Enablers and barriers for hearing parents with deaf children: Experiences of parents and workers in Wales,UK

Background

More than 90% of deaf children are born to hearing families who know little about deafness. Benefits from hearing screening at birth are often lost, as families find little information about pathways for deaf children but are key to ensuring deaf children receive relevant language and communication support. Systems surrounding deaf children and family members are crucial for children's health and social development. Experiences of hearing parents raising deaf children and understanding factors that influence families' experience of navigating pathways for deaf children through health and education services are currently underreported.

Methods

An exploratory study was conducted in Wales, UK. Twenty participants were interviewed, including 10 hearing parents of deaf children and 10 people who work with deaf children using semistructured interviews. Bronfenbrenner's ecological systems theory was used as a lens to explore the micro-, meso-, exo-, macro- and chronosystems that surround children and families. This study explores potential supports and barriers in those systems.

Findings

Findings are reported under two broad headings: enablers and barriers. Under enablers, it was found that provision of resources, supporting people and knowledge were key factors. Under barriers, a lack of knowledge, lack of provision and battling services and attitudes were key issues that need addressing.

Conclusion

Hearing parents of deaf children in Wales, UK reported experiencing a range of enablers and barriers that impact upon their experiences of raising a deaf child. Further provision is needed by policymakers and governments to recognise support needs to improve the outcomes for deaf children.

Patient or Public Contribution

This project was developed from initial discussions with the stakeholder reference group and progressed with the group's deaf panel and hearing parents with deaf children. The project's steering group was involved in study design, recruitment and continuous feedback on all stages of the research process.     

Everyday activities and social contacts among older deaf sign language users: relationships to health and well-being

The purpose of this study was to describe the everyday activities and social contacts among older deaf sign language users, and to investigate relationships between these phenomena and the health and well-being within this group. The study population comprised deaf sign language users, 65 years or older, in Sweden. Data collection was based on interviews in sign language, including open-ended questions covering everyday activities and social contacts as well as self-rated instruments measuring aspects of health and subjective well-being. The results demonstrated that the group of participants was homogeneous in their productive and leisure activities, regardless of gender and age. The number of productive activities was related to all aspects of health, while the number of leisure activities was related to perceived health and subjective well-being. No significant relationship was found between aspects of health and subjective well-being and the frequency of social contacts with family/relatives or visiting the deaf club and meeting friends. It is concluded that the variety of activities at the deaf clubs are important for the subjective well-being of older deaf sign language users. Further research should investigate the importance and perceived value of the various activities at the deaf clubs. When evaluating the results of this study, the fact that the total number of participants was small, and the dropout rate was high, has to be borne in mind.     

A psychosocial follow-up study of deaf preschool children using cochlear implants

The aim of the study was to explore patterns of communication between 22 children with cochlear implants (CI) and their parents, teachers and peers in natural interactions over a 2-year period. The children, between 2 and 5 years old when implanted, had used the implant between 1 and 3.5 years at the end of the study. Analyses of videorecorded interactions showed that meaningful oral communication was more easily obtained in the home setting than in the preschool setting. Patterns of communication between parent-child, content and complexity of dialogues, quality of peer interactions, communicative styles of adults, and the use of sign language in communication turned out to be important factors when explaining the result of the CI on the individual child's development. The children with the best oral skills were also good signers.     

高压氧辅助治疗突发性聋的疗效观察

目的观察高压氧辅助治疗对于突发性聋治疗效果的影响。方法100例按入院时间先后随机分为高压氧治疗组50例（55耳）和对照组50例（53耳）。治疗前后判断疗效分布。结果高压氧治疗组总有效率89．2％,对照组有效率70％。两组患者治疗后疗效比较差异有显著性意义（P〈0．05）。结论高压氧辅助治疗突发性聋比单纯药物治疗治愈率高,临床可首选。     

HIV and AIDS among the deaf

With the HIV/AIDS pandemic spreading all over the world, one of the most overlooked groups is the American deaf community. To appereciate the magnitude of HIV-related problems facing the deaf community, one needs to gain insights into the deaf community and the deaf culture. Complications such as differing viewpoints and life experiences greatly affect the avenues of information into the deaf community and the deaf community's receptiveness to the danger of HIV/AIDS. This article provides an overview of the deaf community and it's reaction to the AIDS crisis.     

