Exploring spirituality and quality of life in individuals who are deaf and have intellectual disabilities.

PURPOSE: While positive contributions of religion and spirituality (R/S) to quality of life (QOL) are confirmed by a growing body of evidence, only limited research has involved people with intellectual disabilities and so far, no studies included prelingually deaf individuals with intellectual disabilities. This study explores the role of R/S in people with intellectual disabilities and deafness living in three therapeutic living communities specifically adapted to their needs. METHODS: Forty-one individuals (mean age: 46.93 years, 43.9% female) with prelingual deafness and mild to moderate intellectual disability participated in structured sign language interviews adapted to their cognitive-developmental level, regarding their QOL, individual spirituality and participation in spiritual practices in the community. Participants' QOL was assessed with an established short measure for QOL (EUROHIS-QOL) adapted to easy-to-understand sign language. With 21 participants, qualitative interviews were conducted. In addition, proxy ratings from caregivers were obtained. RESULTS: The participants' ratings of their individual spirituality (r = 0.334; p = 0.03) and spiritual practices-in-community (r = 0.514; p = 0.00) correlated positively with their self-reported QOL. Qualitative findings illustrate the importance of R/S and give insights into R/S concepts and practices. CONCLUSIONS: Personal spirituality and participating in spiritual practices are positively related to self-reported quality of life in deaf individuals with intellectual disability (ID). As a consequence, access to spiritual and religious services should be included in comprehensive programs and society at large.

Is it feasible to assess self-reported quality of life in individuals who are deaf and have intellectual disabilities?

PURPOSE: There is consensus that Quality of Life (QOL) should be obtained through self-reports from people with intellectual Disability (ID). Thus far, there have been no attempts to collect self-reported QOL from people who are deaf and have ID. METHODS: Based on an established short measure for QOL (EUROHIS-QOL), an adapted easy-to-understand sign language interview was developed and applied in a population (n = 61) with severe-to-profound hearing loss and mild-to-profound ID. Self-reports were conducted at two time points (t1 and t2), 6 months apart. The Stark QOL, an established picture-based questionnaire, was also obtained at t2 and three Proxy ratings of QOL (from caregivers) were conducted for each participant at t1. RESULTS: Self-reported QOL was successfully administered at both time points for 44 individuals with mild and moderate ID (IQ reference age between 3.3 and 11.8 years). The self-reports showed sufficient test-retest reliability and significant correlations with the Stark QOL. As anticipated, self-reported QOL was higher than proxy-reported QOL. Test-retest reliability and internal consistency were good for self-reported QOL. CONCLUSION: Reliable and valid self-reports of QOL can be obtained from deaf adults with mild-moderate ID using standard inventories adapted to the linguistic and cognitive level of these individuals.

Deaf Residents With Intellectual Disabilities During the First Covid-19 Associated Lockdown.

Two indicators for stress (mood and aggressive behavior) were evaluated in order to investigate the effect of the restrictions taken against the spread of the coronavirus on people who are deaf and hard of hearing (DHH) and have intellectual disabilities (ID). In three therapeutic living communities, specifically designed for the visual communication needs of people who are DHH and have ID, the mood of the residents is routinely assessed by staff members and every aggressive incident is recorded with the Staff Observation of Aggressions Scale-Revised (SOAS-R). For the 38 residents who were present 8 weeks before the first lockdown (t1) and the following 8 weeks (t2), mood ratings and ratings of aggressive behavior were compared between the two time periods. In contrast to our hypothesis the mood ratings of the residents had a slight significant improvement, whereas the incidents and severity of aggressive behavior did not change significantly. These results suggest that with proper communicative support, individuals who are DHH and have ID can cope effectively with significant restrictions imposed by a pandemic-caused lockdown.

The Impact of Family Environment on Language Development of Children With Cochlear Implants: A Systematic Review and Meta-Analysis.

