Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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Understanding and following guidance of a specialized
team for parents of hearing impaired children

Dr. Telma Flores Genaro Motti
Hospital de Reabilitação de Anomalias Craniofaciais, Universidade de São Paulo, Bauru, SP, Brazil
telmotti@centrinh o.usp.br

Dr. Maria Benedita Lima Pardo
Universidade Federal de Sergipe, Aracaju, SE, Brazil
mbpardo@infonet.com.br

Summary

The way diagnosis process is conducted is fundamental to help families accept the hearing impairment and to assume conducts for children rehabilitation. This work presents the results of an investigation on the influences of hearing impairment diagnosis, made by a specialized team, at the Center for Care of Hearing, Speech and Visual Disturbances (Cedalvi), of the Hospital for Rehabilitation of Craniofacial Anomalies (HRAC) of University of São Paulo (USP) in Bauru, SP, upon parental attitudes related to child rehabilitation and education. The results of a research on parent’s comprehension and receptivity to guidance for a process of evaluation and selection of a hearing aid, performed by an interdisciplinary team, are presented. Parents of 50 children below 7 years of age have been interviewed during the process and the recall three months later. Their answers to guidance about conducts towards the children were more frequent than those related to diagnosis, possibly because the greatest difficulties faced by parents were related to treatment and to their child behavior. At follow-up, there was no significant change on the importance assigned to the evaluation and guidance procedures. The answers of parents during the attendance and follow-up periods corroborated the understanding of guidance on hearing impairment and the type of assistance their child needed. However, they did not succeed in school and speech therapy assistance, once they depended on public resources and such services were only found in private offices. It has been noticed that parents understood and maintained guidance that had a practical use, performing them according to their possibilities.

1 – Implications of hearing impairment and the attendance at HRAC/USP

Hearing loss can be a serious problems related to children communication. Because they do not hear, they will not learn to speak naturally and will show some difficulties for the establishment of a relationship between spoken words and their representation; familiar and social relationships may also be disturbed.

Comprehension of parents on the deafness and rehabilitation process and the school is fundamental for the development of hearing impaired children, but the timing of diagnosis and the way this process is conducted also have a great significance on the child’s future. the families must understand the information received at the moment of diagnosis and assimilate the results of assessments, which allow the use of hearing residues through the use of hearing aids, is fundamental for the families to fulfill their roles,. Diagnosis is also important for the family itself, because it offers an opportunity to tell parents that deafness is not an obstacle for linguistic ability, that there are proposals for treatment and factors that interfere upon rehabilitation, like the resources that may trigger child development.

However, diagnosis perception provokes emotional processes in parents too, including the denial, as hearing impairment is invisible, rejection of results and the search for different professionals and specialized services, with repeated examinations, assessments, and guidance, presenting complaints about the services and hoping for mare satisfying opinions.

A number of aspects are involved in the diagnosis of hearing impairment: technical accuracy, experience and ability in conducting procedures and guidance to family, indication for needed resources and fitting of hearing aids. These factors point to the convenience of the action of an interdisciplinary team, where professionals are attentive to the individual, environment and family, and get the best profit of this opportunity to play their role as educators, directing families to impel child development.

HRAC/USP assists children and adults with hearing loss and their families following such philosophy. Cedalvi is one of the departments performing diagnosis, indication and fitting of hearing aids, and concentrates the greatest number of attendance, 100 cases a day in the average, of individuals of all ages and coming from all over the country. Attendance is performed in an outpatient basis and is previously scheduled, considering the distance of the residence, age and conditions of each case.

The first attendance routine for children comprises a sequence of 16 procedures, distributed in 5 days for accomplishment of all assessments, complete audiological diagnosis and fitting of or directions on the hearing aid. These procedures are: Preliminary Procedures (New Patients Meeting and Initial Interview at the Social Worker), Audiological Diagnosis Procedure (Anamnesis, Otolaryngologic Exam, Imitanciometry, VRA, Audiometry), Procedure for hearing aid Indication (ear impression and Tests), Complementary Procedures that are performed simultaneously to initial stages (Psychology Interview, Nutritional Attendance, Pediatric Exam), Guidance Groups in Psychology and Audiology and, as a Final Procedure, a Final Interview with the Social Worker.

The variety and amount of procedures posed to families and the interdisciplinary team are subjected to professional characteristics and to previously established timing for each activity. Before these factors and the significance of timing of diagnosis for the family and rehabilitation of the hearing impaired child, a study has been performed to assess such routine. First of all, procedures were described based on interviews with professionals and, by interviews with parents, receptivity, comprehension and following of offered instructions were assessed. This work aimed at showing the results of the study on the influence of a hearing impairment diagnosis made by a specialized team upon parental attitudes related to child rehabilitation and education.