AIDS knowledge,attitudes and behaviors among deaf college students: A preliminary study

Due to the dearth of knowledge in the literature related to any aspect of AIDS in the deaf community, a sample (N=84) of deaf undergraduate students at Gallaudet University was surveyed in order to determine levels of AIDS knowledge, AIDS-related attitudes and sexual behavior patterns among the sample. Results indicate that the students in the sample have relatively high levels of general knowledge about AIDS. However, the high levels of AIDS knowledge-and a reported moderate degree of comfort in discussing safe sex issues with sexual partners—among this sample do not correlate with less risky sexual behaviors. Results indicate that many of the students may be placing themselves at risk for AIDS and other sexually-transmitted diseases. Implications of the study for social workers and other practitioners are presented and suggestions for future research are offered.     

Young South Asian deaf people and their families: negotiating relationships and identities1

Abstract This paper explores how various and competing identity claims are negotiated by young deaf people and their families. Our findings, based on group and individual interviews with young South Asian deaf people and individual interviews with their families, illustrate the complex realities of identity negotiation and how this process occurs against the backdrop of ethnicity, religion, gender, racism and deafness. More generally, the structures against which these negotiations take place influence the identity choices to be negotiated. Equally, the struggles to define self‐hood in meaningful and fulfilling ways show agency and ingenuity at work. This helps us to understand a fundamental tension facing young South Asian deaf people as they make sense of their deafness. Deaf culture represented a source of strength and inclusion in a community, which reaffirmed and respected their difference as deaf people, while at the same time denying and undermining their ethnic and religious difference.     

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.     

The voices of parents: A qualitative study of a family preservation program

Most studies of family preservation services have used quantitative methods to examine program success. This paper reports on interviews with primary caretakers of children who have been abused and those with behavior problems between six months and three and one half years after family preservation services ended. Primary caretakers were asked three questions: What did you find to be the most helpful in your counseling? What did you find that did not help or that you disliked about counseling? After family preservation services, what happened with respect to the problems for which you were initially referred? Families found the support and nontraditional approaches to counseling helpful. Parents with children who had been abused particularly appreciated the teaching component of services. Brevity of the services and switching workers midstream caused the most concern for families. Finally, how families fared after intervention fell into a continuum from improved to deteriorated. The implications of these findings for clinical practice and program development are discussed.     

湖北某特殊学校52例耳聋患儿耳聋基因检测结果分析

目的 对某特殊学校耳聋患者进行聋病易感基因GJB2、GJB3、SLC26A4和线粒体DNA4(mtDNA)个基因13个位点的筛查,并与该地区正常儿童进行比对,了解其突变基因与位点。方法 2017年3-9月采集52例耳聋患儿与1 131例正常儿童的外周血,提取基因组DNA,应用遗传性耳聋基因芯片检测试剂盒对GJB2、SLC26A4、mtDNA及GJB3基因的13个突变位点进行检测。结果 52例耳聋学生中18例(34.63%)突变携带者,携带不同突变基因。GJB2基因突变13例(25.00%),其中纯合突变3例(5.77%),单杂合突变6例(11.54%),复合杂合突变4例(7.69%)。SLC26A4基因突变3例(5.77％),其中纯合突变2例(3.85%),单杂合突变1例(1.92％);mtDNA基因突变2例(3.85％),均为1555A>G均质突变;未检测到GJB3基因突变。而1 131例正常儿童中125例(11.05%)突变携带者,携带不同突变基因。GJB2基因突变79例(6.99%),SLC26A4基因突变35例(3.09％),mtDNA基因突变11例(0.97％),未检测到GJB3基因突变。耳聋患儿与正常儿童耳聋基因检测分布差异有统计学意义(χ²=25.98,P<0.001)。结论 该聋哑学校耳聋突变热点基因以GJB2和SLC26A4为主,且GJB2 235delC(19.23％)是最常见突变位点,耳聋基因检测为减少出生缺陷提供了依据。     

Validity and reliability of the Spanish sign language version of the KIDSCREEN-27 health-related quality of life questionnaire for use in deaf children and adolescents

Objective

The aim of this paper was to test the validity and reliability of a Spanish sign language (SSL) adaptation of KIDSCREEN-27, a health-related quality of life (HRQoL) questionnaire for use in deaf children and adolescents.

Methods

We performed an observational cross-sectional study of 114 deaf children and adolescents aged 8 to 18 years old. The Spanish version of the KIDSCREEN-27 was adapted to SSL through the translation-back translation technique. The adapted questionnaire was then administered using a web tool to ensure complete access to study participants. Floor and ceiling effects were calculated. Structural and cultural validity were tested using exploratory and confirmatory factor analysis. Cronbach's α was used to assess internal consistency. The questionnaire was administered for a second time to the entire sample after 2 to 4 weeks (test-retest reliability).

