Families Coping with a Deaf Child - Essay Example

Families Coping with a Deaf Child Regis College School of Nursing and Health Professions Graduate Nursing NU 669 Family Systems Nursing Theory Evidenced Based Family Nursing Practice with Underserved Populations Name July 2009 1. Introduction 2. Analysis of Underserved Population 2.1 Description of Deafness in Children 2.2 Incidence of Child Deafness in Hd Families 2.3 Related Health and Social Systems Problems 3. Selected Review of Literature 3.1 Discussion Article 1: Stress and Coping in Families with Deaf Children. (Feher-Prout, 1996). 3.2 Discussion Article 2: The deaf child in hospital. (Chandler, 2001). 3.3 Research Article 1: Parenting Stress and Social Support in Hearing Mothers of Deaf and Hearing Children: A Longitudinal Study. (Lederberg and Golbach, 2002). 3.4 Research Article 2: Sense of Coherence: A Relevant Resource in the Coping Process of Mothers of Deaf and Hard-of-Hearing Children? (Hintermair, 2004). 3.5 Research Article 3: Parental Resources, Parental Stress, and Socioemotional Development of Deaf and Hard of Hearing Children. (Hintermair, 2006). 4. Direction and Implications 4.1 Directions and Implications for Clinical Practice/Role of Advanced Practice Nurse 4.2 Directions and Implications for Evidenced Based Nursing Research 5. Conclusion Families Coping with a Deaf Child 1. Introduction This paper seeks to explore and evaluate research, theoretical and clinical, pertaining to the problems associated with families having to cope with a deaf child, an underserved population, from a family systems nursing perspective. This is an Hd scenario (Hearing parents, deaf child). A synthesis of the literature will then be made to facilitate discussion of the direction and implications for family systems nursing practice, the role of the advanced practice nurse, and evidenced based nursing research. 2. Analysis of Underserved Population 2.1 Description of Deafness in Children Deafness is a condition, which causes the person to be unable to hear properly, but there are a number of degrees of deafness making the condition anywhere from mild to severe. Children may be either deaf, Deaf, hard of hearing, or have acquired deafness. The deaf are those who are unable to hear speech without the use of a hearing aid. Deaf (i.e. with a capital D) refers to users of sign language who also share a common “heritage, social afflilation, educational background, experience of oppression and culture” (NCTSN, 2004). In other words, whereas the ‘deaf’ are an audiologically distinguished group, the ‘Deaf’ also indicates a sociolinguistic and cultural affiliation. Although the deaf cannot hear, many tend to have sharper visual skills instead (CHS, 1998). Those who are ‘hard of hearing’ have a mild to moderate loss of hearing (or reduced hearing acuity) so can communicate without amplification to some degree. And, the loss may be either permanent or fluctuating. Acquired deafness occurs when the hearing loss begins at a later stage of the child’s development or in adulthood. Permanent loss of hearing affects is known as ‘sensorineural hearing loss’. It is caused by damage to the inner ear, or the auditory nerve as a result of infections, medications, being exposed to loud noise, head injuries, or due to defective genes. (Chandler, 2001) Infections to the middle or outer ear are more common, especially in children, but the accompanying hearing loss, known as ‘conductive hearing loss’ is treatable and therefore not permanent. Middle ear infections (otitis media) are caused by bacterial/viral infections and are actually common in young children. These parts of the ear can also be affected by excessive wax, presence of foreign bodies or auditory canal swelling. A combination of sensorineural and conductive hearing loss can also occur. 2.2 Incidence of Child Deafness in Hd Families There are two complications in providing accurate statistics of the number of deaf children. Firstly, there are varying definitions, and degrees of deafness as touched upon above, and secondly the deafness may not be apparent in babies until much later (TFNIH, 1999), usually around 2 years of age. Newborns are not routinely tested for hearing loss either. Simple evoked otoacoustic emissions or auto-auditory brainstorm response tests can be conducted in these cases as early diagnosis is advisable so that appropriate treatment can be given. Keeping in mind the complications, several estimates have of course been made. “Approximately 3 per 1000 babies are born with a significant hearing loss, and many more are born with milder forms of hearing loss.” (White, 1998) This proportion rises if people with a severe hearing impairment are included and further still if it includes “everyone who has any kind of trouble with their hearing” (Mitchell, 2007). In the 2002-03 academic year, 40,282 American students were found to have a hearing loss (GRI, 2003). Of these: Less than 1.000 were under 3 years of age although the age of onset was from birth for over 40% of the total; 54.4% were male, 45.6% were female; Over half were Caucasian and 76.2% were from English speaking households; The other two largest groups were blacks and