Stages of Emotional Experience of Parents of Children with Cochlear Implantation (CI) ()
1. The Features of Hearing Impairment
There are about 12 million people with hearing impairment in modern Russia. Hearing impairment is the loss of the human body’s ability to detect all sound frequencies or distinguish sounds with low amplitude. There are congenital or acquired, complete (deafness/total deafness), or partial (sensorineural/sensorineural hearing loss of various degrees of severity) hearing impairments. Hearing loss disrupts communication with others, leading to the child’s defective speech and intellectual development [1] .
The difficulty in establishing contact leads to the isolation and aggressiveness of the child. In the future, this leads to dissatisfaction with the quality of life and subsequent detachment from the social environment, unwillingness to interact with society [2] .
Children with hearing impairment must have hearing aids as early as possible. Hearing aids promote full intellectual development and social rehabilitation [3] .
Cochlear implantation is a type of hearing aid [4] .
Cochlear implantation makes it possible to change the development of a child diagnosed with deafness with remaining hearing and total hearing loss and makes it possible to embark on the path of development of a hearing child. Cochlear implantation is a surgery when a system of electrodes is inserted into the patient’s inner ear, providing the perception of sound information through electrical stimulation of the preserved fibers of the auditory nerve [5] .
However, an effective outcome of surgical intervention after cochlear implantation is impossible without audio-verbal rehabilitation [6] . A child who has heard sounds for the first time will need years of intensive work with sign language teachers, audiologists, speech therapists, speech pathologists, and, of course, parents. To date, it is impossible to achieve optimal results in the development of natural audio-verbal behavior without audio-verbal rehabilitation.
The current situation creates many difficulties in the family of a child with impaired hearing, the experiences of parents are mostly negative, parents worry about the future of the child, undergo social isolation, etc. [7] .
We would like to note that the modern approach to a family raising a child with health problems is to consider the family as a rehabilitation structure. E. Erickson believes that for the formation of a harmonious personality and the development of adequate self-esteem in a child, which is necessary when establishing proper relationships with other people, a loving and understanding adult should be present near a child [8] . Adequate assistance to the child can be provided primarily not only by those parents who are in a stable condition and are aware of what is happening to the child but also by those who understand what is happening to their own emotional and mental state.
Thus, parents of children with a cochlear implant need special help to get into a stable psychophysiological state quickly. Destabilizing parents’ emotional states hurt the formation and satisfaction of the needs of a child with disabilities, which in turn prevents the realization of habilitation potential. A kind of vicious circle appears: the limited capabilities of the child contribute to the generation of experiences and emotional disorders in parents, which, in turn, aggravates the problems of the child themself, slows down their development, and provokes the appearance of secondary, socially conditioned deviations. The unstable emotional state of parents can also manifest itself in placing blame on the child, assigning negative traits to them, etc. That is why the study of the emotional experiences of parents raising children with a cochlear implant is currently an urgent problem in developing rehabilitation programs.
2. Stages of Emotional Experience of Parents of Children with Cochlear Implantation (CI)
A deaf child in a family brings a lot of negative emotions to parents, and respectively, their experiences have a negative tone to them. Parents may experience anger, helplessness, resentment, emptiness, and a sense of detachment. Long-term negative experiences lead to deformation of intrafamilial and child-parent relations, as a result of which children do not receive adequate help from their parents, and the rehabilitation process is delayed: overly worried, parents can get into the role of a mentor concerning their children, they seek to determine the topics of conversation, not following the interests of the child, begin to actively and excessively do things with children (while parents neglect to engage with children playfully). Experiencing negative feelings that the psychologist has not dealt with, and parents having attitudes that prevent them from building positive relationships with children, which negatively affects the development of children’s communication skills. As a result, the child experiences stress and misunderstanding of what is happening. In such cases, rehabilitation is delayed.
Parents play an important role in forming the personality of children with a cochlear implant and their successful integration into society. After all, the child can get as close as possible to normally hear peers only through a minute-by-minute and purposeful process of communication with the child and daily classes on audio-verbal rehabilitation [9] . In addition, family is generally the first social environment that a child encounters. As a social institution of upbringing, the family occupies one of the most critical places in the process of personality formation. In the first years of a child’s life, parents are the core of their social situation of development: at an early age, the social situation of a child’s development consists of cognition of the surrounding world through actions with objects. The child’s parents are accomplices in the substantive activity, and the child subtly feels the praise and blame of parents and their mood.
