Parents Of Deaf Children Research Articles

Anne Borsay and Pamela Dale (eds), Disabled Children: Contested Caring, 1850-1979

Anne Borsay and Pamela Dale have produced an extensive collection of papers that explore the experiences of disabled children from a broad range of perspectives. Covering a period of 130 years, from 1850 onwards, the twelve chapters focus on a variety of disabilities and offer examples of care and welfare provision not only from the UK, but also Sweden, Spain and Australia. This collection, based on papers presented at a conference organised by the editors in 2007, does not attempt to follow a thematic approach to childhood disability; the range of disabilities included would make that a difficult, if not impossible, task. Instead the chapters are presented in chronological order, allowing the reader to follow the progression of the development of service provision, attitudes towards the care of disabled children and the nature of the lived experience of this group who are often neglected in disability discourses. The book sets out to identify the ways in which children's lives have been influenced by both their disability and the responses of caregivers towards the children. Despite the apparent lack of thematic arrangements, several themes emerge that cross the time span of the book and which can be found in both the British examples and beyond. One of the most important of these is the status of the home and the family as contested places for the provision of care and support for disabled children. Time and again, an attitude of ‘the state knows best’ comes through from the various source materials and the official preference for institutional care, rather than care provided by the family and in the home, is evident. For example, Mike Mantin shows how letters from the Cambrian Institution's Principal imposed a certain set of standards, values and behaviours on the parents of deaf children during home visits, effectively extending the school's role into the home and treating family members almost as surrogate pupils themselves, under the direct guidance of their child's teachers. Sue Wheatcroft, focusing on the Second World War period, shows that this attitude was still evident through the Child Guidance Movement, which emphasised the primacy of residential care for disabled children. Staffan Förhammar and Marie Nelson show that this was also true of the way Swedish medical authorities operated through the establishment of an isolation hospital in a fashionable spa town. By providing care in this way, the concept of ‘home’ often came to mean something significantly different for disabled children to that of the family home, with both beneficial and detrimental consequences for all parties.

Deaf Children with Complex Needs: Parental Experience of Access to Cochlear Implants and Ongoing Support

This paper discusses the experiences of parents of deaf children with additional complex needs (ACN) in accessing cochlear implant (CI) services and achieving ongoing support. Of a total study group of fifty-one children with ACN, twelve had been fitted with a CI. The parental accounts provide a rich and varied picture of service access. For some families accessing audiological assessment for CI was problematic, for others expectations, access to a qualified teacher of the deaf to FM amplification were problematic. Where services were similar in quality and quantity to typically developing deaf children who had received a CI there were high levels of satisfaction. For all the children implantation was delayed, the level of communication skills prior to implantation was very low, and expectations were uncertain and unclear. Deaf children with ACN require at least the same access to services as typically developing children. It can be argued that this group requires a higher level of input from qualified specialists, yet findings from this study suggest some children are likely to be receiving substantially less input, and in some cases no specialist input. Recommendations for audiological and educational management are also made.

Parents of deaf children with cochlear implants: a study of technology and community

The cochlear implant (CI) is increasingly used to treat deafness, despite arguments from the deaf community. Deaf children born to hearing parents are the fastest growing group of CI recipients, making parents the primary consumers. Instead of focusing on the controversy over implants, this article examines the clinical structures shaping parental decision-making and how parents integrate clinical practices into family and community. Observations and in-depth interviews were conducted in a CI clinic and at various community sites. The data reveal strong inter-institutional co-operations between the clinic, the state and local school districts. Working together, these institutions anticipate parental needs, foster a CI community and thus increase compliance. I conclude that implantation is an ongoing practice enculturating parents into a new community characterised by the adoption of long-term rehabilitative duties. However, the long-term nature of rehabilitation creates disparities in outcomes, which would be better understood through further research on the social relations in families and across parent networks in the CI community.

