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Reducing the Risk of Psychosocial Problems for Children Who Are Deaf and Their ParentsBy Anne TothAbstractThis research was designed to address the psychosocial problems that students of a school for the Deaf and their parents were experiencing as evidenced by behaviours of low self-esteem in the children and high stress in the parents. Using a pre-test/post-test design, children who are Deaf and their parents were studied. Based on needs assessed in the pre-implementation survey, an implementation plan was developed using the resources of the school, parents, and community. Aimed at increasing awareness, attendance, use, and active involvement of children who are Deaf and their parents in programs that develop social communication skills, post-implementation survey data shows a 10% increase in all four areas. The research concluded that—to the extent change was evidenced in the
reduction of reports of child abuse, expressed feelings of depression or anger,
and self-harm in the children studied—when tested for levels of self-esteem
and stress, both children and parents showed an increase in scores in the normal
range. Given the support received by the parents, school, residence, and
resource programs to improve social communication skills, the way in which
problems have been solved augurs well for the psychosocial health of children
who are Deaf and their parents.
This research was initiated out of concern that students in a school for the Deaf and their parents were experiencing psycho-social problems in terms of child self-esteem and parental stress. Children who are accepted for admission into the school are considered on the basis of an audiological deficit. The school is, however, aware that the use of American Sign Language (ASL) and involvement in the larger community of deaf people represents an important differentiation between those who are audiologically disabled (deaf) and those who consider themselves not disabled but rather, members of a linguistic and cultural minority (Deaf) (Hindley, et al., 1994; Padden and Humphries, 1988). Though admission criteria for the school requires an audiological deficit, consideration is also given to the child in the context of their family and personal perception of their identity as a person who is Deaf. While this differentiation is subtle, the identification of the child as being "deaf" or "Deaf" has significance in terms of how the child will be able to have his or her needs met, the esteem in which he or she will hold himself or herself, and the stress the parents will feel in terms of being able to help their child negotiate the developmental and social milestones of his or her life. With communication being central for this activity, the issue of how that communication will be accomplished bears weight. Should the child be able to make use of assistive devices and speech reading, the parents may choose to send their child to a mainstream school and the child may come to identify with the hearing and audiologically deaf. Should the child be exposed to other Deaf adults and children who use a signed language and find that the visual and gestural means of communication holds meaning and facility for them, the parents may choose to send their child to a school for the Deaf and the child may come to identify with others who are linguistically and culturally Deaf. For children and parents, the effort to arrive at one or the other identification may take many trials and many years; for the purpose of understanding the relevance of this issue to the present report, the differentiation of "deaf" versus "Deaf" serves to provide a foundation for discerning the complex psychosocial issues affecting children who are Deaf and their parents. To provide some background for this research project, it should be noted that over a three-year period at the school for the Deaf in which the writer works, children had been observed having difficulty resolving problems with peers, teachers, residence counsellors, and parents. When children disclosed abuse, expressed feelings of depression or anger, and attempted suicide, referral for counselling and protective services occurred. While requests for service typically identified the child as the one bearing the problem, social work services, based on systems theory, took another approach. That is, the individual student, family, school, and residence were considered to be parts that intrinsically affected each other (Hern, 1979; Pincus and Minahan, 1973). Expressing their own frustration, parents of students had spoken out about the special needs of their children and the desire to improve communication in the home, solve problems, and deal with issues of isolation related to being Deaf in a hearing world. Scales were administered to students (self-esteem measures) and their parents (stress-level measures) who had requested intervention, protection, and counselling. The results provided evidence of low self-esteem in children and high stress levels in parents.
Documentation of the problem was collected from information given by children
and parents, and observations recorded by school staff. Records kept by the
school were reviewed and showed that children and parents had accessed help to
deal with problems of parent-child communication, and showed concern for the
child's mental health in relation to depression, anger, and actual or
contemplated harm to self or others. Specifically, over a period of three years,
statistics indicated that of the 96 students and their parents who were eligible
to receive services, an average of 31 students and parents per month received
counselling, support, and referral services. School records also indicated 13
incidents when child welfare concerns prompted referrals to child protection
authorities (Children's Aid Society and police). From the investigations that
followed, nine families received services to ameliorate the problems between the
child and parents. Out of 12 students who were referred for services due to
self-harm statements or harm to self or others, 1 student committed suicide in
his home.
