Is there a correlation between sensory impairments and social isolation in middle-aged and older Chinese population? Cross-sectional and longitudinal evidence from a nationally representative survey.

Purpose: The aim of this study is to investigate the cross-sectional and longitudinal associations between sensory impairments (SIs) including single vision impairment (SVI), single hearing impairment (SHI), and dual sensory impairments (DSI) with social isolation in the middle-aged and older Chinese population. Methods: Data were obtained from the China Health and Retirement Longitudinal Survey (CHARLS). In total, 11,674 Chinese older adults aged over 45 were included at baseline 2011, and 6,859 participants who accomplished all four interviews from 2011 to 2018 were adapted for longitudinal analyses. Sensory status and social isolation measurements including social disconnectedness and self-perceived loneliness were collected. Assessment of social disconnectedness included the number of types of social activities in which they participated and the frequency of such participation. Loneliness referred to the subjective perception of loneliness. Other covariates included socio-demographic characteristics, medical conditions, and lifestyle-related factors. The impacts of baseline sensory status on social disconnectedness and loneliness were assessed using univariate and multivariate generalized linear models. A generalized linear model with generalized estimation equations (GEE) was used to assess the association between time-varying sensory statuses with social disconnectedness or loneliness over 8 years after being adjusted with multi-confounding factors. Results: Participants with SIs had significantly higher levels of social disconnectedness and self-perceived loneliness, compared to those who were free of SI. All kinds of SIs were significantly associated with loneliness according to both cross-sectional and longitudinal data. The correlations between DSI and social disconnectedness or loneliness at baseline and over 8 years were also noticed. SHI was found to be significantly associated with both frequency and types of social activities according to cross-sectional data and with the frequency of social activity participation in longitudinal analysis. SVI was only associated with the types of social activities at baseline (all p-values < 0.05). Conclusion: Sensory impairments, especially dual sensory impairments, have explicitly detrimental effects on social isolation among the older Chinese population. Over time, single hearing impairment specifically jeopardizes their frequency rather than types of social activities participation.

Clinical genetics, practice, and research of deafblindness: From uncollected experiences to the national registry in Japan.

Deafblindness is a condition of combined vision and hearing loss that is extremely rare in children and young adults, as well as being a highly heterogeneous condition, with over 70 specific etiologies. Due to these features, sporadic clinical experiences have not been collated, which has hampered medical progress. Genetics plays a major role in the pathogenesis of deafblindness in children and young adults, with more than 50 hereditary syndromes and disorders associated with the condition, including CHARGE, Usher, Down, Stickler, and Dandy-Walker syndromes, which are the most common. Clinical diagnosis of deafblindness is often difficult, and a significant proportion of patients are undiagnosed. No curative therapy is currently available for the majority of patients with hereditary deafblindness; however, experimental studies using animal models have shown promising results by targeting specific genes that cause vision or hearing loss. In Japan, the Rare Disease Data Registry of Japan (RADDAR-J) has been established as a national registry of rare and intractable diseases. Diseases of deafblindness have been elected as a disease category in RADDAR-J. Currently, clinical and genomic data are being collected and analyzed using this system, with the aim of generating an overview of deafblindness to improve medical practice.

Experiencias de las personas sordociegas sobre la atención sanitaria / Experiences of deafblind people about health care

La sordoceguera es una discapacidad, resultado de la combinación de las deficiencias visual y auditiva, manifestándose en diferentes grados y provocando problemas comunicativos únicos. Las personas sordociegas presentan necesidades especiales debidas a la dificultad para percibir, conocer y desenvolverse, requiriendo servicios especializados, personal formado y métodos especiales de comunicación. Objetivo: El objetivo principal de este estudio es explorar las experiencias vividas por las personas sordociegas del Centro Santa Ángela de la Cruz, perteneciente a la Asociación de Padres de Sordociegos de España, en relación con la atención sanitaria recibida a lo largo de su vida. Método: Estudio cualitativo fenomenológico, mediante entrevistas semiestructuradas a personas sordociegas del Centro Santa Ángela de la Cruz de Salteras (Sevilla). Este trabajo se llevó a cabo en el año 2015 con ayuda de intérpretes en lengua de signos española. Los temas tratados hacen referencia a las infraestructuras, los recursos humanos, el tiempo de espera y la atención sanitaria. Resultados: Se obtuvieron discursos coincidentes en señalar como principales dificultades las barreras arquitectónicas y formativas en el ámbito sanitario y destacan mejor atención si los profesionales manejan lengua de signos. Conclusiones: Entre las principales barreras en la atención a las personas sordociegas se destaca la falta de conocimiento de los profesionales sanitarios sobre todos los aspectos que engloban a la sordoceguera, en especial la lengua de signos, además de la escasez de señalizaciones e información. Se demandan alternativas para disminuir los tiempos de espera y favorecer la comunicación directa con los profesionales de la salud (AU)