Results

In the SSL version of the KIDSCREEN-27, as in the original Spanish scale, five dimensions explained 59% of the variance. None of the participants obtained the minimum or maximum scores on the scale (floor and ceiling effect, respectively). Confirmatory factor analysis showed the goodness-of-fit of the factor solution with five dimensions of the SSL version. The Cronbach's α of both the total scale and of each of the distinct dimensions was above 0.75. The intra-class correlation coefficient of the test-retest scale was considered acceptable in all the dimensions.

Conclusions

The reliability and validity of the SSL version of the KIDSCREEN-27 are similar to those of the original Spanish version, providing a new tool for measuring HRQoL in deaf children and adolescents.     

Satisfaction with formal support and education for children with autism spectrum disorder: the voices of the parents

INTRODUCTION: The aim of the present study was to identify and describe factors associated with variations in the level of parental satisfaction with formal support and education for children with autism spectrum disorder (ASD) in Flanders. METHODS: Participants were recruited by a mailing from a diagnostic centre for pre-schoolers and by advertisements dispersed in the Flemish parent organization for ASD and in services and special schools. The sample consisted of 244 parents of children with ASD (age range: 2.69-17.81 years, male/female sex ratio 4:1). The data were collected using a questionnaire on experiences with education and support, which was compiled for the purpose of this study. The data resulting from the questionnaire were supplemented with information obtained from semi-structured in-depth interviews with a stratified sample of 15 parents. RESULTS AND CONCLUSIONS: The study revealed that parents experienced difficulties with the diagnostic process, with support and education provided by mainstream settings and with the accessibility of autism-specific service provisions. Conversely, parents reported to be satisfied with the quality of autism-specific support and education. Predictors of overall satisfaction were parental involvement in formal support, knowledge of available service provisions and time between first consultation and final diagnosis. Practical implications of the results are discussed.     

Negotiating deaf-hearing friendships: coping strategies of deaf boys and girls in mainstream schools

BACKGROUND: Increasingly, deaf students are educated in mainstream school environments. This poses a question of how deaf children negotiate the demands of forming friendships with their hearing peers. The present study was designed to examine coping strategies of 35 deaf children attending full or partial mainstream school settings. METHOD: Using a qualitative analysis design, a range of coping strategies used by the children was described based on parents' reports. The relative success of these coping strategies in establishing relationships with hearing peers was assessed by examining strategies that increased the social success of deaf girls and boys. RESULTS: The results showed differences by gender in the effectiveness of coping strategies used by the participants. Deaf girls who were confident and frequently asked for clarifications or who were comfortable playing alone tended to achieve good relationships with hearing peers. In contrast, deaf boys' relationships with hearing peers benefited mostly from the boys' ability to perform well in sports. CONCLUSIONS: These findings are discussed in light of existing research on coping and current debates on the benefits of mainstreaming for deaf children.     

Silenced voices: hearing the stories of parents bereaved through the suicide death of a young adult child

The current paper reports findings from a qualitative research project that aimed to explore parents’ experiences following the suicide death of their young adult child. Twenty‐two Australian parents told of the suicide death of their son or daughter during the data collection period (2003 to late 2004). One narrative theme drawn from the interview data is reported here: the way in which suicide‐bereaved parents feel unable to talk about their child’s life and death, their experience of suicide and their resultant bereavement. Parents reported being silenced by others and silencing themselves in relation to talking about their bereavement. Parents’ private stories are used to explain the difficulties they faced given the contemporary social and cultural context of grief and suicide. Then follows an examination of the impact these difficulties had on their ongoing grief narrative and availability of social support. Implications for health and social care intervention are presented to assist in better preparing support workers in their interactions with parents bereaved in this manner.     

Infants' use of baby sign to extract unfamiliar words from the speech stream

The ability to extract words from fluent speech is crucial for language learning. Infants use environmental information to aid in this process. Baby sign is a popular trend that may aid an infant in segmenting the speech stream and extracting words. A study designed to test the effects of baby sign to aid infants in extracting words from the speech stream was conducted. Six-month-old infants were shown videos of passages where either the speaker's face, hands (sign only), or both (face and signs) were visible. A head-turn preference procedure was used to test infants' ability to identify familiarised nonsense words versus control nonsense words. The resulting data are the first to demonstrate that prior exposure to baby sign can aid an infant in extracting unfamiliar words from fluent speech and six-month-old infants can use a speaker's face as a cue to extract words from speech.     