The cause for the psychosocial problems was difficult to isolate. Evidenced by behaviours of low self-esteem in children and high stress levels in parents, the problem was approached by comparing what had been identified at the school with the information given by the literature about common psychosocial problems among children who are Deaf and their parents. Based on what is known about the importance of communication in family functioning, the literature shows how feelings of denial and shame can contribute to difficulty in accepting and adjusting to disability (Desselle, 1994; Jones, 1995; Koester and Meadow-Orlans, 1990; Watson, Henggeler and Whelan, 1990). Denial of a hearing loss and the designation of a handicap may lead to problems in under or over-involvement of parents and peers that have implications for the emotional and social functioning of the child (Backenroth, 1993; Hadadian and Rose, 1991; Krauss, 1993). Toth (2000) explored the barriers perceived by parents related to communicating and solving problems with their children who are Deaf and explored how educational supports were appreciated. Based on a subsequent needs assessment that included a review of school records, face-to-face interviews, and the completion of Gresham and Elliott (1990) social skills questionnaires with children who are Deaf, their parents, and teachers, data obtained supported the anecdotal reports received from the same group of participants in its annual Individual Education Plan (IEP) meetings (Toth, 2000). The research concluded that issues of frustration and shame that erupt when the child cannot receive or produce the language of the parent and the majority population but must communicate through a gestural/visual language, such as sign language, were perceived as obstacles to effective communication between parent and child (Jacobs, 1989; Ormerod and Huebner, 1988). In that only 10% of the population can be expected to be congenitally deaf (Sacks, 1990) and that at least 90% of deaf children have hearing parents (Carver, 1989; Desselle, 1994; Drasgow, 1998; Padden and Humphries, 1988; Ritter-Brinton and Stewart, 1992), parents may feel isolated in terms of being able to relate to other parents in their community and uncomfortable in attending sign language courses with strangers in another community. Because sign language may not be the first language of either parent or child (Cerney, 1995; Drasgow, 1998), the majority of parents will have to learn sign language as their children are learning the language. Heightened perceptions that their children are not normal and that the acquisition of another language is a daunting task may pose further barriers to an already compromised communication system.
As difficulties in communication go unresolved, a negative perception of deafness (SKI-HI Institute, 1996) and maladaptive behaviour may raise levels of stress and further diminish the family's ability to nurture healthy self-esteem and reduce stress through constructive problem solving (Desselle, 1994; Jones, 1995; Pisterman, et al., 1992). Though one could say that deafness is an invisible disability (Hadadian and Rose, 1991), sign language, by its visibility, marks the user. Seeking ways to cope with the stigma of disability, parents may reject sign language training and limit their child to only speech training or the use of assistive devices for the purpose of communication (Grimes and Prickett, 1988). Observed in the literature, the stress associated with raising a child who has a handicap and who requires the adaptation of not only the environment, but of the abilities of their caretakers to communicate and solve problems, plays powerfully against the normal healthy development of relationships between children and their parents (Lederberg, 1993; McBride, 1989; Meadows-Orlans, 1994; Preston, 1995; Sexton, et al., 1992). Not only may the self-esteem of children be affected but family functioning may also be influenced by perceptions of its members' inability to communicate in meaningful ways (Lane, 1988; Vaccari and Marschark, 1997; Watson, Henggeler, and Whelan, 1990). Communication strategies between parents and their children who are Deaf, therefore, may include the use of sign language and an adult Deaf role model, but the use of technical devices, verbal and written English, speech-reading, and interpretation, may also be used by families to deal with this challenge (Calderon and Greenberg, 1993; Meadow-Orlans, Mertens, et al., 1997; Schloss and Smith, 1990). In addition to concerns about communication strategies between parent and child, the social maladjustment of deaf children in relation to hearing children in the same family has been compared to general population norms and found to be high (Hindley, et al., 1994; McEntee, 1991; Vostanis, et al., 1997). Similarly, problems in the psychosocial functioning of children who are deaf have shown evidence of low self-esteem, depression, and self-harm (Backenroth, 1993; Hindley, et al., 1994; Knutson and Lansing, 1990; Sam and Wright, 1988; Watt and Davis, 1991). The work of Manfredi (1993) and Lederberg and Mobley (1990) concerning the psychological impacts of having a child with a disability, specifically deafness, provides insight about the need for support and counselling. While communication and interpersonal intimacy are essential ingredients for maintaining the mental health of the child (Grimes and Prickett, 1988; Hojat, 1989; Lederberg, 1993), the psychological effect on parents related to their child being handicapped through hearing loss and deafness cannot be ignored (McKellin, 1995; Vaccari and Marschark, 1997). Though sign language instruction and social work counselling cannot on their own eliminate this, the incentive to use supports may relate to what Bodner-Johnson (1991) and Desselle (1994) have stressed in terms of parents demonstrating sincerity in finding a way to meaningfully communicate with their child. Communication between parents and their children can be expected to be