Deafblindness is a disability resulting from the combination of visual and auditory sensory impairments, which can manifest in different levels causing special communication problems. Deafblind people have special needs that derive from difficulties in sensing, understanding, attention and a lack of the skills required to function effectively in society. Deafblindness requires specialized services, personnel specifically trained in its care and special methods for communication. Objective: The main objective of this study is to explore the experiences of deafblind people in relation to health care throughout their lives. This study was developed at the St. Angela de la Cruz Centre, belonging to the Association of Parents of Deafblind People in Spain. Method: Phenomenological qualitative study, through semi-structured interviews with deafblind people at the St. Ángela de la Cruz Centre, Salteras (Seville), carried out in 2015, with the help of interpreters in Spanish sign language. Topics covered in the interviews refer to facilities, human resources, time waiting and health care. Results: Coinciding statements were obtained, where the participants point out architectural and educational barriers in health care and stand out better if the professionals know sign language. Conclusions: It can be highlighted that healthcare professionals lack knowledge of all aspects of deafblindness, sign language in particular, and there is a shortage of signs and information for the deafblind. Moreover, alternatives are required to reduce waiting times and improve direct communication with health professionals (AU)

National Provisions for Certification and Professional Preparation in Low-Incidence Sensory Disabilities: A 50-State Study.

A multimethod study examined the 50 U.S. states' preparation and licensure practices regarding students with low-incidence sensory disabilities (LISD). The researchers used document review and structured interviews with state education agency representatives. It was found that institutions of higher education (IHEs) in 38 states offer at least one LISD preparation program; 12 states offer no programs at all. Further, program intensity, a measure of state capacity to serve students with LISD, varies from 0 to about 3 programs per million state residents. States also differ by the regime used to qualify teaching candidates, using either licensure or endorsement. Nationally, being an LISD licensure regime is, all else being equal, negatively correlated with number of LISD programs. The findings suggest that many states lack the capacity to supply enough trained professionals to serve students with LISD. Recommendations are framed for states, national organizations, and IHEs.

Dual sensory impairment in special schools in South-Eastern Nigeria.

In a cross-sectional study to determine the magnitude of dual sensory impairment (DSI-combined hearing and vision loss) in children in single-disability special education schools, children in schools for the blind and schools for the deaf in four states in South-East Nigeria were examined by an ophthalmologist and otorhinolaryngologist to determine the level of their disability and to identify other disabilities if any. Participants were all students with childhood blindness or childhood deafness. The magnitude and causes of DSI and the burden of undetected DSI were the main outcome measures. A total of 273 students were examined. About 7% of these students had DSI out of which over 60% (12/19) was previously undetected. There was more DSI in the blind schools than in the deaf schools (p=0.003). There is a large burden of undetected DSI in children in special schools in Nigeria. There is a need to create awareness of this problem and advocate appropriate screening, rehabilitative and educational strategies for children who have it.

Deafblindness: a review of the literature.

BACKGROUND: Deafblindness or dual sensory loss is a rare condition among young people, but more frequent among older people. Deafblindness is a heterogeneous condition that varies with regard to time of onset and degree of vision and hearing impairment, as well as communication mode, medical aetiology, and number and severity of co-morbidity. METHOD: We conducted a comprehensive review of public health issues related to deafblindness. RESULTS: Deafblindness often lead to barriers in language and communication, access to information and social interaction, which can lead to a number of health-related difficulties. Some of the reported consequences are a higher risk of depression, cognitive decline, developmental disorder in children and psychological distress. CONCLUSIONS: Deafblindness is associated with a number of health-related issues and more knowledge is needed about the impact of dual sensory loss to be able to offer the best support.

