political involvement, including collective, contact, and institutional activism. We also recognize differences among deaf youth and propose that social aspects of identity formation, particularly embracing a deaf identity and having deaf friends, can boost certain forms of political engagement. In summary, this study underscores the importance of acknowledging the diversity of deaf youth in terms of affiliation with various forms of deaf identity, rendering their experience different from both disabled and hearing youth. By identifying the factors driving heightened political participation, policymakers and advocates can develop strategies to enhance political engagement among all young people, regardless of their hearing status.

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

BACKGROUND: This 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. METHODS: This 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. RESULTS: Four 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. CONCLUSION: This 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 is the efficacy and effectiveness of telemedicine intervention for deaf signing populations in comparison to face-to-face interventions? A systematic review.

BACKGROUND: Deaf signing populations face inequality in both access to health services and health outcomes. Telemedicine intervention might offer a potential solution to address these inequalities in mental health and health related services, therefore a systematic review was carried out. The review question was: "What is the efficacy and effectiveness of telemedicine intervention for Deaf signing populations in comparison to face-to-face interventions?". METHODS: The PICO framework was applied to identify the components of the review question for this study. The inclusion criteria were: Deaf signing populations; any intervention that includes the delivery of telemedicine therapy and/or the delivery of assessment (e.g. psychological assessments) using telemedicine; and any evidence for the benefits, efficacy and effectiveness of telemedicine intervention with Deaf people whether in health and/or mental health services. The databases PsycINFO, PubMed, Web of Science, CINAHL, and Medline were searched up to August 2021. RESULTS: Following the search strategy, and after the duplicates were removed, 247 records were identified. Following screening, 232 were removed as they did not meet the inclusion criteria. The remaining 15 full-text articles were assessed for eligibility. Only two met the criteria to be included in the review (both concerned telemedicine and mental health interventions). However, they did not fully answer the review's research question. Therefore, the evidence gap remains regarding the effectiveness of telemedicine intervention for Deaf people. CONCLUSIONS: The review has identified a gap in the knowledge on the efficacy and effectiveness of telemedicine intervention for Deaf people when compared with face-to-face interventions.

Abilities and Disabilities Among Children With Developmental Language Disorder.

PURPOSE: The aim of this study was to situate developmental language disorder (DLD) within the impairment and disability framework of the International Classification of Functioning, Disability, and Health (ICF); describe the functional strengths and weaknesses of a cohort of first-grade children with DLD and their peers; and explore the ways that language-related disabilities relate to language impairment, developmental risk, and receipt of language services. METHOD: We queried the caregivers of 35 children with DLD and 44 peers with typical language development about their children's language-related functions, developmental risks, and language services using mixed quantitative and qualitative methods. RESULTS: The children with DLD presented with weaknesses in domains that are highly dependent upon language skill, including communication, community function, interpersonal relationships, and academics. They presented with strengths in domestic and personal aspects of daily living, play and coping aspects of socialization, and gross motor function. Caregivers of children with DLD expressed pride in their children's agentive and prosocial qualities. Consistent with the ICF, what distinguished children with DLD who had functional weaknesses and disabilities from those who had healthy function was not the severity of language impairment as measured by decontextualized tests of language skill, but the presence of cumulative developmental risks. Compared to those with healthy function, a larger portion of children with weaknesses and disabilities were receiving language services; however, two girls who had disabilities despite mild levels of impairment were without services. CONCLUSIONS: Children with DLD present with predictable strengths and weaknesses in everyday language-related functioning. For some children, the weaknesses are mild, but for others, they limit function to a greater extent and should be considered disabilities. The severity of language impairment is not a strong indicator of language-related function and, therefore, is not a good metric for determining service qualification.

Introducing the READY Study: DHH Young people's Well-Being and Self-Determination.

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.

Comparison of Diagnostic Profiles of Deaf and Hearing Children with a Diagnosis of Autism.