2 – Methods

Procedures adopted by Cedalvi have been reported for assessment and/or directions according to reports by professionals from different specialties. Twenty nine professionals took part in the study, representing 83% of the team performing the sixteen routine procedures for diagnosis of hearing impairment in children; 36 interviews were applied to them. Quantitative and qualitative analysis were established along the research, according to the significance of data found.

After this, understanding and acceptance of offered directions by 50 parents of children under 7 years of age submitted to routine procedure were assessed. The main informer (generally the mother) was the same in all cases. Families came from all country regions, the great majority from low socioeconomic classes and with a low educational level. Most mothers and fathers were between 25 and 44 years old; in routine attendance, 28 children had their mothers as a companion, 18 had mothers and fathers, two had their fathers and two their grandparents.

Semi-structured interviews with parents were made at three moments: first, at the beginning of routine, during procedures before audiological evaluation; at a second moment, after these evaluations; and at a third moment, after hearing aid tests. A follow-up questionnaire was answered when the child returned to Cedalvi, nearly three months after the first routine. The same questionnaire was posted to parents that had not returned; they answered and posted it back.

Parents' answers were arranged for each stage of data collection and analysis was performed of the content of the answers, grouped according to some themes, and categorized.

3 – Results

            3.1 – About diagnosis procedures

Analysis of the descriptions of procedures based on interviews with professionals allowed the identification of actions directed to children, to their parents and to the procedure itself. According to attendance where the actions were reported, it was observed that there were different views related to children or to their families, according to the objectives that professionals wanted to meet, through examination of the child, the information collected or directions to parents. Results also showed that the team collected information on the child, summing up life conditions, environment and health conditions, which allowed them to offer guidance to the family, aiming an integral focus upon the child, not only upon hearing deficiency.

Instructions offered to parents addressed the conducts that they should adopt in relation to their child, resources offered by the heaqring aid, family and family life, attendances needed and the resources required in these attendances. As for routine, in most attendances, professionals provided parents with information on the attendance already made or to be made, so that, besides these results, they might understand the diagnosis process and the significance of perceiving the child as a whole.

In most procedures, professionals also assessed and interfered with the difficulties showed by parents, especially those associated to expectations about diagnosis and prognosis of the case as child sociability, communication possibilities, treatment resources, besides anxiety about the causes of the problem. Professional interventions aimed at calming parents, so that they could take part in attendance and understand attendance and guidance. At the end of routine attendance, guidance was provided to allow the parents to have more suitable expectations about their child’s possibilities and the effort professionals were employing to get the best profit of such possibilities.

Professionals also reported a search for information in clinic dossier about the origin of impairment, parent claims and child development, besides the results and previous guidance. Registration of obtained results has been reported in nearly all attendances, aiming at registration of procedures and results, allowing team access to the information and warranting a suitable attendance.

3.2 – About parent receptivity to attendance

Parent receptivity has been assessed by questions that aimed at identification of performed attendance, their opinion about them, difficulties and ease felt and the significance of attendance.

Parents were argued at the second and third interviews about the attendance performed, aiming at verifying if they could identify the procedures. The 49 responses assessed showed that all attendances were mentioned, but parents could not report them and indicated in their answers fewer attendances that had really happened. The attendances most reported at the second and third interviews indicated their significance for parents, according to the moment they were performed, that is, at the beginning of routine for audiological assessment (reported in 41 responses), and at the end for the hearing aid tests (48 responses). According to the responses at these two moments, hearing aid tests were the most remembered attendances, followed by Audiometry/VRA, satisfying the aim of routine.

Pediatric examination, although not related to diagnosis, was reported many times (44 responses), probably because this procedure includes the cause of hearing impairment, a reason of great anxiety for parents. The next most reported attendance (41 responses) was the Group for Psychological Guidance, probably because it is an attendance directed to parents. If, at this moment, parents already had satisfied their need to confirm child diagnosis and perceived the possibilities provided by the hearing aid, they could change the focus of their attention toward themselves or, if unsatisfied, get some support during these attendances.

Some attendances were reported only at the third interview, because they had not happened before, like hearing aid tests and the final interview with the Social Worker. However, most attendances were less reported in the interview at the end of the routine, with a reduced total number of responses related to the second interview.

Parents also mentioned the attendances that were not part of the routine: Neurology (10), Genetics (8), Ophthalmology (6), Physiotherapy and Cardiology (1). These responses emphasize the significance of the action of a specialized team, once hearing impairment may be just a manifestation of a syndrome, which makes diagnosis more complex.

In general, the results showed that, although the greatest concern of parents was related to diagnosis results and child performance with the hearing aid, they were attentive to all procedures.