difficult from time to time. Nevertheless, when there is an additional barrier
to communication, such as that produced by deafness, the ability to solve
problems may also be handicapped (Knutson and Lansing, 1990; Yachnik, 1986)
resulting in dysfunction in parenting and social relationships (Pearce, 1993;
Wallander, Pitt, and Mellins, 1990).
This research project sought to address the psychosocial problems evidenced by behaviours of low self-esteem in children and high stress levels in parents, and to implement a strategy for healthy problem solving and improved communication. To the extent that change was sought in the reduction of reports of child abuse, feelings of depression or anger, and self-harm in the children studied when tested for levels of self-esteem, children were expected to show an increase in the number of scores in the normal range, and parents were expected to report stress scores in the normal range, based on standardized scales. Put in the perspective of a group of 96 students (kindergarten through senior high school) and their parents—who were eligible to receive social skills training programs through this school and were surveyed for the needs assessment—the potential number of participants could have been 237. Consistent with the findings of others that the response rate of data collection instruments tends to be less than 100% (Gall, Borg, and Gall, 1996), of the 40 parents who voiced a willingness for their children to be involved in a program, only 28 accepted the invitation to complete questionnaires despite follow-up letters, phone calls, and offers for individual telephone or home interviews. While this smaller group may indeed have been more motivated to utilize programs for their children, what resulted was that 14 parents and 14 children agreed to participate in the proposed programs.
Based on the needs assessment that included exploratory group work with the children and consultation with a research project team composed of school administrators, teachers, residence counsellors, and resource staff, support was received for the pursuit of a program that would address identified concerns and link with what the parents themselves said they wanted to be able to teach their children. Through the use of existing positive relationships, the potential was seen for involving children in the meaningful application, in every part of their lives, of the social skills they needed to learn. In an effort to gain insight on the effect of the intervention introduced, a pre-test/post-test design was used. With the benefit of standardized measures, pre-tests and post-tests were administered to determine student self-esteem and parental stress. The children were tested using the Self-Esteem Index (SEI) (Brown and Alexander, 1991); the parents were tested using the Parenting Stress Index (PSI) (Abidin, 1995). Confidentiality was respected as outcomes of this research project were determined and measured. Supported by the literature, a social communications skills program was devised (Henderson and Hendershott, 1991; Toth, 2000). Serving as a bridge between the worlds of the school and the home, the Deaf and the hearing, the child and the parent, this program was created to provide systemic training and support for healthy relationships. Consisting of individual and group work with students, parents, teachers, and residence counsellors, topics for discussion focused on the development of healthy problem solving and social communication skills. Handouts based on the work of Gajewski and Mayo (1989) were used to produce worksheets and homework for the students between sessions that spanned three, 8-week blocks across an 8-month period. Copied with the same materials, parents, teachers, and residence counsellors were instructed to use the materials as a reference for their work with the students and to provide feedback to the writer that could be used to further teach students and support parents and residence counsellors. With the goal of effecting a change such that, when tested for levels of self-esteem and stress, both children and parents would show an increase in the number of scores in the normal range, this systemic approach served well to inform and direct the implementation plan. Recognizing that each child and parent had different needs and abilities, strategies were tailored to overcome the specific barriers of communication and problem solving identified between them (Desselle, 1994). Sessions with the writer were used as a base for assessment, teaching social communication skills, and addressing psycho-social problems as they arose with the children and those who cared for them. To this end, and recommended by authorities in the field of deafness, programs were built on the strength of existing communication tools, including the use of technical devices and interpretation services, and