There is limited research comparing the presentation of autism in deaf and hearing children and young people. These comparisons are important to facilitate accurate diagnosis, as rates of misdiagnosis and delay in diagnosis amongst deaf children and young people are high. The aim of this study was to compare diagnostic assessment profiles of a UK cohort of autistic deaf and hearing children and young people. The Autism Diagnostic Interview-Revised-Deaf adaptation was completed with the parents of 106 children and young people (deaf children = 65; hearing children = 41). The majority of items explored showed no significant differences between deaf and hearing children and young people. Differences were found in peer relationships, where autistic deaf participants were less likely to respond to the approaches of other children or play imaginatively with peers. These findings need to be taken into consideration by clinicians in the assessment process.

Audiological profile of deaf and hard-of-hearing children under six years old in the "HI HOPES cohort" in South Africa (2006-2011).

BACKGROUND: This study concerns deaf children under six years in the South African HI HOPES Cohort. OBJECTIVE: To examine their audiological profile, aetiological risk factors for infant hearing loss as well as the relationship between identification, amplification and socio-economic influences. DESIGN: Using a cohort design, secondary data analysis of a pre-existing dataset demonstrated adequate representation of South African demographic characteristics. STUDY SAMPLE: A total of 532 deaf and hard-of-hearing infants enrolled in the HI HOPES early intervention programme in three provinces (2006-2011). RESULTS: The median age of identification of children with bilateral hearing loss (n = 502) was 24.0 months (IQR = 12-36 months). Infants with aetiological risk factors were identified later than those without risk factors, and the latest age of identification (28.5 months) was for those with three aetiological risk factors (n = 42). The median age of amplification was 32 months with 102 children eligible for amplification at 31.1 months still unamplified. Early identification did not imply early amplification, and the more economically advantaged a Province the smaller the gap between ages of identification and amplification. CONCLUSIONS: In a field with little population-level evidence, the size, and representativeness of this dataset makes a significant contribution to our understanding of infant hearing loss in South Africa.

Deaf signers and hearing aids: motivations, access, competency and service effectiveness.

OBJECTIVES: This study concerns culturally Deaf signers in the UK who use hearing aids and (i) explores motivations for hearing aid use (ii) identifies barriers and facilitators to accessing NHS hearing aid services, (iii) examines cultural competency of hearing aid clinics and (iv) identifies factors influencing effective adult hearing aid service provision. DESIGN: Online survey in British Sign Language and English that was informed by Deaf service users. STUDY SAMPLE: 75 Deaf adult BSL users who wear hearing aids and use NHS hearing aid clinics. RESULTS: No specific reason emerged as outstandingly important for hearing aid use; however, assisting with lipreading (57%) and listening to music (52%) were rated as very/extremely important. Access issues reported were contacting clinics, poor communication with staff and lack of Deaf awareness. To be an effective and culturally competent hearing aid clinic for Deaf signers, a good understanding of Deaf culture and language was most rated as important (87%). CONCLUSION: The study is the first that explores hearing aid use and experiences of accessing hearing aid clinics from Deaf signers' perspectives. Enhancements to clinical practice are required to consider culturally Deaf people's motivations for hearing aid use and make services more BSL-friendly.

Exploring the lived experiences of British Sign Language (BSL) users who access NHS adult hearing aid clinics: an interpretative phenomenological analysis.

OBJECTIVE: To explore the lived experiences of culturally Deaf British Sign Language (BSL) users who access adult hearing aid services. DESIGN: Semi-structured qualitative interviews were conducted in BSL by the Deaf researcher and analysed using an Interpretative Phenomenological Analysis (IPA) approach. STUDY SAMPLE: Eight Deaf BSL expert informants who were experienced users of NHS adult hearing aid clinics. RESULTS: Participants expressed dissatisfaction about audiology staff's lack of Deaf awareness and did not feel valued as Deaf signers. Participants' motivations for hearing aid use primarily concerned audibility rather than speech. Mismatch of perspectives on 'hearing' between audiologists and Deaf patients are discussed in the context of culturally sensitive services. Inadequate or uncertain linguistic access during appointments is considered in light of patient agency. CONCLUSION: This is the first study to explore culturally Deaf signers' specific experiences of adult hearing aid services in the UK and their experiences of hearing aids. There are numerous reasons why Deaf signers wear hearing aids, but access to spoken language is not a priority. Limited Deaf awareness and cultural competence in adult hearing aid services can result in patient frustration and disempowerment. Suggestions for improvement in the Deaf signing patient experience are offered.