3.2.1 – Parents´ opinion about the procedures

Parent’s responses about what they thought about attendance allowed identification of a majority of positive comments. Forty eight parents at the second interview and 44 parents at the third answered that they liked and praised the attendance. Comments were made about the attention, ability, and performance of professionals, routine planning and the directions they received about their child. Some negative aspects parents added at the third interview were fatigue (2), unsatisfying behavior of the child that made the attendance longer (2), physical settings (1) and delay (1). Thus, maybe for the previous question, when there was a decrease in responses at the third interview about the attendances performed, parents had been affected by satisfaction with results and fatigue, after five days of attendance.

To assess the difficulty or ease of routine, parents were questioned about the attendance they considered to be the most difficult and the easiest. At the second interview, 15 parents pointed the impression (6), anamnesis and audiometry /VRA (3), ORL (2) and interview with the psychologist (1) as the most difficult. At the third interview, 25 parents pointed the tests (17), audiometry/VRA (3), impression and Audiology Guiding Group (2), ENT (1). Difficulties were mostly ascribed to child behavior.

As the easiest attendance, at the second interview, they pointed to Nutrition (7), audiometry/VRA (4), pediatric examination and interview with the psychologist (3), ENT and Psychology Guiding Group (1). At the third interview, 21 attendances were pointed: Psychology Guiding Group (9), interview with psychologist (4), pediatric examination (3), audiometry/VRA, hearing aid test and final interview with Social Worker (1). Reasons presented were often related to the attendance itself: easy instructions and questions by jokes, easy child behavior, and performance of professionals. Some parents considered all attendances easy, and only three of them did not know how to answer the question.

3.2.2 – Significance of Attendances at follow-up

In follow-up attendance, in order to assess how parents remembered the attendances performed during diagnosis routine, four types of procedures (hearing examinations, hearing aid tests, Audiology and Psychology Guidance) were indicated, and parents were asked to signal those which they considered significant to deal with their child’s hearing impairment.

From the 35 parents that indicated “psychological guidance”, 33 referred to explanations about conduct, education, and resources necessary to child development, life at home, and said that the attendance helped them to accept and deal with the deficiency in their familiar environment. Thirty four other parents indicated “hearing examinations”, mostly justified as a function of the results, followed by the quality of attendance and child cooperative behavior. About hearing aid tests, 34 parents considered them to be significant and made comments about results, with satisfaction, dissatisfaction, saying that the child did not respond or was using an unsuitable hearing aid. The way the attendance was performed was also commented: “ with no financial interest”, “easily for the child to allow the appliance to be fitted”. About audiological guidance, 30 parents indicated that they were important and told about the content: rehabilitation, child education, proper use of hearing aid and instructions about hearing impairment.

3.3 – Parental understanding about routine information

Besides the receptivity of parents towards routine attendance for diagnosis and hearing aid selection, we assessed the way parents understood the new information, the diagnosis of hearing impairment and the conducts related to children.

As for hearing deficiency diagnosis at the first interview, from 46 parents that stated that they knew what her child had, 42 declared hearing problems or lack of hearing. Answers about previous examinations showed that 45 children had already been examined. From the 4 parents that did not know what their child had, three had already been examined, and from the 46 parents that answered that they knew what the child had, four had not been examined yet. Thus, most children already had some kind of diagnosis, and almost all parents acknowledged their child’s hearing impairment, suggesting that instructions from other services had not been satisfactory or that they still had difficulties in accepting the deficiency, seeking for new assessments.

At the second interview, after audiological assessment, to verify the understanding of information about diagnosis until that stage of the routine, parents were questioned if they knew the degree of child hearing impairment. Although 33 answers were affirmative, seven of them could not state the impairment. After this, as for the sounds child could hear, 23 parents declared environmental sounds, the other answers being negative.

Thus, although knowledge on the hearing possibilities of the child might be more important than the degree of impairment, when audiological assessment should be concluded, only 26 parents could state the degree of hearing loss of their children and 23 knew how to identify the sounds their child could hear.

Also with regard to the diagnosis of hearing impairment, the way parents perceived the guidance offered during attendance was verified. When questioned if they had received guidance at the second interview, 40 parents gave an affirmative answer, 49 at the third interview and 44 at the follow-up questionnaire. Affirmative answers were assessed, especially those referring to the diagnosis of hearing impairment and the results of assessments.

At the three moments, few parents mentioned the results of assessments performed earlier, and fewer at the follow-up. At the second interview, from the 40 parents that confirmed that they had received instructions, 10 reported instructions about the degree of hearing loss and audiological condition of the child, such as the best ear and which sounds the child heard. At the third interview, from 49 parents, 11 mentioned these instructions, while at the follow-up only 3 pointed these instructions from the 44 parents. These results show that, during routine, until the third interview, instructions about hearing impairment were more present to parents, but at the follow-up they showed less relevance.

