Volume 23, Issue 1 (Spring 2022)                   jrehab 2022, 23(1): 32-49 | Back to browse issues page


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Ashori M. Lived Experience of the Normal-Hearing Adolescents of Parents With Severe and Profound Hearing Impairment: A Qualitative Study With a Phenomenological Approach. jrehab 2022; 23 (1) :32-49
URL: http://rehabilitationj.uswr.ac.ir/article-1-2920-en.html
Department of Psychology and Education of People With Special Needs, Faculty of Education and Psychology, University of Isfahan, Isfahan, Iran. , m.ashori@edu.ui.ac.ir
Keywords: Hearing, Adolescent, Deaf, Parent
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Introduction
Normal-hearing children with hearing-impaired parents live in two different situations: the culture of normal-hearing and deaf people [1]. These children may sometimes be ignored and get too much attention [2]. Parents' hearing impairment can adversely affect their relationships with their children [3] and quality of life [4]. To this end, the study of the lived experience of these people is debatable [5]. It is even possible to distinguish between deaf parents who use sign language or spoken language [3]. Children's early language experience affects the development of their personalities and emotions [6]. Most normal-hearing adolescents of parents with hearing impairment act as translators or facilitators of family relationships [7]. Therefore, it is required to know what happens between them and their parents during their years of life [8].
Normal-hearing children of parents with hearing impairment form a particular group [9]. About 90% of parents with hearing impairment have normal-hearing children [10]. More precisely, about 10% of normal-hearing children have a parent with hearing impairment. Also, 5% have both parents with hearing impairment [11]. However, most research focuses on the lived experiences of normal-hearing parents with deaf children [12]. Therefore, very little research has been conducted on normal-hearing adolescents of deaf parents [13]. In addition, more than 90% of deaf parents want to have a normal-hearing child [9, 14]. Since normal-hearing children of parents are born with hearing impairments in deaf culture, they are also called invisible linguistic and cultural minorities in the deaf community [15]. The deaf community does not consist of a uniform group [16].
Hearing impairment may limit learning opportunities [17], and sometimes deafness reduces access to social information [18]. For this reason, the presence of a deaf member in the family affects the interaction of family members [19]. In a study, Suasin et al. [13] examined the lived experience of deaf parents of hearing children. The findings of this study reported six main categories of emotional differentiation, communication approaches, awareness development, formation of social relationships, values and beliefs, and coping with situations. The results of Buccino's research [1] indicate that the four main factors of relationship between hearing children and their deaf parents are sign language translation, communication, good feelings towards parents and the inverse role [20]. Since about 10% of deaf people marry deaf people, it is better for deaf people to learn sign language [21]. For instance, normal-hearing siblings who communicate with a normal-hearing member in their family via sign language have desirable relationships [22], play a supportive role [23], and have a positive effect on their cognitive, emotional, and social development [2425]. However, sometimes misconceptions are formed due to a lack of information in this area [26]. Recently, studies have been conducted on the lived experience of normal-hearing adolescents with hearing-impaired parents, which is the main objective of this study.
Materials and Methods 
In the current qualitative research, we used a phenomenological approach and a descriptive strategy according to the purpose and nature of the subject, i.e., the lived experience of normal-hearing adolescents of parents with hearing impairment (mother and father with hearing impairment). Participants were selected using the purposive sampling method among normal-hearing adolescents of parents with hearing impairment in schools in Isfahan City, Iran, in the academic year 2009-2010. To determine the sample size, the interview was used until the data saturation, and accordingly, the sample size included 10 people. The inclusion criteria were aged 15 to 19 years, 10th to 12th grade of education, living with parents with severe or profound hearing impairment, no congenital sensorineural problem, and volunteering to participate in the study. The exclusion criteria included any neurodevelopmental disorder, sensory impairment such as deafness and blindness, and a deaf sibling. 
In the current study, we used in-depth and semi-structured interviews through bilateral dialogue, and the participants' life experiences were examined this way. The interviews lasted between 56 and 80 minutes. Five participants were boys, and five were girls. The interviews were conducted in schools or libraries near the participants' residences. The purpose of the study was explained to all participants, and they were assured that their names and other information would be kept confidential. In addition, they were told that participation in this study is voluntary.
To gain the experiences of hearing adolescents with deaf parents about their lived experiences, semi-structured questions were presented, such as “describe your experiences of living with deaf parents”. If there were ambiguities in the answers or incomplete and short answers, more questions were asked to clarify the participant’s speech. The interviews were listened to several times, and the text was verbatim. The Colaizzi method was used to analyze the data. This method consists of seven steps: reading all the important descriptions and findings carefully, extracting important phrases and sentences related to the phenomenon, conceptualizing the extracted important sentences, arranging participants’ descriptions and common concepts into specific categories, and converting all ideas inferred to comprehensive and complete descriptions, converting complete descriptions of the phenomenon into a real summary and brief description, and final validation. To check dependability, which replaces validity and reliability, the indicators of credibility, verifiability and reliability were used. Confidence in the authenticity of any interview information indicates credibility. To verify the verifiability, the information of each interview was provided to the participants after analysis, and the necessary corrections were made based on their opinions. This way, bias was avoided, and the index of objectivity was observed in the research. The study data were registered as criteria for reliability, and the opinion of four psychologists and specialists of exceptional children with more than three years of work experience with deaf parents with hearing children was used. In this way, the main themes and subthemes were extracted.
Results
Table 1 presents the demographic characteristics of the study participants, such as age, gender, number of siblings, order of birth, educational level, and type of school.