Deaf Students' Translanguaging Practices in a Further Education College: Situating the Semiotic Repertoire in Social Interactions.

Further education (FE) colleges are the most usual postsecondary education destination for deaf young people in England. The role of college contexts in promoting deaf students' learning warrants further exploration given the gaps in educational attainment common to deaf students and the potential for FE context to provide new and/or enhanced linguistic resources in comparison with school. The main research question is: How do deaf students' translanguaging practices change according to the different contexts of interlocution in college? Translanguaging entails the flexible use of semiotic resources not bounded by named languages. This ethnographic study reports on five deaf college students' translanguaging practices. Findings are presented under three moments of translanguaging: (1) translanguaging expanded, or deaf students widening their repertoires to engage in communication; (2) translanguaging restricted, or deaf students accommodating to their communicative partners' needs; (3) translanguaging channeled, or the dominance of English countering the flexibility of translanguaging. It is argued that translanguaging should be promoted in whole classrooms. Otherwise, it will reinforce the dominance of hearing communication practices and hinder deaf students' multilingual/multimodal repertoires.

The Lived Experience and Legacy of Pragmatics for Deaf and Hard of Hearing Children.

In this article, we discuss deaf and hard of hearing (DHH) children's pragmatic difficulties and strengths from within the lived experiences of 5 hearing parents of DHH children and 5 DHH adults (one of whom is also a parent of a deaf child). We define lived experience as both a specific form of knowledge (first-hand stories from everyday life) and a unique way of knowing (reflecting and telling from insider perspectives). The parents and DHH adults involved coauthored the article alongside 2 experienced researcher-practitioners. Key themes include what pragmatic challenges feel like for a DHH person, why they arise, how they might result in longer-term consequences (such as implications for well-being) that can continue into adulthood, what might be pragmatic strengths in this population, and what might be done to ameliorate pragmatic difficulties. We end the article with reflections on the significance of individual parents and DHH adults in the coproduction and execution of research on this topic and make suggestions for future directions of inquiry.

Pragmatics Development in Deaf and Hard of Hearing Children: A Call to Action.

Although major strides have been made in supporting the linguistic development of deaf and hard of hearing (DHH) children, a high risk of pragmatic delay persists and often goes unrecognized. Pragmatic development (the growing sensitivity to one's communication partner when producing and comprehending language in context) is fundamental to children's social-cognitive development and to their well-being. We review the reasons why DHH children are vulnerable to pragmatic developmental challenges and the potential to create positive change. In this call to action, we then urge (1) medical providers to recognize the need to monitor for risk of pragmatic difficulty and to refer for timely intervention (beginning in infancy), (2) allied health professionals involved in supporting DHH children to incorporate development of pragmatic abilities into their work and to foster awareness among caregivers, and (3) the research community to deepen our understanding of pragmatics in DHH children with investigations that include pragmatics and with longitudinal studies that chart the paths to positive outcomes while respecting the diversity of this population. By working together, there is substantial potential to make rapid progress in lifting developmental outcomes for DHH children.

Complex care needs and devolution in Greater Manchester: a pilot study to explore social care innovation in newly integrated service arrangements for older people.