The family can act both as a positive factor in the upbringing and development of a child and as a negative one. Considering the influence of the negative factor, it can be noted that in families where children have anomalies, a specific situation often arises, bearing the nature of a personal tragedy for the parents. If the birth of a healthy child brings much joy into the life of parents, then the birth of a baby with a defect, as a rule, is a huge emotional burden due to prolonged stress, as a result of which the family faces several problems.
Based on the above, we conducted a study of parents of children with a cochlear implant to overcome the mental tension of parents and form their readiness for the rehabilitation and correctional process. Knowledge of the process of parents’ experiences of children with hearing aids, and understanding the phases and peculiarities of the course of experiences in the problems of the post-surgery period allows us to find the optimal approach to psychocorrective work with parents.
The study involved 62 subjects aged 30 to 50 years. The respondents were divided as follows:
· Group 1—21 people preparing for the surgery of cochlear implantation of a child (or are in the process of post-surgery recovery before connecting a speech processor);
· Group 2—24 parents have children with implanted hearing aids actively undergoing rehabilitation;
· Group 3—children of 17 parents are in the process of completing rehabilitation measures.
The formation of gripping experiences was studied in Group 1, the formation of lowering experiences was considered in Group 2, and the features of uplifting experiences were identified in Group 3.
The subjects were asked to take Eysenck Personality Profiler, then give the original interview. The Eysenck Personality Profiler includes such qualities as anxiety, frustration, rigidity, and aggressiveness.
According to the anxiety scale, all three groups were found to have increased anxiety. This is because parents are apprehensive about the future of their children; they expect an unfavorable development of events, as a result of which they suffer from foreboding and are in constant tension because this scale characterizes an individual mental personality trait, which manifests itself in a person’s tendency to frequent and intense experiences.
The frustration scale in the first and second groups was traced at the minimum and average values. The state of frustration manifests itself in such negative experiences as, for example, despair, misunderstanding of what to do next, irritability, etc. In Group 3, the scale of frustration is not expressed.
According to the aggressiveness scale, the following results were established: in Group 1, aggressiveness is more pronounced than in Group 2. The aggressiveness of parents of children with hearing impairment manifests itself due to negative experiences and is expressed in a tendency to attack and cause discomfort. Parents tend to demonstrate superiority over other people as a result of self-isolation. In Group 3, the aggressiveness scale reaches minimum values.
According to the rigidity scale, Group 1 respondents showed high values. Parents who have just learned about the diagnosis of a child experience difficulties in changing the activity program planned by the subject, which leads to a state of depression because a particular and habitual way of life collapses. Group 2 of parents showed a tendency to rigidity. If the plans and goals of the rehabilitation route are shifted to the side, then parents are usually not ready for this—their experiences and emotions will be negative, and parents will be under severe stress. Group 3 of parents, on the contrary, have lower values on the rigidity scale.
Further, comparing the results of the questionnaire and the results of the original interview, we identified three phases of experiences:
1) Gripping experiences are experiences like feelings of maladaptation, uncertainty, fear, and anger. According to the results of the original interview, it was found that at the time of the diagnosis of the child, parents face such negative emotions and experiences as fear, shock, anger, a sense of loss, and rejection of the situation. During the study, parents said that the feeling of fear arose because they had no relatives with hearing impairments; they were not prepared for the fact that they would have a deaf child. They were scared of the realization that what they say to their child, they do not hear. It was difficult to imagine how their child, being hearing impaired, would be able to develop and communicate and, in general, fully exist in the world. Respondents said they were shocked that this happened to them in their family. They felt lost due to strong feelings about how they would tell their relatives and friends about the child’s diagnosis and how they would be able to tell them that they were going to have cochlear implantation because they did not understand what steps they would take.
2) Lowering experiences are negative experiences of longing, emptiness, and isolation. Parents may move away from acquaintances, friends, and even relatives and face a high social behavior control threshold. In the original interview, during the study, it was noticed that parents of children with a cochlear implant noted such sensations as apathy, unwillingness to contact anyone, desire to hide, there was acute reluctance to get out of bed in the morning, the inability to get the former pleasure from spending time with friends, it is difficult to switch from thoughts about what is happening to other things, there were tingling sensations in the thoracic region, heavy headedness. Parents also expressed such thoughts: “It feels like you are underwater… You kind of exist, but you do not.” Based on the results of the Eysenck Personality Profiler, as well as during the original interview, we noted that parents of hard-of-hearing and deaf children who are about to undergo cochlear implantation tend to wrap themselves in negative experiences and “fall into anxiety episodes” as if these experiences entirely absorbed them.
