Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Structure Principles.

This article is the seventh in a series of eight articles that comprise a special issue on family-centered early intervention for children who are deaf or hard of hearing and their families, or FCEI-DHH. This article, Structure Principles, is the third of three articles (preceded by Foundation Principles and Support Principles) that describe the 10 FCEI-DHH Principles. The Structure Principles include 4 Principles (Principle 7, Principle 8, Principle 9, and Principle 10) that highlight (a) the importance of trained and effective Early Intervention (EI) Providers, (b) the need for FCEI-DHH teams to work collaboratively to support families, (c) the considerations for tracking children's progress through developmental assessment, and (d) the essential role of progress monitoring to continuously improve systems.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Foundation Principles.

This article is the fifth in a series of eight articles that comprise a special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. The 10 FCEI-DHH Principles are organized conceptually into three sections (a) Foundation Principles, (b) Support Principles, and (c) Structure Principles. Collectively, they describe the essential Principles that guide FCEI for children who are DHH and their families. This article describes the Foundation Principles (Principles 1 and Principle 2). The Foundation Principles emphasize the essential elements of ensuring that families with children who are DHH can access early intervention (EI) and other appropriate supports, as well as highlight the need for provision of EI that is family-centered. Implementation of these FCEI-DHH Principles is intended to improve the lives and the outcomes of children who are DHH and their families around the globe.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Cultural & Global Implications.

This article is the third in a series of eight articles that comprise this special issue on family-centered early intervention for children who are deaf or hard of hearing and their families (FCEI-DHH). It highlights the origins of FCEI-DHH in Western contexts and well-resourced locations and emphasizes the role of culture(s) in shaping FCEI-DHH. This article also cautions against the direct application of the 10 FCEI-DHH Principles presented in this issue across the globe without consideration of cultural implications. Cultural perceptions of decision-making processes and persons who can be decision-makers in FCEI-DHH are explored. Deaf culture(s) and the benefits of exposure to DHH adults with diverse backgrounds are introduced. Structural inequities that impact families' access to FCEI-DHH programs/services and systems, within and among nations and regions, are noted. The need to consider the cultural influences on families is emphasized; this applies to all levels of FCEI, including the development of systems through implementation of supports.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Support Principles.

This article is the sixth in a series of eight articles that comprise a special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. The Support Principles article is the second of three articles that describe the 10 Principles of FCEI-DHH, preceded by the Foundation Principles, and followed by the Structure Principles, all in this special issue. The Support Principles are composed of four Principles (Principles 3, 4, 5, and 6) that highlight (a) the importance of a variety of supports for families raising children who are DHH; (b) the need to attend to and ensure the well-being of all children who are DHH; (c) the necessity of building the language and communication abilities of children who are DHH and their family members; and (d) the importance of considering the family's strengths, needs, and values in decision-making.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Guiding Values.

This article is the second of eight articles in this special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. Five foundational values that guide FCEI-DHH are described, providing an evidence-informed, conceptual context for the 10 FCEI-DHH Principles and other articles presented in this issue. These values are applicable for Early Intervention (EI) Providers and other professionals on FCEI teams, as well as for FCEI-DHH programs/services and systems. The five key values include (1) being family-centered, (2) responding to diversity, (3) involving invested parties, especially families and individuals who are DHH, (4) supporting holistic child development, and (5) ensuring fundamental human rights. These evidence-informed values are considered essential to the effective provision of FCEI-DHH supports.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Introduction.

This article is the first of eight articles in this special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH), or FCEI-DHH. In 2013, a diverse panel of experts published an international consensus statement on evidence-based Principles guiding FCEI-DHH. Those original Principles have been revised through a coproduction process involving multidisciplinary collaborators and an international consensus panel, utilizing the best available evidence and current understanding of how to optimally support children who are DHH and their families. This revision (referred to as expanded Principles) was motivated by the need to incorporate (a) input from family leaders and DHH leaders, (b) broader international and cultural perspectives, (c) new empirical evidence, and (d) research in human development. This Introduction provides an overview of the rationale, purposes, and main content areas to be addressed throughout the special issue.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Call to Action.

This Call to Action is the eighth and final article in this special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. Collectively, these articles highlight evidence-informed actions to enhance family well-being and to optimize developmental outcomes among children who are DHH. This Call to Action outlines actionable steps to advance FCEI-DHH supports provided to children who are DHH and their families. It also urges specific actions to strengthen FCEI-DHH programs/services and systems across the globe, whether newly emerging or long-established. Internationally, supports for children who are DHH are often siloed, provided within various independent sectors such as health/medicine, education, early childhood, and social and disability services. With this Call to Action, we urge invested parties from across relevant sectors to join together to implement and improve FCEI-DHH programs/services and systems, build the capacity of early intervention (EI) Providers and other professionals, extend research regarding FCEI-DHH, and fund EI supports, systems, and research, all with the aim of advancing outcomes for families and their children who are DHH.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Methods.