Aplicación de la Ley de Dependencia en los pacientes con baja visión / Dependent Care Act application in low vision patients

Introducción. La Ley de Dependencia surge en España como un reto de la política social, cuyo objetivo es atender las necesidades de las personas que requieren apoyo para realizar las actividades esenciales de la vida diaria. El objetivo de este estudio es conocer las características de la población que se encuentra en situación de dependencia por el padecimiento de una afección oftalmológica. Material y métodos. Estudio descriptivo transversal a partir de la entrevista personal y revisión de la historia clínica de un grupo de pacientes atendidos en Consultas Externas del Servicio de Oftalmología del Hospital Clínico Universitario de Valencia, partiendo de los datos vertidos por un cuestionario adaptado a partir de la Encuesta de Discapacidades, Deficiencias y Estados de Salud realizada por el Instituto Nacional de Estadística. Resultados. La media de edad de los pacientes es de 65,8 años, mayoritariamente mujeres y laboralmente activos, con una edad media al inicio de la discapacidad de 59,1 años. Predominó la afección corneal como diagnóstico y la enfermedad común como etiología. La media de la agudeza visual fue de 0,4. Más de la mitad de los pacientes presentaron una situación clínica que podría empeorar con el tiempo. La mayor parte de los pacientes no había solicitado ayuda alguna. Conclusiones. Los pacientes estudiados siguen el mismo perfil poblacional que los estudios precedentes sobre prevalencia de la dependencia. Sería necesario adoptar medidas para mejorar la información que reciben los pacientes sobre sus derechos en este marco, facilitar los trámites burocráticos para la percepción de ayudas, disminuir el tiempo de demora en la valoración de la situación de dependencia y reforzar los dispositivos asistenciales para las personas dependientes(AU)

Introduction. The recent Promotion of Personal Autonomy and Care for Dependent Persons Act has opened up the opportunity to complete the social welfare system generated for the dependent and, perhaps only partly, to change the system of social networks that has meant, until now, their only support. The main goal of the present study is to know the characteristics of dependent people with low vision, the level of dependency and the personal, family and social impact of this situation. Materials and methods. Descriptive cross-sectional study after personal interview and clinical records review of a group of patients belonging to the Ophthalmology Service of the Hospital Clínico Universitario of Valencia. It is based on the results of an adapted questionnaire from the Disability, Deficiency and Health Survey conducted by the Spanish National Statistics Institute. Results. The mean age of the patients was 65.8 years, mostly women and occupied, with a mean age of 59.1 years at the beginning of the disability. The prevailing diagnose was corneal pathology and common disease as etiology. The mean visual acuity was 0.4. Clinical status of over 50% of the patients could worsen within time. Most of the patients had not applied for any assistance. Conclusion. The studied patients follow the same demographic profile as shown on previous studies over dependency. Facilities for paperwork issues, information, evaluation and assistance should be implemented in order to improve the attention to dependent people(AU)

Sensory and demographic characteristics of deafblindness rehabilitation clients in Montréal, Canada.

PURPOSE: Demographic changes are increasing the number of older adults with combined age-related vision and hearing loss, while medical advances increase the survival probability of children with congenital dual (or multiple) impairments due to pre-maturity or rare hereditary diseases. Rehabilitation services for these populations are highly in demand since traditional uni-sensory rehabilitation approaches using the other sense to compensate are not always utilizable. Very little is currently known about the client population characteristics with dual sensory impairment. The present study provides information about demographic and sensory variables of persons in the Montreal region that were receiving rehabilitation for dual impairment in December 2010. This information can inform researchers, clinicians, educators, as well as administrators about potential research and service delivery priorities. METHOD: A chart review of all client files across the three rehabilitation agencies that offer integrated dual sensory rehabilitation services in Montreal provided data on visual acuity, visual field, hearing detection thresholds, and demographic variables. RESULTS: The 209 males and 355 females ranged in age from 4months to 105years (M=71.9, S.D.=24.6), indicating a prevalence estimate for dual sensory impairment at 15/100000. Only 5.7% were under 18years of age, while 69.1% were over the age of 65years, with 43.1% over the age of 85years. The diagnostic combination that accounted for 31% of the entire sample was age-related macular degeneration with presbycusis. Their visual and auditory measures indicated that older adults were likely to fall into moderate to severe levels of impairment on both measures. Individuals with Usher Syndrome comprised 20.9% (n=118) of the sample. CONCLUSION: The age distribution in this sample of persons with dual sensory impairment indicates that service delivery planning will need to strongly consider the growing presence of older adults as the baby-boomers approach retirement age. The distribution of their visual and auditory limits indicates that the large majority of this client group has residual vision and hearing that can be maximized in the rehabilitation process in order to restore functional abilities and social participation. Future research in this area should identify the specific priorities in both rehabilitation and research in individuals affected with combined vision and hearing loss.