OBJECTIVES: The authors conducted a systematic review of the literature and meta-analyses to assess the influence of family environment on language development in children with cochlear implants. DESIGN: The Pubmed, excerpta medica dataBASE (EMBASE), Education Research Information Center, cumulative index to nursing and allied health literature (CINAHL), Healthcare Literature Information Network, PubPsych, and Social SciSearch databases were searched. The search strategy included terms describing family environment, child characteristics, and language development. Studies were included that (a) assessed distal family variables (such as parental income level, parental education, family size, and parental stress) with child language outcomes, and/or more proximal correlates that directly affect the child (such as family engagement and participation in intervention, parenting style, and more specifically, the quantity and quality of parental linguistic input) on child language; (b) included children implanted before the age of 5 years; (c) measured child language before the age of 21 years with standardized instruments; (d) were published between 1995 and February 2018; and (e) were published as peer-reviewed articles. The methodological quality was assessed with an adaptation of a previously validated checklist. Meta-analyses were conducted assuming a random-effects model. RESULTS: A total of 22 study populations reported in 27 publications were included. Methodological quality was highly variable. Ten studies had a longitudinal design. Three meta-analyses on the correlations between family variables and child language development could be performed. A strong effect of the quality and quantity of parental linguistic input in the first 4½ years postimplantation on the child's language was found, r = 0.564, p ≤ 0.001, 95% confidence interval (CI) = 0.449 to 0.660, accounting for 31.7% of the variance in child language outcomes. Results demonstrated high homogeneity, Q(3) = 1.823, p = 0.61, I = 0. Higher-level facilitative language techniques, such as parental expansions of the child's utterances or the use of open-ended questions, predicted child language skills. Risk of publication bias was not detected. The results on the impact of family involvement/participation in intervention on child language development were more heterogeneous. The meta-analysis included mainly cross-sectional studies and identified low to moderate benefits, r = 0.380, p ≤ 0.052, 95% CI = -0.004 to 0.667, that almost attained significance level. Socioeconomic status, mainly operationalized by parental level of education, showed a positive correlation with child language development in most studies. The meta-analysis confirmed an overall low and nonsignificant average correlation coefficient, r = 0.117, p = 0.262, 95% CI = -0.087 to 0.312. A limitation of the study was the lack of some potentially relevant variables, such as multilingualism or family screen time. CONCLUSIONS: These data support the hypothesis that parental linguistic input during the first years after cochlear implantation strongly predicts later child language outcomes. Effects of parental involvement in intervention and parental education are comparatively weaker and more heterogeneous. These findings underscore the need for early-intervention programs for children with cochlear implants focusing on providing support to parents for them to increase their children's exposure to high-quality conversation.

Development of Deaf Adults with Intellectual Disability in a Therapeutic Living Community.

People with intellectual disabilities who are deaf face obstacles participating in social environments that do not take into account their need for accessible visual communication. In the present case series, we describe the development of the adaptive skills profiles of eight participants in a fully inclusive therapeutic living community, designed specifically for people with developmental disabilities who are deaf and focused on supporting communication, social relationships, conflict resolution, and work satisfaction. Adaptive skills ratings collected at enrollment and twelve years later suggest increases in social awareness and community living, whereas personal care and homemaking showed relatively little change.

Health Care Access Among Deaf People.

Access to health care without barriers is a clearly defined right of people with disabilities as stated by the UN Convention on the Rights of People with Disabilities. The present study reviews literature from 2000 to 2015 on access to health care for deaf people and reveals significant challenges in communication with health providers and gaps in global health knowledge for deaf people including those with even higher risk of marginalization. Examples of approaches to improve access to health care, such as providing powerful and visually accessible communication through the use of sign language, the implementation of important communication technologies, and cultural awareness trainings for health professionals are discussed. Programs that raise health knowledge in Deaf communities and models of primary health care centers for deaf people are also presented. Published documents can empower deaf people to realize their right to enjoy the highest attainable standard of health.

Motor performance and correlates of mental health in children who are deaf or hard of hearing.