3) Uplifting experiences are experiences of happiness from seeing the result of the rehabilitation process. According to the results of the original interview in the course of the study, it was noted that when parents see their first successes, they become very enthusiastic; they share their successes with their friends and relatives, actively discussing them. They begin to let a new reality into their lives more willingly; they show courage and willingness to learn new things because they are now not afraid to make plans considering what happened. Despite the difficult experiences, the parents talked about a high sense of happiness and a desire not to give up until the end of rehabilitation, after they heard their child’s first words. Respondents said they felt a sense of pride for their child, an immense, overwhelming joy that can lead to tears. The study participants noted that thanks to the path they have traveled, they have become stronger as individuals, and they have become much more loyal to people with health problems than before. Thus, such experiences are positive and resource-based for parents of children with a cochlear implant.
Also, in the process of conducting the original interview, we found that no parent was given or offered the opportunity to seek the help of a psychologist.
3. Discussion of the Results
The discussion and analysis of parents’ emotional state, children’s disabled behavior, mental health, and other aspects combined with the results of this study highlight the significant impact that raising a child with a cochlear implant has on parents and the importance of addressing their emotional well-being in the rehabilitation process.
The study revealed that parents of children with a cochlear implant experience a range of negative emotions, including anger, helplessness, resentment, emptiness, and a sense of detachment. These emotions are often a result of the challenges and uncertainties associated with their child’s hearing impairment and the rehabilitation process. Parents face difficulties in accepting the diagnosis and adjusting to the new reality of having a child with a hearing impairment.
The negative emotional experiences of parents can have detrimental effects on the child’s development and the parent-child relationship. Parents who are overwhelmed by negative emotions may struggle to provide adequate support and engage in appropriate communication with their children. This can hinder the child’s progress in speech and language development and delay their overall rehabilitation.
Moreover, the study found that parents of children with hearing impairments often experience social isolation and anxiety about their child’s future. The fear of an unfavorable development and the uncertainty surrounding their child’s ability to fully exist in the world contribute to heightened anxiety levels among parents. This anxiety can further impact the parent-child relationship and delay the rehabilitation process.
The findings also revealed three distinct phases of parental experiences: gripping, lowering, and uplifting experiences. Gripping experiences are characterized by feelings of maladaptation, uncertainty, fear, and anger. Lowering experiences involve negative emotions such as longing, emptiness, and isolation. Uplifting experiences emerge when parents witness the positive outcomes of the rehabilitation process, leading to feelings of happiness, pride, and resilience.
Understanding these phases of parental experiences is crucial in developing effective psycho-corrective and psychotherapeutic interventions. By addressing the emotional needs of parents and providing them with appropriate support and resources, professionals can enhance the rehabilitation and habilitation process for children with cochlear implants. When parents are in a stable mental and psychological state, they can actively participate in their child’s rehabilitation, effectively implement recommendations from practitioners, and contribute to their child’s integration into society.
The study emphasizes the importance of considering the family as a rehabilitation structure and providing comprehensive support to parents of children with disabilities. It highlights the need for early intervention programs that address the emotional well-being of parents, offer psychological support, and facilitate their understanding and acceptance of their child’s condition. By fostering a healthy family climate and empowering parents, children with cochlear implants can benefit from improved self-esteem, communication skills, and socialization, leading to better overall outcomes in their development and integration into society.
4. Conclusion
Thus, according to the results of the original interview and the Eysenck Personality Profiler, during the study, we identified three types of experiences: gripping, lowering, and uplifting experiences. Knowing the phases of experience of parents of children with a cochlear implant, we better understand their psychological state. Based on the data obtained during the study, we can increase the effectiveness of psycho-corrective and psychotherapeutic work with parents of children with implanted hearing aids. Based on this, we have the opportunity to directly impact the process of rehabilitation and habilitation of persons with hearing impairment. Parents who are in a stable mental and psychological state, who can realize and identify their emotional experiences with the external environment, are able not only to effectively and consciously cooperate with practitioners, perceive, synthesize and generalize the recommendations received from them in full but also integrate the acquired skills into the child’s life, thereby providing high-quality help. The active participation of parents of children with disabilities in the nurturing and educational processes of the child’s life allows the child to undergo rehabilitation programs faster and more effectively. A healthy family climate helps children with health problems adapt and integrate into society faster, thereby contributing to the development of adequate self-esteem and communication skills, including socialization. A child with disabilities who feels understood and accepted by significant adults suffers less from self-doubt, isolation, and increased anxiety is inclined to show courage in establishing social contacts, and therefore is interested in implementing and reproducing positive scenarios on their life path in the future.