Parental conduct towards the child was the way they could deal with behavior and communication, as well as attitudes and resources for rehabilitation and education, such as the use of hearing aids and therapeutic follow-up. The answers of parents that stated that they had received instruction and had been told about conducts are presented at Table I.

Table I – Parent’s responses about instructions offered during routine, related to conducts, at the second and third interviews and at the follow-up questionnaire.

Directions about conducts related to child behavior were referred to by 19 parents at the second interview; themes external to their homes, as familiar acceptance, were also mentioned. This type of response increased to 31 at the third interview and to 32 at the follow-up questionnaire, showing that instructions included all familiar context.

The next most remembered instructions were those about therapeutic and educational attendance mentioned by 13 parents at the second interview, 23 at the third and 29 at the follow-up questionnaire. Parent’s responses showed that, by speech therapy and school instructions, they noticed the significance of child stimulation at home and could use and create their own resources. An increase of reports about this guidance was observed at the third interview and at the follow-up questionnaire, as at this last moment parents were already applying them.

Another type of instruction mentioned by parents was the way they could communicate with the child. At the second interview, nine parents mentioned that they had received instructions about how to speak with their child; at the third interview, six parents mentioned such instructions; and at follow-up, 25 parents. These instructions were significant for parents to develop stimulation activities at home, reported as conduct instructions. At the follow-up, these instructions were mentioned much more times than at the second and third interviews; possibly because at the time of interviews they did not consider them as values but, during the period until follow-up, they were remembered and put into practice; thus, when they answered the questionnaire, they were more vivid and this is why they were mentioned.

Parents also mentioned instructions about the use and care of hearing aid and mold, as 9 parents at the second interview, increasing to 21 at the third one and back to 10 at follow-up mentioned them, the greatest number occurring at the third interview, when tests were finished. At follow-up, although they acknowledged the significance of hearing aid, parents still had not achieved it as, according to the socioeconomic level, they depended on public services and were subjected to difficulties to get access to such resource.

3.4 - Maintenance of Routine Instructions

At follow-up, it was investigated if parents maintained the instructions reported above and, as already mentioned, the great majority of parents confirmed they had received some instructions; the answers were analyzed as to the types of instructions, if referring to results of assessments or to conducts to be adopted (Figure 1).

Figure 1 – Answers from parents about directions offered during routine, at the second and third interviews and at follow-up questionnaire

In the answers of parents at the three moments, an increase was observed in the number of references to instructions about conducts towards the children, compared to answers about diagnosis. Possibly, although information about child diagnosis were significant for parents, the greatest difficulty they were faced to daily related to family life, behavior and treatment. This difficulty may be observed in several answers reporting an unsatisfying progress in attendance caused by child behavior. These behaviors may be justified by communicative flaws in adult-child relationship.

These factors justify the parents’ complaints and show professionals the types of instructions that may be best employed, i.e. those that facilitate the communication, although impaired by a language limitation, and allow avoidance of overprotective attitudes or even rejection.

4 – Final Comments

Actions reported by professionals about performed procedures showed that the contents complemented each other and the team aimed at capturing varied information about the child, his or her life conditions and family characteristics. The information asked was not restricted to hearing impairment, but professionals tried to know the children within their familiar and social context, so that they might offer needed resources to impel the development, regardless of the hearing condition.

Almost all parents showed satisfaction in their answers, praising the ability and performance of professionals and routine organization, which shows that the objectives are attained. The few negative aspects are factors that deserve studies and improvements; besides, the team may better perceive the anxiety from parents related to the cause of hearing impairment and try to help them, directing their efforts to resources and attendance that are necessary to child development. There must also be a thought about child’s attitudes, since a non-cooperative behavior exists in most statements of parents about difficult attendance, showing that behavior is very important for a good exploitation of attendance and may give origin to fatigue, one of the negative factors mentioned.

When psychological attendance was mentioned, it was observed that these professionals are prepared to reach parents, which allow us to imagine that the high spirit they show, as well as the possibility of sharing doubts and afflictions, facilitates the acceptance of instructions, especially those related to conducts toward the children.

It was observed that, at attendance, there was no significant change in the importance parents put upon assessments and tests and directions; thus, it is important that the routine maintains the present structure, giving priority to both kinds of procedures.

5 - Conclusions

The present work is part of a descriptive study that contributes to the possibility of exchanging experiences and reflections among professionals and services assisting hearing impaired people, for diagnosis and hearing aid selection. The aim was to publish the results of a judicious study that allowed combination of professional performance on different specialties and parent needs. This analysis allowed a conclusion about the convenience of a team action, where specialists add their knowledge and abilities, in a planned and concentrated routine. The contribution of different specialists facilitated the acceptance of deficiency of their children by parents. It was observed that they understood and maintained the instructions that showed a practical utility, using them according to their possibilities, that is, when they did not depend on external resources, thus having a direct influence on children development.

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