AIM: This cross-sectional study investigates the relationship between motor performance and mental health in a representative population of children with hearing impairment. METHOD: Ninety-three pupils (45 males, 48 females) aged 6 years to 16 years (mean 11 y 3 mo, SD 2 y 9 mo) with hearing impairment of at least 40 dB and a Nonverbal IQ greater than 70 were assessed for motor performance with the Zürich Neuromotor Assessment (ZNA) and for mental health with the parent version of the Strengths and Difficulties Questionnaire (SDQ). RESULTS: Children with hearing impairment had lower motor performance scores in all four ZNA subscales compared with ZNA norms (z-scores -1.42 to -2.67). After controlling for Nonverbal IQ, ZNA pure motor performance correlated negatively with the SDQ total difficulties score. Pure motor, pegboard, and dynamic balance subscales correlated negatively with peer-relationship problems. Dynamic balance correlated negatively with emotional problems. Performance in pure motor and dynamic balance skills correlated negatively with age. Except for static balance, no correlation was found between motor performance and the degree of hearing impairment. INTERPRETATION: Results confirm that a high percentage of children with hearing impairment have poor motor performance. These problems are associated with difficulties in social relationships. Early recognition of these problems may lead to interventions to assist children with hearing impairment with their peer relationships.

[Deaf patients in psychiatry]. / Gehörlose Patienten im psychiatrischen Kontext.

Prelingual deafness has multiple and far reaching consequences for the development of language, cognition and the psychosocial dimension. Almost one of a thousand of the population is affected. Barriers in communication limit access to knowledge and participation in society. The use of sign language connects deaf people socio-culturally. This review shows discrepancies between high prevalence rates of mental health disorders with complex psychiatric challenges and barriers to mental health care. The UN convention on the rights of persons with disabilities obliges to counteract these discrepancies. Services with specialised signing professionals and the use of interpreters can improve access to mental health care.

Research gaps in the neurodevelopmental assessment of children with complex congenital heart defects: a scoping review.

Background: Children with congenital heart defects (CHD) are at risk for a range of developmental disabilities that challenge cognition, executive functioning, self-regulation, communication, social-emotional functioning, and motor skills. Ongoing developmental surveillance is therefore key to maximizing neurodevelopmental outcome opportunities. It is crucial that the measures used cover the spectrum of neurodevelopmental domains relevant to capturing possible predictors and malleable factors of child development. Objectives: This work aimed to synthesize the literature on neurodevelopmental measures and the corresponding developmental domains assessed in children aged 1-8 years with complex CHD. Methods: PubMed was searched for terms relating to psycho-social, cognitive and linguistic-communicative outcomes in children with CHD. 1,380 papers with a focus on complex CHD that reported neurodevelopmental assessments were identified; ultimately, data from 78 articles that used standardized neurodevelopmental assessment tools were extracted. Results: Thirty-nine (50%) of these excluded children with syndromes, and 9 (12%) excluded children with disorders of intellectual development. 10% of the studies were longitudinal. The neurodevelopmental domains addressed by the methods used were: 53% cognition, 16% psychosocial functioning, 18% language/communication/speech production, and 13% motor development-associated constructs. Conclusions: Data on social communication, expressive and receptive language, speech motor, and motor function are underrepresented. There is a lack of research into everyday use of language and into measures assessing language and communication early in life. Overall, longitudinal studies are required that include communication measures and their interrelations with other developmental domains.

Mental health of deaf people.

Deafness is a heterogeneous condition with far-reaching effects on social, emotional, and cognitive development. Onset before language has been established happens in about seven per 10,000 people. Increased rates of mental health problems are reported in deaf people. Many regard themselves as members of a cultural minority who use sign language. In this Review, we describe discrepancies between a high burden of common mental health disorders and barriers to health care. About a quarter of deaf individuals have additional disabilities and a high probability of complex mental health needs. Research into factors affecting mental health of deaf children shows that early access to effective communication with family members and peers is desirable. Improved access to health and mental health care can be achieved by provision of specialist services with professionals trained to directly communicate with deaf people and with sign-language interpreters.

Preschool Children with Hearing Loss: Social Communication and Parenting Stress.