PARENTING A DEAF CHILD – HOW HEARING PARENTS COPE WITH THE STRESS OF HAVING DEAF CHILDREN

BackgroundParents of deaf or hard of hearing (D/HH) children experience greater parenting stress than parents of typically developing children. Studies of the stress experienced by these parents, and their methods of coping with it, give different results depending on the medical intervention used – cochlear implant or hearing aid – and in Poland such studies have not yet been done. This study addresses the ways by which parents handle the stress of adapting to their child’s deafness. It asks whether their styles of coping with stressful situations – task oriented, emotion oriented or avoidance – change after diagnosis is made. Another issue was whether medical intervention, e.g. cochlear implantation in prelingually deaf children, relates to a certain style of coping with stress, and whether the parents’ satisfaction with the decision to implant related to their behavior in stressful situations.Material and MethodsThe research is based on a questionnaire containing demographic information about the parents (age, sex, education), their satisfaction with the decision on cochlear implantation, and information about the child. A Polish version of Coping Inventory for Stressful Situations (CISS) was used.ResultsThe results show that mothers and fathers of D/HH children differ in the intensity of their emotion-oriented and avoidance styles and that in stressful situations mothers use these styles significantly more often than fathers. Parents of D/HH children using cochlear implants do not differ from those using hearing aids in terms of stress coping styles.ConclusionsThese insights offer practical suggestions of ways to psychologically help parents of deaf children, enabling them to cope better with their parenting a deaf child.

수화 사용 청각장애부모 가정 건청자녀의 인지심성동사 의미 구조화 발달

This study shows the developing organization of characteristic with cognitive verbs comparing two groups (children of deaf parents (CODA) and normal children) with elementary schooling phases. We used eighteen 7∼9 year old children with normal parents and deaf parents, and 18 adults. This study investigated how children and adults organize 22 cognitive verbs. Multidimensional scaling (MDS) procedures were used to uncover the relations participants perceived among the verbs. Children with normal parents and deaf parents differed slight of dimensions in the MDS space. The first and third dimension to emerge from this analysis was related to the uncertainty/certainty and constructive aspects of mental activities in both children. However, the second dimension in children with normal parents was related to the internal/external information-processing aspects of mental activities in children with deaf parents was related to the perceptual input/conceptual output information processing aspects. And cluster analysis and MDS between children with normal parents and adults was comparable. In these experiments, examining the organization of mental verbs in this way has enabled us to expand our understanding of the development of cognitive verbs in ways not evident in other methods. Our results indicate that children with normal parents and deaf parents appear to be different in their organization of linguistic concepts related to cognition. We conclude that linguistic home environment might play a significant role in the development of cognitive verbs based on the results of our study.

Being a Deaf Role Model: Deaf People's Experiences of Working with Families and Deaf Young People

The experiences of being a deaf role model have been little explored in the literature. This paper explores the role of the deaf role model as perceived by d/Deaf adults who carried out this role, when working with deaf young people, parents of deaf children, and professionals who work with them. The data were collected from part of the evaluation study of the National Deaf Children's Society's deaf role model project. Five focus groups were carried out with d/Deaf adults who were trained to be deaf role models across the UK. From deaf role models' perspective, five key issues were identified: the value of training; perceived benefits for families/deaf young people; managing parental expectations; addressing parental attitudes to deafness; and the personal impact of being a deaf role model. Recognizing and valuing d/Deaf adults' work with the families of deaf children/young people will benefit not only families and the other professionals who work with them, but also d/Deaf adults themselves.

Entering School: The Drama of Families with Deaf Children

Deafness can impair the normal cognitive and social development in a child. Therefore, the beginning of school is a cause of stress for the child, family and school community. Through a literature review, this paper aims to list the concerns that deaf children's parents have to deal with and to identify the role that the Portuguese sign language interpreter represents in the school organization and how he/she can be a stress reduction facilitator for children and their relatives.

The Deaf Community and Culture at a Crossroads: Issues and Challenges

The deaf community has seen the development of increasingly sophisticated hearing aids and other assistive technology, a rapid increase in the number of deaf children with cochlear implants, growing acceptance of American Sign Language (ASL), and recognition of Deaf culture. Each of these developments has proponents and critics. There is also ongoing controversy about the most appropriate methods for educating deaf children, especially issues of language and communication. This article uses social construction theory as a framework for discussing these developments and controversies and the diverse perspectives on what it means to be deaf. The authors make recommendations for social workers and other professionals with the central theme that all professionals must be free of bias about choices available to and made by parents of deaf children and by deaf individuals.