Objective The aim of this study was to describe emergent approaches to integrated care for older people with complex care needs and investigate the viability of measuring integrated care. Methods A case study approach was used. Sites were recruited following discussion with senior staff in health and social care agencies. Service arrangements were categorised using a framework developed by the researchers. To investigate joint working within the sites, the development model for integrated care was adapted and administered to the manager of each service. Data were collected in 2018. Results Six case study sites were recruited illustrating adult social care services partnerships in services for older people with home care providers, mental health and community nursing services. Most were established in 2018. Service arrangements were characterised by joint assessment and informal face-to-face discussions between staff. The development of an infrastructure to promote partnership working was evident between adult social care and each of the other services and most developed with home care providers. There was little evidence of a sequential approach to the development of integrated working practices. Conclusion Components of partnerships promoting integrated care have been highlighted and understanding of the complexity of measuring integrated care enhanced. Means of information sharing and work force development require further consideration. What is known about the topic? The devolution of health and social care arrangements in Greater Manchester has aroused considerable interest in much wider arenas. Necessarily much of the focus in available material has been upon strategic development, analysis of broader trends and mechanisms and a concern with changes in the healthcare system. What does this paper add? The findings from this study will enable emerging approaches to be described and codified, and permit the specific social care contribution to the new arrangements to be discerned. The findings are relevant beyond the immediate context of Greater Manchester to wider integrated care. The evidence can be used by commissioners and services, providing a sound basis for further work as service systems develop. What are the implications for practitioners? This research is important because it is one of the first pieces of work to examine the new integrated care arrangements in Greater Manchester. By providing guidance to promote evidence-based practice, this study contributes to service development in Greater Manchester and the achievement of the broad national service objectives of improving user and carer experiences and ensuring value for money.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

How do we know what we don't know? Exploring Deaf people's experiences of supporting their Deaf family member living with dementia.

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.

Parental Conceptualizations of Autism and Deafness in British Deaf Children.

The co-occurrence of childhood deafness and autism raises complex challenges for diagnosis and family support. In this article, we explore with hearing and Deaf parents their observations of the interaction between deafness and autism and identify how the intersections of deafness and autism are conceptualized in everyday life. Eight parents participated (two of whom were Deaf BSL users) in semi-structured interviews in either BSL or spoken English. Data analysis was underpinned by a phenomenological approach in the hermeneutic tradition. Findings are discussed in terms of parents' perceptions of the relevance of deafness to their understanding of autism for their particular child, the effects of autism on sign and spoken language development and the relationship between deafness and autism in terms of their own and others' attributions of their children's characteristics. The significance of the findings for parental contributions' to diagnostic assessment and the tailoring of family support are considered.

'The world is full of magic things, patiently waiting for our senses to grow sharper' (WB Yeats): enhancing resilience among deaf young people in South Africa through photography and filmmaking.

This article concerns deaf children and young people living in South Africa who are South African Sign Language users and who participated in an interdisciplinary research project using the medium of teaching film and photography with the goal of enhancing resilience. Specifically, this paper explores three questions that emerged from the deaf young people's experience and involvement with the project: (i) What is disclosed about deaf young people's worldmaking through the filmic and photographic modality? (ii) What specific impacts do deaf young people's ontologically visual habitations of the world have on the production of their film/photographic works? (iii) How does deaf young people's visual, embodied praxis through film and photography enable resilience? The presentation of findings and related theoretical discussion is organised around three key themes: (i) 'writing' into reality through photographic practice, (ii) filmmaking as embodied emotional praxis and (iii) enhancing resilience through visual methodologies. The discussion is interspersed with examples of the young people's own work.

Authentic public and patient involvement with Deaf sign language users: It is not just about language access.

This article concerns Public and Patient Involvement practice with Deaf people who are sign language users. It draws on the experience of public and patient involvement in a project concerning Deaf people's lived experience of dementia and focusses on: (i) creating the conditions of trust in circumstances of unrecorded knowledge; (ii) being a community insider as a necessary but not sufficient condition without public and patient involvement and (iii) community consultation as influencing positive public and patient involvement practice. It sets out a series of recommendations for authentic public and patient involvement practice with Deaf sign language users linked to each of these themes before considering more generally barriers to Deaf people's involvement in public and patient involvement in health and social care research.

The validation of the Short Warwick-Edinburgh Mental Well-Being Scale (SWEMWBS) with deaf British sign language users in the UK.

BACKGROUND: There 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. METHODS: The 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. RESULTS: The 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. CONCLUSIONS: The 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.