Hispanic/latino probably reflecting the ethnic composition of the U.S.; The cause of over a half could not be determined but of those that could, the majority 20% was attributable to hereditary causes; Approximately 90% have hearing parents and 80% have hearing siblings; 31.2% had a profound (above 91dB) degree of hearing loss whereas figures for each of the 5 other degree categories were roughly equal at an average of 13.74%; Only 8.4% used a cochlear implant; 42.9% used a combination of sign and speech for receiving instruction, 46.1% used only speech, 9.5% sign only, 0.4% cued speech, and 1.1% used other methods; The majority 45.9% attended a ‘regular education setting’, 32.2% a self-contained classroom, 26.8% a special school or center, 13.2% a resource room, 2.9% were taught at home, and the rest in ‘other settings’; The majority 36.9% did not spend any integrated time with hearing students at all, but 30.7% spent 26 or more hours per week, and the rest less than this; Almost 60% received speech training, 23.4% sign interpreting support, 35.2% itinerant teacher services, and 23.5% auditory training; Although more than 60% had no other disability, about 10% were also learning disabled, and 9.3% were mentally retarded; Nearly 70% had one or more functional limitation of which over half was in communication. As for trend, according to Federal surveys for the three years or older age group, “The number of Americans with a hearing loss has evidentially doubled during the past 30 years” (ASLHA, 2009). Exposure to loud noises is an increasing social problem nowadays and is one of the reasons behind the increasing incidence of hearing loss. But many people’s sense of hearing deteriorates in old age, so “the prevalence of early childhood hearing impairment and deafness is low” (Mitchell, 2007). Families with such children are therefore part of a high-risk but low-incidence population. 2.3 Related Health and Social Systems Problems Apart from the hearing impairment and obvious difficulty in communicating, many deaf children also have a number of other related health and physical problems. “It is estimated that up to 40% of all deaf children have some extra health, social or educational need… known as additional needs.” (NDCS, 2007) These can be a result of such conditions as asthma, colour blindness and dyslexia, or severe conditions such as learning and physical disabilities. In any case, early identification of all the physical problems and intervention can make a big difference. It “offers the best chance of the language, communication and speech abilities of deaf children developing in line with the developmental pattern and time frame for hearing children” (DfES, 2003). During part of the 15-year longitudinal Gallaudet Infancy Study (GIS), videotaped observation of the interaction between hearing parents and 10-12 months old deaf infants (Hd) showed that compared to Hh infants “they were found to watch their mothers for longer time periods, to become more distressed during the Still Face segment, and to display more negative affect (Meadow-Orlans et al, 1987) showing the need for greater attention and comfort, On the other hand, Hd mothers were found to be less responsive to their infants’ object-gaze than Dd or Hh mothers (Spencer et al, 1992) suggesting an inability to cope. Hearing difficulties no doubt have an effect on the child’s educational development as well. Their speech and language development are held back. Even much of what children learn before their formal education is attributable to hearing incidental conversations (Flexer, 1993). And, even mildly deaf children are invariably held further back if they miss important classroom conversations. Unless there is early intervention, this can then lead to impaired language development. Whatever the degree of hearing loss, the consequences can be handicapping for children. Moreover, deaf children tend to have a low self-image, and also fall behind in socio-emotional development. Trauma is also a particular problem in this underserved population. The children tend to be “more vulnerable to neglect, emotional, physical, and sexual abuse than children in the general population” (Sullivan et al., 1998). They are also four times more likely to be victims of crime (Sobsey, 1996), Communication barriers make it difficult to teach deaf children about safety, and if they are victims of trauma they too experience fear in disclosing details, not forgetting how isolated they feel too. The lack of vocabulary for emotional terms is also an obstacle. In short, deaf children are a highly vulnerable group. Then given the typically “higher incidence of sensory, behavioural, emotional, or cognitive difficulties” (Hindley, 1998), and that opportunities for them are limited for learning and socializing, and so on, this only compounds the problem. As for assisting in communicating, parents with deaf children now have the option of cochlear implants. There are also choices for establishing other modes of communication in severe cases. Apart from sign language, this can be the use of auditory-oral, auditory-verbal, and cued speech. The deficiency in using the sense of hearing mean that the deaf child may become accustomed to making greater use of visual communication and physical touch instead. An holistic approach is ‘total communication’ in which “all possible communication methods [are used] to assist deaf children in acquiring and understanding language” (Adams, 1997). 