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.

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.

The HI HOPES data set of deaf children under the age of 6 in South Africa: maternal suspicion, age of identification and newborn hearing screening.

BACKGROUND: Identification of deafness before 3 months of age substantially improves the socio-linguistic and cognitive development of deaf children. Existing studies demonstrating the feasibility of newborn hearing screening in South Africa have used small samples unrepresentative of general population characteristics. This study establishes the characteristics of the largest data set of deaf infants and their families in South Africa on which there is baseline and longitudinal data (n = 532); explores its representativeness in terms of socio-demographic features and reports on access to and quality of newborn hearing screening within the sample. It examines specifically the relationship between age of maternal suspicion of childhood deafness and age of identification of deafness by cohort characteristics. METHODS: Secondary analysis, using descriptive and inferential statistics, of a pre-existing longitudinal data set (n = 532) of deaf infants under 6 years of age, and their families, collected as routine monitoring of the HI HOPES (HH) early intervention programme. RESULTS: The HH cohort is representative in terms of racial profile and private/public health care use but displays slightly higher level of maternal education and slightly lower socio-economic status than national comparators. 102 out of 532 infants had undergone newborn hearing screening, resulting in 29 true positives, 15 of whom would have met the criteria for targeted screening. Later onset deafness does not account for the 73 false negatives. The median age of maternal suspicion (n = 247) of infant deafness was 18 months; the median age of identification of 28 months. Age of identification was unrelated to private/public health care status. The median delay between age of suspicion and age of identification was significantly longer in the public sector (7 m; IQR 0-15 m) compared to the private sector (2 m; IQR 0-8.5 m) (p = 0.035). Age of suspicion was unrelated to level of maternal education. Earlier age of suspicion did not predict earlier identification. CONCLUSION: Targeted screening as timely response to maternal suspicion offers a viable means to reduce substantially the age of identification of deafness in South Africa until implementation of newborn hearing screening on a population-wide basis can be justified.

Effectiveness of enhanced communication therapy in the first four months after stroke for aphasia and dysarthria: a randomised controlled trial.

OBJECTIVE: To assess the effectiveness of enhanced communication therapy in the first four months after stroke compared with an attention control (unstructured social contact). DESIGN: Externally randomised, pragmatic, parallel, superiority trial with blinded outcome assessment. SETTING: Twelve UK hospital and community stroke services. PARTICIPANTS: 170 adults (mean age 70 years) randomised within two weeks of admission to hospital with stroke (December 2006 to January 2010) whom speech and language therapists deemed eligible, and 135 carers. INTERVENTIONS: Enhanced, agreed best practice, communication therapy specific to aphasia or dysarthria, offered by speech and language therapists according to participants' needs for up to four months, with continuity from hospital to community. Comparison was with similarly resourced social contact (without communication therapy) from employed visitors. OUTCOME MEASURES: Primary outcome was blinded, functional communicative ability at six months on the Therapy Outcome Measure (TOM) activity subscale. Secondary outcomes (unblinded, six months): participants' perceptions on the Communication Outcomes After Stroke scale (COAST); carers' perceptions of participants from part of the Carer COAST; carers' wellbeing on Carers of Older People in Europe Index and quality of life items from Carer COAST; and serious adverse events. RESULTS: Therapist and visitor contact both had good uptake from service users. An average 22 contacts (intervention or control) over 13 weeks were accepted by users. Impairment focused therapy was the approach most often used by the speech and language therapists. Visitors most often provided general conversation. In total, 81/85 of the intervention group and 72/85 of the control group completed the primary outcome measure. Both groups improved on the TOM activity subscale. The estimated six months group difference was not statistically significant, with 0.25 (95% CI -0.19 to 0.69) points in favour of therapy. Sensitivity analyses that adjusted for chance baseline imbalance further reduced this difference. Per protocol analyses rejected a possible dilution of treatment effect from controls declining their allocation and receiving usual care. There was no added benefit of therapy on secondary outcome measures, subgroup analyses (such as aphasia), or serious adverse events, although the latter were less common after intervention (odds ratio 0.42 (95% CI 0.16 to 1.1)). CONCLUSIONS: Communication therapy had no added benefit beyond that from everyday communication in the first four months after stroke. Future research should evaluate reorganised services that support functional communication practice early in the stroke pathway. This project was funded by the NIHR Health Technology Assessment programme (project No 02/11/04) and is published in full in Health Technology Assessment 2012;16(26):1-160. TRIAL REGISTRATION: ISRCTN78617680.

The meaning of cancer: implications for family finances and consequent impact on lifestyle, activities, roles and relationships.

OBJECTIVE: This study explores the impact that cancer-related financial hardship/worries can have on family life. METHODS: Forty patients (19 male and 21 female) and 17 carers participated in a qualitative study, which drew on certain elements of grounded theory methods. Participants were 18 years or older and were accessed through a regional cancer centre, an acute National Health Service trust, a support group and the Macmillan Benefits Helpline. Interviews were transcribed verbatim and analysed thematically with the aid of nvivo 7 (QSR International, Cambridge, MA, USA). RESULTS: Many participants said that prior to experiencing cancer, they had never thought about its effects on finances. The early part of the cancer journey was characterised by a need to be positive about the future, limited discussion about money within families and a lack of action in relation to finances. Many participants, especially those of working age, described cancer-related financial worries and difficulties that had impacted on family lifestyle, roles and relationships. Consequences included house repossession, bankruptcy, loss of independence and relationship breakdown. CONCLUSIONS: Health and social care professionals have a role in prompting people affected by cancer to take stock of their finances early in the cancer trajectory, in order to avert knock-on effects. An approach that combines hope with proactivity is needed. More work into the long-term effects of financial difficulties/worries and specific financial issues that affect people from Black and minority ethnic backgrounds is needed.

Disabled children (0-3 years) and integrated services--the impact of Early Support.

Early Support (ES) is the flagship government programme aimed at improving multi-agency working with, and supporting enhanced outcomes for, children with a disability 0-3 years and their families. This paper draws on results from the recently completed Department for Education and Skills commissioned national evaluation of ES involving 46 pathfinder projects throughout England. Data were collected by survey at two points in time (9 months apart), by focus groups with service providers and parents, and through secondary data analyses, including exploratory economic evaluation. This paper outlines some of the key findings pertaining to the relationship between integrated children's services and the impact of ES. As such, we address three concerns: what the evidence from ES can tell us about the relationships between universal and targeted provision within integrated children's service structures, the relationship between specific short-term initiatives and their longer-term sustainability within integrated children's services structures and the potential costs and benefits of ES looking forward to its implementation on a national basis within an integrated children's services environment. Although focused primarily on children with a disability in the early years, implications will be drawn for the implementation of Lead Professional Guidance and the Common Assessment Framework more generically.

Readiness of paediatric audiology services for newborn hearing screening: findings and implications from the programme in England.

As well as evaluating the newborn hearing screen itself, the government-funded evaluation of the implementation of a Newborn Hearing Screening Programme (NHSP) in England is assessing the impact of the screen on follow-up services. In the UK context, these are principally paediatric audiology, education, and social services. This article presents results from a mixed method research study involving paediatric audiology services specifically. Results demonstrate significant variety in current practice with regard to routine tests and procedures, considerable variability in number of current referrals and time allocated to caseloads, and considerable variability in expectations of how the numbers will change following newborn screening implementation. The challenges of and opportunities afforded by NHSP which were identified by respondents, highlight the urgent need for further training. The study has implications for paediatric audiology services that are yet to start NHSP in the UK, as well as for services and professionals in other countries.