Studies on parenting stress (PS) in parents of children with hearing loss (HL) have found relationships between child behavior, language skills and parenting stress. The role of early social communication skills has not been researched before. The aim of this cross-sectional study was to investigate the relationship between child behavior, social communication and PS. The study was performed in a subgroup of a total population sample from the AChild (Austrian Children with Hearing Impairment-Longitudinal Databank) study. Preschool children (n = 81) with all degrees of HL and average cognitive functioning and their families were included, and the Parenting Stress Index (PSI) was used. Through factor component analysis, compound scores for externalizing/internalizing problem behavior and hyperactivity were analyzed. Although mean PS was not elevated, the proportion of those with elevated scores was higher compared with the norm population. There was a strong correlation between child behavior problems and PS (strongest correlation: externalizing problem behavior r = 0.643; p < 0.001). All three problem behaviors accounted for 49.7% of the variance in PS. An indirect effect of social communication on PS was almost completely mediated by problem behavior (especially hyperactivity). The importance of social communication development with respect to problem behavior and PS is highlighted.

Deterioration of metabolic parameters during short-term psychiatric inpatient treatment: a prospective naturalistic study.

OBJECTIVE: To investigate the influence of a single episode of psychiatric inpatient treatment on metabolic parameters. METHODS: A total of 294 consecutive patients of an Upper Austrian psychiatric department were assessed at admission and discharge regarding bodyweight, body mass index (BMI), high density cholesterol (HDL), low density cholesterol (LDL), triglycerides (TG) and fasting glucose (FG), and the TG/HDL ratio. RESULTS: Patients showed an increase of BMI of 0.35 kg/m² (+ 1.3%) during a mean duration of inpatient stay of 25.8 days. LDL rose by 10.7 mg/dl (+ 8.1%), triglycerides by 23.0 mg/dl (+ 17%), HDL decreased by 4.4 mg/dl (-7.4%). Fasting glucose decreased by 3.6 mg/dl (-3.8%), yet the TG/HDL ratio, as a marker for insulin resistance, increased significantly from 2.86 to 3.58 (+ 25.2%) on average. Patients with psychotic disorders gained about three times more weight than patients with other diagnoses. Negative alterations of serum lipids were to be found in all diagnostic groups but were especially pronounced in patients with psychotic disorders who were treated with second-generation antipsychotics clozapine, olanzapine and quetiapine. CONCLUSIONS: Psychiatric inpatient treatment leads to clinically relevant deterioration of metabolic parameters within a short time, most pronouncedly in patients with psychotic disorders.

Effects of social networks on the quality of life in an elder and middle-aged deaf community sample.

This article endeavors to investigate the role of social networks in contributing to the quality of life of an elder and middle-aged Deaf population. In particular, it poses the question of whether a certain network composition (deaf and hearing network persons) provides positive resources to improve quality of life and attempts to identify moderating and mediating connections between social networks and quality of life. Based on the data collected in a survey of 107 members of the Deaf community aged 45-81 years, it was possible to ascertain the fact that a larger social network is significantly associated with a higher quality of life, but the size of the deaf network is principally decisive. The hypothesis that a bicultural network composition would have a particular positive effect on the quality of life could not be confirmed. Findings revealed that the effect of deaf network size on the quality of life is mediated by personal resources concerning self-efficacy and communication skills. Moreover, evidence was sound for the functional equivalence of social and personal resources, which suggests that potential negative effects of reduced personal resources on the quality of life could possibly be compensated by a larger deaf network and vice versa.

Special Issue "Early Intervention for Hearing Loss in Children: Drafting from Theory to Clinical Practice".

Globally, around 34 million children are affected by disabling hearing loss [...].

Multidimensional Family-Centred Early Intervention in Children with Hearing Loss: A Conceptual Model.