3. Selected Review of Literature 3.1 Discussion Article 1: Stress and Coping in Families with Deaf Children. (Feher-Prout, 1996). Professionals dealing with (Hd) families are trained to assist them cope with the stages of shock, anger, denial and grief in response to a diagnosis of deafness but this has only come about recently. It is a time of great stress for those who have had little contact with the deaf before and therefore know little about its implications. Additionally, “Parents are often swamped with information on amplification devices, sign language, educational methods, school placements, and legal issues.” A federal law requirement is for intervention to be family focused. This article is a literature review itself that summarizes information from the psychological model of individual stress and coping, family science’s model of family stress management, and literature on family adjustment to disability “to broaden our understanding of family adjustment to a deaf child.” It also “traces the development of professionals’ understanding of the reciprocal influences between deaf children and their families and describes recent research indicating that the impact of deafness on families is complex and variable.” Most psychologists use the cognitive model for stress and coping such as the one proposed by Folkman et al (1979). Thus their focus of study is how individuals react to stress. A diagnosis of deafness is a highly stressful time, more so for hearing parents than for deaf parents. The two differ in preparedness and experience. The coping process then serves to regulate emotion and adjust the person-environment relationship, and is usually either ‘emotion-focused’ or ‘problem-focused’. This requires sppraising the stressor and available resources, and choosing behaviours to regulate emotions or solve problems. The problem of confusing information and contradictory opinions sometimes overwhelms parents that they ask questions that professionals have to answer. Family stress theory is concerned with how families manage stress and derives from Reuben Hill’s ABC-X model of family stress management. The family is conceived as a system; it has a structure and rules to “ensure its growth and survival”. But under stress it lack the rules on how to effectively communicate with a deaf child, which can then lead to a crisis “if family members fail to perform roles, make decisions, and care for each other”. The basic ABX-X model: A (provoking event) + B (family’s resources or strengths) + C (meaning attached to event) = X (degree of family stress or crisis) The coping strategies help families to manage or adapt to the stressful situation. Burr and Klein (1994) suggest there is a developmental sequence as follows: At level I there are attempts to change family rules, for example by reassigning responsibilities. At level II, there are deeper changes about the rules, for example adjustments to “the intent and purpose of household routines”. Level III strategies “refer to changes in a family’s paradigm, its basic values and beliefs”. Applied to deafness, family first adjust rules “as they adapt to the demands of absorbing complex information about hearing loss, learning new communication strategies, and managing the educational and legal bureaucracy” (level I). Then they might alter the purpose of household routines from maintaining order to providing practice in communicating (level II). Finally, questioning the very meaning and purpose behind the unexpected even is the level III strategy. The third set of literature looks at how disability influences the family system and vice versa. The family is defined by both structure (type of family, cultural style and ideology) and function (subsystems, cohesion and adaptability, communication, etc.). As regards the latter, an example is the marital relationship. This can influence how a disabled child is managed, and conversely “the strain of dealing daily with disability may affect the parents’ marriage”. Seligman’s theory also considers the family life cycle and how it changes by the disability, and looks at the family residing within a larger community and culture. So, “messages from friends, neighbours, health care workers, the mass media, and the political system have a major impact on the family”. Hence, the stress experience by families with disabled children is not acute but chronic. The article then continues with a historical perspective of families and deafness. This shows that there has been progress in our understanding of the impact of a deaf child in hearing families “but that much remains to be learned”. Traditionally there was a focus on the negative effects. But even now survey indicate parents not being completely satisfied with available resources. “Correlational studies indicate that the presence of coping resources, such as problem-solving skills and social support networks, contributes to successful adaptation to a deaf child”. As for clinical practice, it appears that stress and coping strategies are utilized at an individual level but not so much at the family level. “Adopting a family systems perspective suggests new questions about how families adjust to a deaf child” such as how roles and relationships within a family change after learning of a deaf child. Furthermore, it is not only about resources available to families, but also about family perceptions and its implications for the child. For example, cochlear implants are perceived both positively as well as negatively. This article’s strength is the range of literature it reviews to enhance our understanding of stress, coping strategies, and reciprocal influences. 