How Japanese parents of deaf children arrive at decisions regarding pediatric cochlear implantation surgery: a qualitative study

In recent years, many children with severe or profound congenital hearing loss have undergone treatment to receive cochlear implants; however, the efficacy and risks associated with pediatric cochlear implants are still unknown. Some deaf adults are opposed to parents making the decision regarding cochlear implants for their children. To elucidate the benefits and risks perceived by parents and to investigate parents' decision-making processes, we interviewed 26 parents of deaf children (aged 12 years or younger) who live in the wider Tokyo area, Japan. The results showed that the participants perceived auditory and speech improvements as benefits. On the other hand, participants pointed out various risks associated with cochlear implantation such as medical complications, restrictions on daily activities, cost of cochlear implant upgrades, low effectiveness, and the negative psychosocial impact associated with the implants. Participants who emphasized the benefits of the surgery tended to approve of cochlear implants. Participants who emphasized the risks of the surgery tended to disapprove. All participants, however, were reluctant to make the decision to undergo cochlear implants on behalf of their children due to the uncertain benefits and risks. Participants who believed that early implantation during infancy would be associated with better outcomes regarded their surrogate decision-making as necessary and approved the treatment. This decision, however, was made with certain stipulations; for example, these parents resolved to discuss the decision with their children as they got older, and would give their children the option of having the implant removed. Those who did not believe claims about the effectiveness of early implantation postponed decision-making. These results suggest that guardians face difficulty in decision-making and need information and support from various professionals, deaf adults, parents of children with implants, and children with implants themselves.     

Attitudes and responses of parents to pre-adolescent masturbation

As part of a larger study of parental roles in sex education, a stratified probability sample of 1482 parents of three- to eleven-year-old children were interviewed about their knowledge, attitudes, and practices with reference to masturbation on the part of their children. A large majority of parents accepted the fact that children did masturbate, a smaller majority agreed that masturbation among children was alright, but less than half wanted their children as adolescents to have a positive attitude toward masturbation. Identified events of masturbation were reported to be more common among boys than girls, with mothers reporting higher incidences for both boys and girls than fathers reported. Parents with higher levels of education and liberal sexual attitudes were more positive on most attitudinal items about masturbation and reported a higher incidence of such conduct among their children. Parents who attended church more frequently were less likely to report positive views and conduct. Parents who reported they had masturbated as children were most likely to report positive views and a high incidence of masturbation on the part of their children. In general mothers played a more important role than fathers in transmitting knowledge and were more liberal in their attitudes. Negative information and attitudes toward masturbation remains a common response of parents when they are confronted with children's masturbation.This research was supported by grants from the Cleveland Foundation, The Gund Foundation, and the JDR III Fund. My thanks to Professor Cathy Stein Greenblat, Rutgers University for her comments on this paper. An earlier version of this paper was presented at the Eighth Annual Meeting of the International Academy of Sex Research, Copenhagen, Denmark, August 1983.     

Women's health: women's voices

This paper presents the results of an exploratory study into the health concerns of women in South Wales. The objective was to obtain information on the way in which women view their own health and the health issues that concern them. The research design replicated a study carried out in Canada by one of the authors. Sixty-five women were interviewed using a structured interview schedule. The core question on the interview schedule took respondents through a list of 68 health and social problems. They were asked to indicate whether they had been worried about or had experienced any of these problems in the previous 6 months. The results support the findings of the Canadian research that reproductive health is not central to women's health concerns. On the contrary, among the most frequently mentioned problems were tiredness, stress, headaches and arthritis. The most frequently mentioned social problem was worrying about money. Women linked their health concerns with other problems such as unemployment, problems combining child care and paid employment and worrying about money. These problems created stress and, in turn, stress either led directly to ill health or else helped to foster ‘unhealthy’ life styles. Women were aware of the possibly harmful effects on health of smoking or drinking, for example, but resorted to them in order to cope with their stressful lives. One of the main conclusions of the study is that it is essential to incorporate women's health concerns into the policy-making process. Women's main health concerns are related to the stressful nature of their lives and, particularly in South Wales, to poverty and unemployment. So-called unhealthy lifestyles are often a response to stress and enable women to cope. This needs to be taken into consideration by health promoters. Finally, more research is required into women's health concerns and their understanding of health and illness.