Basic audiology for medical students

AbstractDelay in the identification, diagnosis and intervention of hearing impairment and deafness is mainly linked to the lack of knowledge and commitment of medical doctors (MDs) towards this impairment. In 1997 and in 2006, a multicentre study on the status of prevention of hearing impairment (HI) and deafness in Mexico, directed towards the parents of deaf children, clearly showed this. Similar findings were obtained with a 10-item questionnaire designed to evaluate knowledge and attitudes towards hearing loss (HL) and used with those MDs selected in the annual national examination for the selection of candidates for residencies. From 23,482 applicants, 5464 MDs – the elite of general practitioners (GPs) who had graduated from more than 70 medical schools all over the country – were selected to start their specialization in 2007, and from these a total of 2727 completed questionnaires (49.9%) were obtained. These again showed a very low level of knowledge and misguided attitudes towards hearing, deafn...

In Addition to Benefits and Harms: The Relevance of the Political

When working with parents of deaf children, clinicians and educators should explicitly add political-justice considerations to benefit-harm considerations in their ethical analyses of available interventions to prevent or reverse children’s hearing impairments.

What do patients with hereditary deafness think of genetic studies?

Objective We conducted an attitude survey for patients with hearing loss (HL). The aim of this study was to investigate the opinions of patients or parents of deaf children regarding the deafness gene, genetic testing and a gene related HL. Method A questionnaire was sent to 201 individuals who visited the Department of Otolaryngology, Tokyo Medical and Dental University and who received genetic testing for HL from September 2000 to January 2006. There were 14 questions in the questionnaire that were classified into four topics related to a deafness gene and hereditary HL, genetic testing, outpatient department of medical genetics/genetic counseling, and the results of genetic testing. The study consisted of 140 respondents (70%) of 201 administered surveys. Result Before visiting our department, only 36% of the respondents were aware that a genetic factor was a cause of HL. Despite our explanation of a deafness gene and hereditary HL, 23% of 134 respondents answered that they had not received any such explanation. Furthermore, 14% of the 103 respondents who had answered that they receive the explanation, however, they did not fully understand it. Thirty-nine percent of the respondents made their own decision regarding the genetic testing, whereas 53.5% received the tests upon the advice of a physician or family member. In contrast, 91% of the respondents had a positive attitude towards other future genetic tests. The existence of the genetic outpatient department or genetic counseling has been seldom acknowledged, but upon learning of its availability, nearly one third of the respondents indicated that they would like to receive genetic counseling. Although no respondent had social and/or family problems after being informed that they had a deafness gene mutation, some respondents worried about the result. Conclusion The results of the survey suggested that the vast majority of the respondents were satisfied with genetic testing for HL and that the barriers to take the genetic test were less than expected. However, some respondents have a negative attitude towards genetic testing and counseling. Furthermore, the issue of disclosure may be burdensome to patients.

A study of electrocardiographic changes in congenital deaf school children

There is evidence of cardiac abnormalities in congenital deaf school children, together called as Jervel Lange Nielsen syndrome or Long QT syndrome. The main aim was to study the electrocardiographic changes in congenital deaf children. Fifty congenital deaf children aged 6-18 years were selected. ECG was taken in lead II, at rest and after exercise, as some are known to exhibit the abnormality after exercise. The child was made to run on the Tread mill till exhaustion. Corrected QT interval (QTc) was Calculated by Bazett's formula QTc = QT/ √R-R. ECG was also analyzed for other abnormalities like Twave changes, ST depression, rhythm abnormalities etc. Out of 50, 2 children showed resting QTc of 0.45 sec which is diagnostically high. Mean value of QTc in deaf children(Cases) before exercise was 0.4111 ± 0.0271 sec and in controls 0.379 ± 0.020 sec. Mean value of QTc after exercise in deaf(cases) was 0.403 ± 0.028 sec and in controls 0.376 ± 0.021 sec. Eight deaf children showed ST depression and 2 biphasic T and 2 notched T waves. Thirty-three deaf children's parents had consanguineous marriage. The results were explained on the basis of ion channellopathy in heart and inner ear which predisposes to sensorineural hearing loss and cardiac abnormality.