the use of signed, written, and verbalized language (Calderon and Greenberg, 1993). The inclusion of staff who worked in specialized behaviour support programs—a summer computer camp, and a Deaf Mentor program—was seen as a viable means of accomplishing this goal outside of regular school hours. Discussed with the parents and students, agreement was reached about a home program (i.e., weekly handouts sent to the child and parent in the home) that they could do at their own pace through the summer vacation period. Sanctioned by the school's program director and principal, the handouts were shared with the staff of these collateral programs and the problem solving strategy was set in motion. To implement this program, both parents and staff agreed to reinforce what the children were learning in group or in individual work with this social worker. Accepting copies of lessons used and homework given, parents and staff who had contact with the child, received training on the use of these materials and applied the ideas the materials generated to the interactions they had with the child. Consistent with what the child was learning in his social communication skills program, this addition to the implementation plan served to not only reinforce the child's learning but to also expand the circle of support for healthy functioning with the significant adults in the child's life. Support of children who are Deaf was also accomplished through the use of individual, peer group, parental, and familial counselling offered in the context of the school and family home. Agreeing with Vaccari and Marschark (1997) that the issue of communication is central to all work between children who are Deaf and their parents, the use of programs already proven effective, such as the sign language instruction and the Deaf Mentor programs offered through the school, was encouraged. Taking a cue from the work of Calderon and Greenberg (1993), attention was directed to the personal or family issues of parents in order to explore the problem of attendance at information meetings, workshops, or counselling sessions. While the intent to participate may have been sincere, ancillary concerns, such as the marital relationship, care of other children in the home, financial, or employment pressures were found to be factors contributing to this problem. In addition to the services that were provided directly by school staff and
programs, the writer worked closely with the school's program manager, resource,
school and residential staff such that social work services were engaged
co-operatively to help parents access community services. While it became clear
that gaps in community services to children who are Deaf and their parents were
a reality that could not be resolved simply by implementing a school social
communication skills program, making connections with resources, educating, and
lobbying were, nevertheless, worthwhile exercises.
In an effort to reduce the risk of psycho-social problems in children who are Deaf a strategy for healthy problem solving was implemented. Data collected at the onset and at the end of the implementation period was used to record evidence of disclosure of abuse, reports by the school to child welfare authorities relative to concerns for child abuse, expression of feelings of depression and anger, and incidents of harm to self or others, as well as to identify participation of parents and children in group sessions. With respect to reports and referrals for students having psychosocial problems, such as low self-esteem and depression, a decline from an average of 31 referrals per month over the past 3 years to an average of 23 referrals per month over the past 8 months was noted. Of 12 students who were referred for services due to self-harm statements or harm to self or others in the past 3 years, only 2 students were referred in the past 8 months as a result of threatening to harm themselves. No student attempted, or committed, suicide during this period. Furthermore, though it was necessary to make 13 reports to child protective services over the past 3 years, only 2 situations warranted reporting to child protective services during the past 8 months of implementation. The results from the pre-implementation responses of 14 parents who completed the PSI (Abidin, 1995) and 14 children who completed the SEI (Brown and Alexander, 1991) were compared with the results of the post-implementation scales. For the parents participating in this research project, pre-implementation scores indicated the presence of stress with 9 parents obtaining scores in the above normal level and 5 parents scoring at the normal level. No parents scored in the below normal range. This was in comparison to the post-implementation response that found 7 parents scoring within the above normal level and 7 registering normal levels of stress on the same scales. With respect to the scores from the self-esteem scales, the SEI (Brown and Alexander, 1991) provided an indicator of self-esteem as reported by 14 students ranging in age from 10 to 18 years of age. Based on these scales, the estimate of overall self-esteem resulted in 7 students scoring in the normal range and 7 scoring in the below-normal range. This was in contrast with the post-implementation responses that found 3 students scoring in the above normal range, 9 students scoring in the normal range, and 2 students scoring in the below normal range.