At least two per thousand newborns are affected by hearing loss, with up to 40% with an additional disability. Early identification by universal newborn hearing screening and early intervention services are available in many countries around the world, with limited data on their effectiveness and a lack of knowledge about specific intervention-related determinants of child and family outcomes. This concept paper aimed to better understand the mechanisms by which multi-dimensional family-centred early intervention influences child outcomes, through parent behaviour, targeted by intervention by a review of the literature, primarily in the field of childhood hearing loss, supplemented by research findings on physiological and atypical child development. We present a conceptual model of influences of multi-disciplinary family-centred early intervention on family coping/functioning and parent-child interaction, with effects on child psycho-social and cognitive outcomes. Social communication and language skills are postulated as mediators between parent-child interaction and non-verbal child outcomes. Multi-disciplinary networks of professionals trained in family-centred practice and the evaluation of existing services, with respect to best practice guidelines for family-centred early intervention, are recommended. There is a need for longitudinal epidemiological studies, including specific intervention measures, family behaviours and multidimensional child outcomes.

The link between social communication and mental health from childhood to young adulthood: A systematic review.

This systematic review investigates the current state of the literature on the association between social communication (SC) skills and mental health outcomes in children and young adults. We ran searches using terms describing SC and mental health in the following databases: PubMed, the Psychology and Behavioral Sciences Collection, APA PsychInfo, the Education Resource Information Center (ERIC) and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). We included studies that both measured SC before age 21 years and assessed a mental health component, such as behavior/conduct problems, anxiety, depression, or emotional problems, before age 30. Only peer-reviewed articles published in or after 2000 were retained. In total, 27 studies were included in the narrative synthesis. Overall, the methodological quality was good. A longitudinal design was used in 12 studies, seven of which sourced data from the Avon Longitudinal Study of Parents and Children. Most studies investigated the broad concept of pragmatic language and its influence on internalizing, externalizing, and peer-relationship problems. The analyzed publications included population-based studies and studies investigating special populations with existing mental health problems or at increased risk of developing them. The population-based cross-sectional studies showed significantly higher rates of SC problems in children with mental health problems while those with a longitudinal design found earlier onset and more persistent mental health problems in children who had the most severe SC difficulties. Studies with special populations confirmed more SC problems as compared to typically developing children and worse mental health outcomes in children with additional SC difficulties. The available literature thus shows consistently significant, mostly moderate associations between SC skills and mental health outcomes. SC difficulties earlier in life can predict mental health problems and impact their trajectories. Systematic review registration: [https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=286598], identifier [CRD42022286598].

Communicative deficits associated with maladaptive behavior in individuals with deafness and special needs.

Background: At least one in three individuals who are prelingually deaf has special needs, most commonly due to intellectual disabilities. The scant literature on challenging behavior in this population, however, suggests high rates of prevalence and an important need to better understand the contributing factors. Aim: We sought to analyze the prevalence of maladaptive behavior and its association with intellectual functioning, adaptive skills, language skills, and social communication in a population of adults with deafness and special needs. Methods: Participants were 61 individuals from three therapeutic living communities established for people with deafness and special needs. The participants had a mean age of 54.7 years, 64% were male. Intellectual functioning was measured with two versions of the Snijders-Oomen Non-verbal Intelligence Scale. The Vineland-II Scales were used to assess adaptive and maladaptive behavior. Language skills were measured with instruments specifically adapted for this population, including the Reynell Developmental Language Comprehension Scale, the comprehension scale of the Child Development Inventory, and the Profile of Multiple Language Proficiencies. Due to high correlations between instruments, a composite language score was used. A specific questionnaire to measure social communication in adults with intellectual disabilities was also utilized. Results: The mean nonverbal developmental reference age was 6.5 years, whereas the equivalent for the language measures was about 3.5 years. The prevalence rate of elevated maladaptive behavior was 41% (v-scale score ≥18) and 18% of the participants had a clinically significant score (v-scale score ≥21). Regression analyses showed that only language and social communication skills were significantly associated with maladaptive behavior, while intellectual functioning and adaptive skills were not. Conclusion: These findings emphasize the importance of the constant promotion of communicative skills, as those people with better language and social communication skills demonstrate lower levels of maladaptive behavior.

Validity and feasibility of a predictive language screening tool in 2-year-old children in primary pediatric care.