Provision of Genetic Services for Hearing Loss: Results from a National Survey and Comparison to Insights Obtained from Previous Focus Group Discussions

Hearing loss is a common sensory deficit and more than 50% of affected individuals have a genetic etiology. The discovery of 40 genes and more than 100 loci involved in hearing loss has made genetic testing for some of these genes widely available. Genetic services for deafness are also being sought more often due to the early identification of hearing loss through newborn screening services. The motivations for pursuing genetic testing, and how genetic services are provided to the client may differ among individuals. Additionally, information obtained through genetic testing can be perceived and used in different ways by parents of deaf children and deaf adults. This study aimed to follow up on focus group studies published earlier with a quantitative survey instrument and assess the preference of consumers for provision of genetic services. We conducted a national survey of hearing and deaf parents of children with hearing loss and of deaf adults. Data was compared and analyzed by hearing status of the participant, their community affiliation and the genetic testing status using nominal logistic regression. Consistent with our focus group results, the survey participants thought that a genetic counselor/geneticist would be the most appropriate professional to provide genetics services. Statistically significant differences were noted in the preferred choice of provider based on the genetic testing status. Parents preferred that genetic evaluation, including testing, occur either immediately at or a few months after the audiologic diagnosis of hearing loss. This data should help providers in clinical genetics keep patient preferences at the helm and provide culturally competent services.

Impact of genetic advances and testing for hearing loss: Results from a national consumer survey

Hearing loss is a common neuro-sensory deficit; nearly 50% of children with hearing loss have a genetic etiology. With the discovery of 40 genes and more than 100 loci involved in hearing loss, genetic testing is becoming more widely available. The information obtained through genetic testing can be perceived and used in different ways by parents of deaf children and deaf adults, based on their prior knowledge and understanding of these advances. It is therefore important to clarify the feelings of these potential consumers towards genetic services for hearing loss and understand their goals for genetic testing. The present study evaluates the feelings of consumers towards the advances in the genetics of hearing loss, the motivations for pursuing testing, and the perceived impact testing may have on their lives. We surveyed 808 parents of children with hearing loss nationally and 156 young deaf adults at Gallaudet University. In this study, learning the etiology of the hearing loss was the most commonly cited motivation for pursuing genetic testing and for parents was the most commonly cited outcome that genetic testing may have on their children's lives. Culturally Deaf respondents were less likely to believe that genetic testing will impact their lives or their children's lives and were less likely to report positive feelings about advances in the genetics of hearing loss. Cultural affiliation and genetic testing status, rather than hearing status, contributed more to the participants' responses.

Mental health and quality of life in deaf pupils

In the past decade, the living conditions of hearing impaired children have been changing due to new technologies and mainstreaming in schools. The majority of population-based studies in deaf pupils were conducted before these changes started to take place. The present study aimed to evaluate the current situation regarding aspects of mental health and, for the first time, quality of life in a representative sample of deaf pupils. The sample stems from a population of 145,000 pupils attending the first to ninth grades during the school years 2003-2005 in Upper Austria. From 186 children with bilateral hearing impairment of at least 40 dB registered at the centre for special education for children with sensory impairments, 99 with a performance IQ above 70 were included in the present study. Parents and teachers completed the strengths and difficulties questionnaire (SDQ), while parents and children were administered the inventory for the assessment of the quality of life in children and adolescents (ILC). Results indicated that deaf children scored significantly higher on the SDQ than their counterparts from normative samples according to both parent and teacher ratings. Differences were most marked with regard to conduct problems, emotional problems, and peer problems, and less marked for hyperactivity/inattention. While parents of deaf children had a generally positive view of their children's quality of life, deaf children provided a more complex picture, stressing areas of dissatisfaction. Mental health and quality of life were found to be unrelated to the child's degree of deafness.

Consanguinity and deafness in Omani children

This study was based on a national retrospective analysis of 1400 questionnaires on the causes of deafness in Omani children, collected from 1986 to 2000. It was found that 70% of the deaf children were from parents of consanguineous marriages, and 30% from non-consanguineous unions. In those with consanguineous families 70.16% were first cousin marriages, 17.54% were second cousins, and 10.86% were from the same tribe. The proportion arising from first cousin marriages was higher than the background rate of first cousin marriages in Oman. In the total cohort, 45% had other family members with hearing loss. There was a greater chance of other relatives being affected in the consanguineous group as opposed to the non-consanguineous group (29.7% versus 15.3%). In most cases the affected relative was a deaf sibling (67.8%). We have demonstrated a higher rate of consanguinity amongst parents of deaf children in Oman and suggest this is associated with a higher frequency of autosomal recessive deafness in this paediatric population.