Table 1 presents the demographic characteristics of the participants. First, their experiences were extracted from the interviews. Then the main and subcategories were identified through coding, the results of which are reported in Table 2


According to Table 2, the main categories of the lived experience of normal-hearing adolescents of deaf parents include 7 main categories and 38 subcategories, which are described below. The first major category of hearing experience of normal-hearing adolescents with deaf parents was parental acceptance. Participating adolescents attributed the acceptance rate of deaf parents to various factors. The sixth participant said: "if the parents are deaf, the conditions are special. I always like to see them and talk to them, with hints I do not remember how I learned." The second main category of participants' lived experience was cultural values. The third participant stated: "My deaf parents have groups that are all deaf. They support each other, and that is great for me. Before speaking, they use looking, facial communication, and certain hand gestures, and then talk to each other with gestures." The fifth participant said, "I have coped with this problem, and my parents do not have a problem with either my hearing brother or me. They have certain groups and cultures that are respectful."
The third main category of participants' lived experiences is the cycle of emotions. The second participant stated: "Sometimes it is very difficult for me to see the feeling of inadequacy in my parents or to realize that they do not believe in themselves. First, I did not tell anyone. I had a strange feeling of loneliness, and I was always waiting for it to improve. I did not deal with the issue so far, and I would like the situation to be better." The eighth participant said: "The words of those around me are due to the lack of understanding of my conditions and my parents' conditions, and these conversations cause them harassment. Sometimes my friends thought that my parents caused me to be miserable and thought I became miserable. These words show that they do not understand me at all." The fourth main category of participants' lived experience was social conditions. The seventh participant stated: "I look at the issue from a social point of view, but I think it is the same wrong attitude towards deaf people. I did not notice much change when my friends found out that my parents were deaf. Now, after a few years, I realize that we are slowly falling apart. Of course, I still do not know the exact reason; however, I think they do not know much about deafness."
The fifth main category of the lived experience of hearing adolescents with deaf parents was cognition and thinking. The fourth participant said: "Sometimes I wish some people were in my situation so they could understand my situation. It's unfortunate that one's parents are not so aware of this issue." The sixth main category of participants' lived experience was support networks. The tenth participant said: "Television has never had a program to find out how to deal with a deaf parent, where to take him to educate the family. The radio and television that people watch broadcast repetitive films 24 hours a. Why not make a movie about these families? The last main category of the lived experience of hearing adolescents with deaf parents was life challenges. The life challenges were significant for the participating adolescents. In this regard, the first participant said: "One cannot have a correct understanding of a subject unless one is involved. After all these years, I still do not know how to behave to avoid offending my parents."
Discussion and Conclusion 
This study investigated the lived experience of hearing adolescents of parents with hearing impairment. The findings of this study were categorized into 7 main categories (parents' acceptance, cultural values, cycle of emotions, social conditions, cognition and thinking, support networks, and life challenges) and 38 subcategories after thematic extraction and determination of categories. 
The present study's findings differed from the results of Foux's research [9] on the educational challenges of normal-hearing children of parents with hearing impairment and acting as translator, supportive, and protector in terms of main and subcategories. However, it was consistent with some subcategories, such as the desire to communicate with parents related to the first main category and cultural differences, respect for cultures, and awareness of cultural values and beliefs related to the first and second main category in the field of social experiences, culture, and language. The findings of Moore and Android [2] regarding the supportive and protective role and mediation of hearing children in relation to parents with hearing impairment were consistent with the sixth and seventh main and subcategories, i.e., supportive networks and life challenges. Of course, there are differences in the expression of phrases. For example, children point to their supportive and protective role; however, participants in the present study said that supportive resources do not support our parents and us well. Therefore, parents' expectations increase and our problems and concerns increase. The findings of the present study are consistent with the results of Buchino's [1] research, which stated that the lived experience of hearing children of deaf parents includes four main factors of translating sign language or translating it into speech, communication, feelings towards parents, and inverse role. The two first factors and the fourth factor are consistent with the main and subcategories, such as the desire to communicate with parents from the first main category, the second main category or cultural values, and the sixth main category or supportive networks. The third factor is consistent with the third main category of the present study, titled the cycle of emotions.