3.2 Discussion Article 2: The deaf child in hospital. (Chandler, 2001). This article aims to provide “an understanding of the physiology of hearing and how different types of deafness can impact on the child and family”, to make nurses aware of available resources to assist hearing impaired children and their families, as well as heighten deaf awareness. The first part of the article details the anatomy of the ear, its inner, middle and outer parts, and their role in the hearing process. It then describes the different types of deafness as section 2.1 of this paper viz. sensori-neural and conductive deafness. This is followed by a discussion ototoxic medication i.e. drugs that are damaging to the ear. The ‘Screening and detection’ section points out, “a large percentage of hearing-impaired children remain undiagnosed until three years of age”, and covers neonatal screening, the role of the ENT consultation and audiological testing. The degrees of impairment, use of hearing aids, schooling issues etc. are also covered. On the theoretical concept of overcoming ‘guilt’, Whaley and Wong (1999) mention the need for ongoing support and guidance for parents. For parents there is information on agencies that can give support and advice, and an important reminder that “A deaf child can be more at risk of road traffic accidents and the family and carers of a young deaf child need to be more vigilant than a family with a hearing child”. As for communication, information on sign language and lip-reading is given. Given the number of babies born with a permanent hearing loss, this is also a useful skill for a nursing team. It is pointed out that being in hospital is stressful enough but with a deaf child it can be even more difficult, and “parents often feel reluctant to leave their child as it can make them even more isolated”. The role of the interpreter is described, pointing out that it requires additional training, “particularly for interpreting for seeking consent and during examination of the patient”. Practice issues for nurses include understanding of ‘deaf culture’, and considering attitudes towards dead people. For example, the opportunity for mixing of deaf families, avoiding misinterpreting signs of a deaf child, and gaining attention of a deaf child. This is a very informative article that covers the physiology of normal hearing, what hinders a child from hearing normally, how to minimize the risk of hearing loss and a host of other facts. It does not cover theoretical content in much detail but is strong on practical information, and details of practical skills. As such it contains essential knowledge that all nurses dealing with deaf children and their parents should know and the skills they should possess. The child needs a lot of attention, but parents also “need help with coming to terms with diagnosis or treatment of hearing impairment”. 3.3 Research Article 1: Parenting Stress and Social Support in Hearing Mothers of Deaf and Hearing Children: A Longitudinal Study. (Lederberg and Golbach, 2002). This was a longitudinal study designed to investigate “the impact of child deafness on mothers’ stress, size of social networks, and satisfaction with social support”. 23 hearing mothers of deaf children and 23 hearing mothers of hearing children completed a series of self-report questionnaires at 3 stages. At 22 months of age, mothers of deaf children were more pessimistic than mothers of hearing children concerning their children’s communicative abilities and in their achieving self-sufficiency. However, at 3 and 4 years of age, the Parenting Stress Index (PSI) found no such difference. “Likewise, mothers’ ratings of satisfaction with social support were not affected by child deafness, nor did they change developmentally.” Differences though, were found in the types of support networks utilized. “Mothers of deaf 22 month olds reported significantly larger professional support networks. The suggestion is that most “mothers of deaf children do not feel a high level of general parenting stress or dissatisfaction with their lives and support networks” except for specific areas of deafness. Moreover, as “parenting stress was highly stable”, there should be intervention for mothers of deaf children when expressing high levels of stress. 