A preliminary study looking at parental emotions following cochlear implantation

This preliminary research investigated the emotions of parents with cochlear implanted children. The object for the research was first to compare four emotions engendered in parents of deaf children before and after cochlear implantation. Second, to monitor changes in these emotions during a period of up to four years after implantation. Third, to see whether any of the emotions studied was significantly more prominent than the others, and fifth to identify any differences in emotions that were related to the gender of parents.A self-report questionnaire was given to 112 participants of whom 53 replied. There were equal groups of parents in two categories, those with children up to two years after implantation, and those two to four years after implantation. The responses were interpreted using parametric statistics. The results highlight that grief is the strongest emotional condition that parents experience before and up to two years after implantation, alongside family adjustments. Parents of the up to two years after implantation group generally have stronger feelings and are less satisfied than parents in the over two years implanted group. Finally, fathers use denial more than mothers. Considerations for future research and implications for paediatric cochlear implant teams will be discussed. Copyright © 2007 John Wiley & Sons, Ltd.

Teaching Sign Language to Hearing Parents of Deaf Children: An Action Research Process

This paper provides an overview of the challenges in learning a signed language as a second language, in particular for hearing parents with deaf children, and details an action research process that led to the design of a new curriculum for teaching Australian Sign Language (Auslan) to the families of deaf children. The curriculum was developed through research and consultation with various stakeholders. Implementation of the curriculum confirmed a lack of resources, leading to further research and the development of family-specific resources for teaching and learning Auslan. The process of development of these resources has potential application for other signed language teachers, researchers, teachers of the deaf and associated professionals who are working with families in their learning of a signed language. Copyright © 2007 John Wiley & Sons, Ltd.

The Acquisition of Classifiers in Verbs of Motion and Verbs of Location in Brazilian Sign Language

This dissertation explores the relationship between the language model to which children are exposed and their resulting language acquisition. Bickerton (1981) and others claim that children can become proficient in a language even whether a particular threshold of proficiency in the input is required for complete acquisition in the child. The acquisition of Brazilian Sign Language (LSB) is an ideal testing ground to assess the limits of Bickerton’s claim. Most deaf children in Brazil are born to hearing parents and learn LSB at schools from teachers who are not proficient signers. This dissertation explores the effect of the variation of proficiency of LSB input on the acquisition of one linguistic structure, in 61 children ages 4;6 to 11;10. Two other variables are examined as controls: length of exposure to LSB and chronological age. The structure under study is the classifier. In signed languages, classifiers are used with verbs to indicate properties of the Theme including visual and geometric characteristics, abstract semantic category, and instrumental function. This study assesses the effect of the earlier mentioned variables on the age of onset of production of classifier handshapes, the relative difficulty of production of different handshapes, and errors produced indicating the sequence of classifier acquisition. Four hypotheses were tested and confirmed in this study: The first hypothesis stated that quality of exposure is a significant factor in determining output. The results showed that the children of deaf parents, who are exposed to a natural signed language in the normal process, benefit from this input in the acquisition process. The second hypothesis stated that the quantity of exposure has a significant effect in determining output, but it cannot fully compensate for quality of exposure. The results have shown that the deaf children of hearing parents who have longer exposure to a signed language performed better than the other children who have less exposure time; however, their mean proportion of correctness does not equal their peers who have deaf parents. The third hypothesis stated that age has a significant effect in the

The Applicability of Webster-Stratton Parenting Programmes to Deaf Children with Emotional and Behavioural Problems, and Autism, and Their Families: Annotation and Case Report of a Child with Autistic Spectrum Disorder

This article describes a pilot project whose objective was to explore whether the Webster-Stratton Parenting Programme may be effective for hearing parents and their deaf children who present with conduct disorders and other emotional, behavioural and developmental problems. Outcome measures aimed at overall impact in decreasing behavioural problems and improving overall family function were used. Participants were hearing parents of deaf children referred to our specialist service whose assessment had recommended a parenting skills group as treatment of choice. The children had been diagnosed with behavioural problems with or without additional comorbidity. This pilot phase focused deliberately on one participant, in order to explore whether the approach justified further, more comprehensive evaluative research. Outcome was positive, suggesting that modified Webster-Stratton approaches may well be of use in deaf children of hearing parents.