This is the fourth article in a series of eight that comprise a special issue on family-centered early intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, FCEI-DHH. This article describes the co-production team and the consensus review method used to direct the creation of the 10 Principles described in this special issue. Co-production is increasingly being used to produce evidence that is useful, usable, and used. A draft set of 10 Principles for FCEI-DHH and associated Tables of recommended behaviors were developed using the knowledge creation process. Principles were refined through two rounds of eDelphi review. Results for each round were analyzed using measures of overall group agreement and measures that indicated the extent to which the group members agreed with each other. After Round 2, with strong agreement and low to moderate variation in extent of agreement, consensus was obtained for the 10 Principles for FCEI-DHH presented in this special issue. This work can be used to enhance evolution of FCEI-DHH program/services and systems world-wide and adds to knowledge in improvement science.

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.

Calculation of postoperative bone healing of cystic lesions of the jaw-a retrospective study.

OBJECTIVES: There is a long history of studies into cystic lesions of the jaws. However, there is little data on postoperative bone regeneration. The aim of the study was to calculate the size of the residual bone lesions after cystostomies and cystectomies to predict the postoperative bone healing. MATERIAL AND METHODS: This retrospective study focused on patients undergoing cystectomy (n = 114) or cystostomy (n = 86), who were treated for cystic lesions between 2010 and 2015. New formulas were developed to measure the decrease in lesion sizes using the craniocaudal and mesiodistal diameters from preoperative as well as postoperative radiographs (panoramic radiographs, CT scans, CBCT). With these predictive models (calculated by linear regression analyses), it is possible to calculate how the lesions would shrink using initial size of the cyst and time after surgery for both dimensions. RESULTS: After cystostomy, the mesiodistal size was initial size 6.0 + 0.7 × initial size - 9.4 × time. The craniocaudal size was 5.1 + 0.7 × initial size - 7.3 × time. After cystectomy, the mesiodistal size was 0.4 + 0.7 × initial size - 8.4 × time. The craniocaudal size was 0.4 + 0.5 × initial size - 6.4 × time (R2 = 0.59 and 0.67, respectively). CONCLUSION: These formulas are suggested to be used to calculate residual size of bone lesion after cystostomy and cystectomy to predict postoperative bone healing. CLINICAL RELEVANCE: The formulas are based on deliberately simple measurement using only panoramic radiographs to encourage their application in daily clinical practice.

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.

Effect of dental implants on bisphosphonate-related osteonecrosis of the jaws.

PURPOSE: Bisphosphonate (BP)-related osteonecrosis of the jaw (BRONJ) is a side effect of BP therapy. Dental implants are believed to be a risk factor for developing BRONJ. In the present study, we analyzed the interval to the development of BRONJ in patients treated with BP who had received dental implants. PATIENTS AND METHODS: Patients with dental implants and established BRONJ were evaluated at the oral and maxillofacial surgery department (Medical University of Vienna). In addition, studies from 1978 to 2012 were included in a meta-analysis. Three groups were created: implantation before BP treatment, implantation after BP treatment, and implantation during BP treatment. The outcomes were evaluated using linear regression analysis. RESULTS: Patients who underwent dental implantation during (P < .001) and after (P < .001) treatment with BPs developed BRONJ more rapidly. The treatment duration with oral BPs was significantly related to the rapidity of developing BRONJ (P = .03). CONCLUSIONS: The insertion of dental implants during or after BP treatment accelerated the development of BRONJ. BRONJ occurred less frequently when the implants had been inserted before BP therapy had been started.

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.

Best practices in family-centered early intervention for children who are deaf or hard of hearing: an international consensus statement.

A diverse panel of experts convened in Bad Ischl, Austria, in June of 2012 for the purpose of coming to consensus on essential principles that guide family-centered early intervention with children who are deaf or hard of hearing (D/HH). The consensus panel included parents, deaf professionals, early intervention program leaders, early intervention specialists, and researchers from 10 nations. All participants had expertise in working with families of children who are D/HH, and focus was placed on identifying family-centered practice principles that are specific to partnering with these families. Panel members reported that the implementation of family-centered principles was uneven or inconsistent in their respective nations. During the consensus meeting, they identified 10 agreed-upon foundational principles. Following the conference, they worked to refine the principles and to develop a document that described the principles themselves, related program and provider behaviors, and evidence supporting their use (drawing upon studies from multiple disciplines and nations). The goal of this effort was to promote widespread implementation of validated, evidence-based principles for family-centered early intervention with children who are deaf and hard of hearing and their families.

A prospective, randomized, single-blind study to compare two methods of treating cystic lesions in the jaw.

OBJECTIVE: The study aimed to assess the usefulness of a bovine bone substitute material in treating cystic lesions in the jaw with a maximum diameter of <4 cm. MATERIAL AND METHODS: In this prospective, randomized, single-blind intervention study of 116 patients, 61 underwent cystectomy with a subsequent filling of the defect using a bovine xenograft, and 55 underwent cystectomy alone. Volumetric measurement of the cysts was performed preoperatively and 6 and 12 months postoperatively using the available digital volume tomography data sets. Follow-up appointments were made 14 days and 1, 3, 6, and 12 months postoperatively. RESULTS: Almost complete regeneration was seen in both treatment groups within 12 months, with no significant difference in absolute volume loss between the 2 groups (P = .521). Examination 14 days after surgery revealed a tendency for more wound healing disorders with the use of a bone substitute (P = .077). It was no longer possible to detect any further differences in later examinations. CONCLUSION: Using bovine bone substitute material has no radiologically measurable advantage over cystectomy alone without defect filling regarding bone regeneration. In addition, there was a tendency for more wound-healing disorders to occur in the bone substitute group.