Objective: To assess the predictive validity and feasibility of the newly developed language screening tool, SPES-2 (Sprachentwicklungsscreening), for 2-year-old children in pediatric primary care. Methods: A prospective cohort study recruited 2,044 non-selected German-speaking children undergoing a regular well-baby check-up at the age of 2 years. Thirty primary care pediatricians spread over urban and rural areas screened the children using a short parent-reported questionnaire and direct assessment of word comprehension. To validate the screening tool, language skills were assessed using a standardized language screening tool in the complete sample 1 year later. Data of a random sample of 621 children were analyzed. Feasibility of the screening tool was evaluated using questionnaires completed by the participating pediatricians. Results: The new screening tool, SPES-2, demonstrated good diagnostic accuracy with AUC (Area under the Roc Curve) of 0.885, a sensitivity of 0.74, and specificity of 0.86, using a parent-reported questionnaire (expressive vocabulary, two-word combinations, parental concerns) as stage 1, followed by a stage 2 direct assessment of word comprehension by the pediatrician. The second stage was restricted to children who failed the parental screening. The screening identified children with high, moderate, and low risk of significant language deficits (SLD) at the age of 3 years, permitting tailored follow-up assessment and parental counseling. Practicality and acceptability of the screening were mostly rated as high. Pediatricians regarded the availability of follow-up diagnostic services and parent guidance as most important for a general implementation of the new instrument. Conclusion: The language screening tool, SPES-2, was valid for the identification of significant language deficits 1 year later, and considered as feasible within primary pediatric care.

Intellectual Disability Profiles, Quality of Life and Maladaptive Behavior in Deaf Adults: An Exploratory Study.

Individuals who are prelingually deaf and have intellectual disabilities experience great challenges in their language, cognitive and social development, leading to heterogeneous profiles of intellectual and adaptive functioning. The present study describes these profiles, paying particular attention to domain discrepancies, and explores their associations with quality of life and maladaptive behavior. Twenty-nine adults with prelingual deafness (31% female) and mild intellectual functioning deficits (mean IQ = 67.3, SD = 6.5) were administered the Vineland Adaptive Behavior Scales-II (VABS-II) and an adapted sign language version of a quality of life scale (EUROHIS-QOL 8). Intellectual disability domain discrepancies were characterized as at least one standard deviation difference between the social domain and IQ and the practical domain and IQ, and a significant difference, according to the VABS-II manual, between the social and practical domains. Domain discrepancies were found between intellectual functioning and both the practical (58.6%) and social domain (65.5%). A discrepancy between intellectual and social functioning was significantly associated with a higher level of internalizing maladaptive behavior (T = 1.89, p < 0.05). The heterogeneous profiles highlight the importance of comprehensive assessments for adequate service provision.

Understanding the Impact of Child, Intervention, and Family Factors on Developmental Trajectories of Children with Hearing Loss at Preschool Age: Design of the AChild Study.

Children with hearing loss and their families represent a large variety with regard to their auditory, medical, psychological, and family resource characteristics. Despite recent advances, developmental outcomes are still below average, with a significant proportion of variety remaining unexplained. Furthermore, there is a lack of studies including the whole diversity of children with hearing loss. The AChild study (Austrian Children with Hearing Impairment-Longitudinal Databank) uses an epidemiological longitudinal design including all children living in Upper and Lower Austria with a permanent uni- or bilateral hearing loss below the age of 6 years, irrespective of additional disabilities, family language, and family resources. The demographic characteristics of the first 126 children enrolled in the study showed that about half of the children are either children with additional disabilities (31%) and/or children not growing up with the majority language (31.7%) that are usually excluded from comprehensive longitudinal studies. AChild aims for a characterization of the total population of young children with hearing loss including developmental outcomes. Another goal is the identification of early predictors of developmental trajectories and family outcomes. In addition to child-related predictors the examination of family-child transactions malleable by family-centred early intervention is of particular interest. The study is designed as participatory including parent representation atall stages. Measures have been chosen, following other large population-based studies in order to gain comparability and to ensure international data pooling.