The results of the study conducted by Singleton and Title [17] indicated that the lived experience of hearing children of deaf parents is summarized in four factors, including the meaning of deafness or attitude towards self-acceptance and social interaction with deaf people and acceptance of their culture; responsibility towards deaf parents and different parents' feelings about raising a hearing child; the legal right to protect and manage the behavior of parents regarding feelings such as shame and guilt; and accepting the similarities and differences between themselves and their deaf parents. The four factors mentioned are consistent with the first, second, third, and sixth main categories of the present study. In addition, in the present study, the three main categories of social conditions, cognition and thinking, and life challenges were revealed, which was the main difference between the two studies. Myers et al. [14] stated that the lived experience of hearing adolescents with deaf parents is summarized in four factors, including family history and culture; childhood memories; emotions and choices; and their belonging to their parents and their differences towards their parents.
The main factors of the current study in the culture, emotions, and differences are consistent with the second and third main categories; however, they are different in other categories. In the recent research, a retrospective approach has been used, but in the present study, the present and the future have also been considered in addition to the past. Part of the different results of these two studies may be due to this reason. In addition, the findings of this study were consistent with the findings of Martins et al. [18] in terms of social conditions and life challenges regarding the effect of deafness on reducing access to social information and increasing the problems of deaf people and their families. It was consistent with the results of Humphries et al.'s [20] study regarding strong social support of family members and reducing the problems of these families in terms of emotion cycle categories and support networks.
According to the investigation and explanation of the results of this study, hearing impairment in a family member is effective on other members of that family and their quality of life [27]. Normal-Hearing children of parents with hearing impairment are a special group that little research has been conducted on their lived experience and has been highly neglected [9]. Also, most studies in this field have been conducted on the lived experiences of hearing parents with deaf children [12, 13]. In this regard, only the research studies of Buchino [1], Moore and Android [2], Fox [9], Singleton and Title [17], and Myers et al. [14] were similar to this study: fearing children of parents with hearing impairment. Considering that some main and subcategories of this research, such as the mentioned studies, emphasize on parent’s acceptance, cultural values, the cycle of emotions and supportive networks, and life challenges, and on the other hand, hearing of the sample and having deaf parents are considered that forms a special and even invisible group among the deaf community. Therefore, it is reasonable to expect the results to be highly consistent. In addition, there were differences in some categories, such as social status and cognition, and thinking, each of which was discussed. The slight differences in the research results seem to be related to the difference in the culture, gender, and age of the participants, as well as the level of education and other characteristics of their parents. Accordingly, it is natural that parents’ acceptance, cultural beliefs, emotions, social status, way of thinking, seeking support, and help to be the main themes of their lived experience. 
The study limitations include cultural differences and related experiences of culture, gender, and age of the participants. In addition, the results of qualitative research have less generalizability than quantitative research, which is a limitation. It is suggested that more attention be paid to the culture, age, and gender of the participants and the psychological characteristics of the participants in future studies. In general, the results of the interviews of the current study were classified into seven main categories after thematic extraction and classification. Overall, an analysis of the lived experience of normal hearing adolescents of parents with hearing-impaired explained that they are affected by their parents’ hearing status in different ways. Therefore, these categories can be used to develop educational and psychological programs for normal-hearing adolescent children with deaf parents.

Ethical Considerations
Compliance with ethical guidelines

Although ethical considerations have been taken into account in the current research, the code of ethics was not assigned to it. In order to comply with the ethical principles, the participants were informed about the implementation process. They signed a written consent to participate in the research. The extracted information and the names of the participants were confidential, and they were allowed to withdraw from the research whenever they wanted.

Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Conflict of interest
The authors declared no conflict of interest.

Acknowledgments
The education of Isfahan province and the teenagers participating in this research are thanked and appreciated.


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Type of Study: Original | Subject: Rehabilitation Management
Received: 27/05/2021 | Accepted: 6/09/2021 | Published: 1/04/2022

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