3.4 Research Article 2: Sense of Coherence: A Relevant Resource in the Coping Process of Mothers of Deaf and Hard-of-Hearing Children? (Hintermair, 2004). This is a study of mothers of children with hearing impairment, and the importance of ‘reported sense of coherence’. That is, a basic feeling and specific view that assumes there is a “sufficient understanding of the things happening around” them, and that they can be influenced. It is comprised of a sense of comprehensibility, manageability, and meaningfulness. As an exploratory study, sense of coherence is studied “in relation to the experience of stress and subjective life satisfaction and in the context of other relevant variables in coping”. The research involved 235 mothers responding to a questionnaire and conducting a path analysis. “Sense of coherence was delineated as a factor contributing directly to stress perception.” This identified sense of coherence as well as ‘experience of social support’ “as resources that reduced reported stress and improved quality of life”. Reported stress was intensified by child variables such as additional handicaps and extent of impairment. Within the context of socialization theory, the findings suggest that intervention and directed counselling, “should firstly concentrate on boosting the resources that mothers need for coping and try to diminish the effect of stress intensifying factors as far as possible”. In addition, that “sense of coherence is related to mothers’ educational status”. Due to the limitations of the study, the author makes recommendations for further research, for example suggesting longitudinal data be obtained. 3.5 Research Article 3: Parental Resources, Parental Stress, and Socioemotional Development of Deaf and Hard of Hearing Children. (Hintermair, 2006). In deaf education, empowerment and resource orientation are important guidelines “as regards both the situation of the parents involved and the development of the deaf and hard of hearing children themselves”. The concept of empowerment ”embodies and conveys an attitude toward people in need” based on participation, self-responsibility, and codetermination. Resource orientation is “centered around how to translate an empowerment-oriented attitude into psychosocial and educational practice”. The author recommends combining “research on parental experience with deafness and research on the socioemotional development of the children” and studying this “in the context of resource availability” for deriving benefit from both theory and practice. The research involved examined “the correlation between parental resources, sociodemographic variables, parental stress experience, and child socioemotional problems by way of a path analysis model”. It is therefore an exploratory study. 213 parents (both mothers and fathers) of deaf and hard of hearing children were questioned using an array of questionnaires. These included Parent Stress Index, and Strength and Difficulties Quesionnaires. The results showed that “high parental stress is associated with frequent socioemotional problems in the children, thus emphasizing the importance of a resource-oriented consulting and support strategy in early intervention, because parental access to personal and social resources is associated with significantly lower stress experience.” A resource-oriented approach to deaf education is therefore considered enormously helpful for child development. The results are said to confirm two things: Parents with additionally handicapped children are especially stressed “The child’s communicative competence makes for a more sound prediction than its linguistic medium.” For pedagogical practice, the findings suggest contributing “to the parents’ psychological empowerment by giving advice and support… and parents must be assisted in restructuring or expanding their network contacts”. A limitation of the study is acknowledged by mentioning that additional empirical data is needed, for example to “explore the possibility that an increased auditive connection to and inclusion in the world helps children with both orientation and self-regulation”. The difficulty with regard to this target group is mentioned but also the importance of obtaining a more representative sample of the population i.e. more participants. Several recommendations are also made for further research such as studying specific parental competence. 4. Direction and Implications 4.1 Directions and Implications for Clinical Practice/Role of Advanced Practice Nurse The advanced practice nurse, dealing with deaf children and their parents, needs to be well acquainted first and foremost with the physiological facts about the hearing process and hearing loss. Nowadays, it is not uncommon for a sensorineural hearing loss to be identified much earlier in a child than it was previously (Edwards, 2007, p.23). When a deaf child is confirmed or brought into care, the nurse’s role is to obtain details of the patient’s medical history of hearing loss so that appropriate developmental support can be given. Young babies especially require much greater care as they seek attention from and depend greater on their mothers. Many of them also have additional related health and socio-emotional problems. So the sooner a diagnosis can be made the better because otherwise speech and language development