As a final method to elicit feedback, participants were asked to respond to a post-implementation questionnaire. While this activity did not represent a specific outcome, the response received was considered reflective of the overall success or failure of the research project in the eyes of the participants. What became clear was that participants felt that the mutual agreement entered into by the writer, parents, children, and school had been honoured. Facilitated by communication through telephone/TTY contact, written feedback in the form of letters and newsletter articles, and face-to-face meetings as requested and scheduled, a working relationship had been built. More than just attention to the accomplishment of research treatment objectives, parents and students expressed a desire to be solving problems in such a way that they would be feeling good about themselves and dealing with the stress in their lives without hurting themselves or each other. Based on their responses to the questionnaire, 10 of the 14 parents felt that participation in the social communication skills program had had a positive effect on themselves and their children; 2 felt the program had had a positive effect on their child while they, as parents, had stayed about the same. Only 1 of the parents felt that participation had neither positively nor negatively affected them or their child. From the responses of the children, a tally showed that all of the students felt that their participation in the program had helped them (to a greater or lesser degree) solve problems with their parents, teachers, and peers. The preceding provided an overview of the difficulties addressed, innovations
applied, and problem-solving methods implemented in an effort to reduce the risk
of psychosocial problems in children who are Deaf. As a result, the goal of this
research project was achieved. To the extent that change was evidenced in the
reduction of reports of child abuse, feelings of depression or anger, and
self-harm in the children studied, when tested for levels of self-esteem and
stress both children and parents showed an increase in scores in the normal
range.
While it was outside of the purview of this research project to create all support services recommended by the stakeholders, by eliciting data, supporting what was working well, and drawing attention to that which still needed development, the research project was seen to have achieved its goal and to have begun to inform and direct future problem solving. Arising from the implementation of this research project, parents became informed about support for themselves and counsel for their children relative to issues of stress and self-esteem that were available (or needed) in signed or verbal language through the school and in the community. Along with data collected from the pre-implementation needs assessment and representatives of the stakeholders—children, parents, and staff—the writer worked to facilitate consensus on the ways in which selected priorities could be achieved. Though the problems of stress in parents of Deaf children and low self-esteem
in children who are Deaf may not have been solved by the implementation of the
above solution strategies, to the extent that change was evidenced in the
reduction of reports of child abuse, feelings of depression or anger, and harm
to self or others in the children studied, the risk of psychosocial problems was
considered to have been reduced. The need for further psychosocial assessment
and treatment for children who are Deaf and their parents remains a challenge
for future research projects.
In reviewing feedback given by those who participated in the research project, it has become evident that reducing the risk of psychosocial problems in children who are Deaf has no single solution. While making programs available that teach language and problem-solving skills, and that raise awareness about issues related to deafness has value, simple participation in those programs is not enough. As a result of addressing the problem from a system's perspective, it has become clear that concerted effort on the part of the parents and children, the support of other family members, teachers, peers, community services, and the use of counselling to resolve underlying mental health issues are equally important if change is to occur. To the extent that change has been noted in the reduction of reports of child abuse, feelings of depression or anger, and harm to self or others, it was found that both parents and children showed an increase in scores in the normal range when participants of this research project were tested for levels of stress and self-esteem. Though the circumstances that support and detract from every parent/child relationship may well be different, it is with an attitude of respect for all parents and children who find a way to successfully communicate—the problems and the solutions—that this research project concludes. Acknowledging the difficulty in securing community services for children who
are Deaf and their parents, the importance of the relationship between parent
and child was highlighted. Community services, no matter how developed, can
never—nor should they—replace the fundamental relationship between parent
and child. What has been learned in this research project speaks louder than
words to the importance of supporting children, parents, and other caregivers in
finding ways to communicate, to solve problems, and to feel good about
themselves. Only then can the risk of psychosocial problems in children who are
Deaf be reduced.
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