Dual sensory impairment in older age.

OBJECTIVE: Hearing and visual impairments are commonly viewed separately in research and service provision, but they often occur together as dual sensory impairment or DSI in older populations. This article examines the frequency and effects of DSI in older age and notes limitations in the evidence. METHODS: Search of electronic databases of published papers. RESULTS: DSI diminishes communication and well-being and can cause social isolation, depression, reduced independence, mortality, and cognitive impairment. DISCUSSION: Although intuitively DSI may be expected to have additional impacts over single sensory impairment, research findings are inconclusive. Services and supports required by people with DSI are simply a combination of those required by people with single vision and hearing loss, taking account of the unique communication difficulties posed by DSI.

Mental and behavioral disorders among people with congenital deafblindness.

The population of people with congenital deafblindness faces challenges concerning communication and mobility. Due to the significance of the sensory loss it is difficult to diagnose mental and behavioral disorders. This article investigates the prevalence of mental and behavioral disorders among 95 congenitally deafblind adults. Seventy-four percent were found to have a mental and/or behavioral diagnose. Mental retardation was found among 34%, psychosis among 13%. Mental and behavioral disorders, especially with symptoms of psychosis and mental retardation, are common among people with congenital deafblindness. Clinical experience is needed, as well as cross-disciplinary cooperation and specialized diagnostic methods together with a observation and intervention period in order to be able to assess and differentiate mental and behavioral symptoms from sensory deprivation in people with congenital deafblindness.

Prevalence and aetiology of congenitally deafblind people in Denmark.

A study of prevalence and aetiology was performed on 63 children and 127 adults in Denmark with congenital deafblindness. Using a Scandinavian definition of deafblindness, the prevalence of congenital deafblindness was found to be 1:29 000. Thirty-five different aetiological causes of deafblindness were found. Causes of congenital deafblindness were different among adults compared to causes among children. Rubella syndrome (28%, n = 36) and Down syndrome (8%. n = 10) were the largest groups among people above 18 years of age. Among children CHARGE syndrome (16%, n = 13) was the largest group. Ethnicity was also evaluated. Among children 72% were Danish, but among the adults 98% were Danish. Implications of difference in aetiology and ethnicity are discussed in relation to the Scandinavian traditions of clinical practice and identification of congenital deafblindness.

Failure to detect deaf-blindness in a population of people with intellectual disability.

BACKGROUND: Early identification of deaf-blindness is essential to ensure appropriate management. Previous studies indicate that deaf-blindness is often missed. We aim to discover the extent to which deaf-blindness in people with intellectual disability (ID) is undiagnosed. METHOD: A survey was made of the 253 residents of an institute offering residential and occupational facilities for people with IDs. Data are included for the 224 individuals who were able to complete both auditory and visual assessments. Otoacoustic emissions were used to screen for hearing impairment; those who did not pass were assessed by behavioural audiometry. Visual acuity was assessed with one of the following: EH-Optotypes, LH-Optotypes, Teller Acuity Cards, Cardiff Acuity Cards or the Stycar Ball Vision Test. RESULTS: Prior to the study hearing impairment had been diagnosed in 12.5% of the 224 subjects, and visual impairment in 17%. Upon completion of the study these figures rose to 46% and 38.4% respectively. Deaf-blindness was diagnosed in 3.6% of the subjects before, and in 21.4% after, the study. Most (87.5%) of the deaf-blind individuals had profound ID. CONCLUSION: Deaf-blindness is most often not identified either by standard medical screening or by care staff. Individuals with this disability, however, require provision of special kinds of care. Four categories of deaf-blindness are proposed, according to the severity of sensory impairment in each modality. The tests used in this study are non-invasive and are appropriate for individuals with ID and children. Early and periodic screening for visual and hearing impairment in individuals with ID is recommended.