is held back in the child. Moreover, deaf children are a low incidence but highly vulnerable group. Also, with deaf patients, special procedures are required for obtaining consent as “the entire consent process may need to be in writing” (Polit, 2007) whereas such physical impairment may not enable the participants to read or write. The arrangement of various support structures for the child and his/her family will need to be made, including a therapist in case of child trauma. When a diagnosis of hearing loss in a child is confirmed, parental stress is likely to be very high at this time, which needs to be controlled. Thereafter, they will be seeking for as much information, advice and support as possible. “Parents may need help to empower themselves and avoid a perception of helplessness (Edwards, 2007, p.24). So the nurse will need to assist in implementing the family coping strategies. The services of an interpreter may also be necessary as an invaluable aid for communicating between the three i.e. the deaf child, parents and nurse. This also ensures the communications is both safe and effective (Steinberg, 2006). The deaf community have been given legal rights, but the parents may not be fully aware of these and the hospital may be reluctant to provide them on cost grounds. So the nurse must make sure that they are made aware and avail themselves of whatever provisions are necessary. Means must be devised for facilitating access to quality support services for deaf children. Aside from the health related problems, the nurse must advise parents on the choices of communication methods available for communicating with their deaf child, not restricted to sign language, and in developing these. And, if the child is old enough to be in formal education, there will need to be advice on educational development options. In the absence of access to specialist centres for the deaf, the educational environment can be adapted to make it acoustically favorable and by using assistive listening devices thereby facilitating academic development. So, in places where specialist services for the deaf are unavailable, greater collaboration will be required from the various existing service providers that are available so as to establish an effective strategy for catering to deaf children and their families. The nurse can assist in coordinating such an effort. 4.2 Directions and Implications for Evidenced Based Nursing Research Evidenced based nursing research is already well informed of psychological approaches to dealing with stress and guilt upon knowing one’s child is deaf as well as the stages of psychological development of a deaf child. These approaches are for individual coping strategies, and do not consider the family unit as a whole and its impact on the deaf child, and vice versa. After all, an emphasis on the family unit is one of the most important aspects of nursing. But the situation is changing as the application of systems theory and the influence of family therapy are playing a major role in the greater ‘interactional’ thinking of nurses in relation to family nursing practice. (Friedman, 2002) Family stress theory is thus useful in this regard to help manage stress. Further, an understanding of family perception helps to understand the underlying thinking and justification in how parents cope with a deaf child. The parents’ ‘sense of coherence must be maintained as they will be the primary carers of the child. Assisting them through a resource oriented approach will not only help them in establishing the support network but it will also ultimately benefit the deaf child’s physical, socioemotional, educational and psychological development. Such concepts mentioned above therefore have important implications for furthering evidenced based nursing research. 5. Conclusion Families coping with a deaf child are a low-incidence underserved population. And, as a result of communicative difficulties, the child is very vulnerable and potentially delimited in his/her future development. Great strides have been made in diagnosis of deafness, assisting in stress control measures, and providing limited services for the deaf. However, evidenced based nursing research is still maturing in promoting interactional thinking in nurses, dealing with the impact of family perception, assisting families in maintaining a sense of coherence, and conducting a resource oriented approach to help the families cope. References Adams, John W. (1997). You and your deaf child. Gallaudet University Press. ASLHA. (2009). The Prevalence and Incidence of Hearing Loss in Children. American Speech-Language-Hearing Association. Retrieved July 6, 2009 from: http://www.asha.org/public/hearing/disorders/children.htm. Chandler, T. (2001). The deaf child in hospital. Paediatric Nursing. Vol. 13, No. 5, pp. 37-42. CHS. (1998). Fast Facts About Hearing Loss: What are the statistics on hearing loss? Vibes. Canadian Hearing Society Magazine. April, 1998. DfES. (2003). Developing Early Intervention/Support Services for Deaf Children and their Families. Department for Education and Skills (UK). Edwards, Lindsey. (2007). 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