Abstract
Objectives
To study the level of social well-being for children with hearing loss (HL) using self-completed questionnaires.
Methods
The data sample relates to a total of 22 children representing a new group of children with HL. This new group is defined as HL detected through neonatal hearing screening and fitted with hearing technology when relevant before 6 months, received bilateral cochlear implants before one year of age followed by specific educational training using the auditory-verbal practice. The age range was from 9 to 12 years. Two self-completed questionnaires were used: The California Bullying Victimisation Scale (CBVS) and the Strengths and Difficulties Questionnaire (SDQ). The project design was a prospective case series.
Results
Self-completed assessments revealed levels of social well-being for both questionnaires comparable to populations with normal hearing. CBVS results showed that a total of 52.6% reported being ‘not a victim’, 36.8% peer victims and 10.5% bully victims. Results from SDQ revealed that 94.7% of the children reported being within the normal level for scores on both social strength and difficulties, 5.3% scored slightly raised/lowered and 0% had high/low scores or very high/low scores.
Conclusion
The new group of children with HL presented with self-completed scores comparable to peers with normal hearing. It is time to raise expectations for children with HL in terms of not only outcomes on audition and spoken language but also most importantly on levels of social well-being. Furthermore, it is discussed whether this new group can also be defined as a new generation of children with HL.
Introduction
Hearing loss (HL) may have an impact on the aspects of socio-emotional development, e.g. behaviour, energy, stress, self-esteem, and anxiety, consequently leading to problems with maintaining a satisfying social life. This is alarming because social interactions and friendships are associated with psycho-social well-being as well as having close, positive peer relationships which are associated with increased self-esteem, regulation of emotion, better adjustment to school and a positive attitude to school (Laugen et al., Citation2016; Overgaard et al., Citation2021). Hence, HL can have a substantial negative and lifelong impact on Quality of Life (QoL) including social well-being (Haukedal et al., Citation2020; Meserole et al., Citation2014). However, paediatric hearing health has undergone tremendous development due to the introduction of universal neonatal hearing screening (UNHS), digital hearing aids (HA) and cochlear implants (CI). This development is summarised in the World Report on Hearing from 2021, where WHO states:
Children with cochlear implants have a greater likelihood of acquiring oral language, integrating into regular schools and being able to experience sounds along with better speech skills. Cochlear implants can also have a beneficial impact on learning and educational outcomes as well as the overall quality of life, though many factors other than implantation influence these results. (World Health Organization, Citation2021)
Self-reported questionnaires
The study is part of a large intervention study carried out by multiple partners; Multisensory Experience Lab, Aalborg University, Denmark (Melcph.create.aau.dk 2023) and a Danish patient organisation for children and adolescents with HL, Decibel (decibel.dk 2023) co-created a Virtual Reality (VR) application (app) to train spatial awareness in challenging listening situations. Copenhagen Hearing and Balance Centre evaluated the effect of the VR training and among several factors investigated the self-reported social well-being of the children who were part of the intervention. It is the data from these social well-being assessments that the present study investigated. All children have been diagnosed through UNHS with early surgical-technical and educational intervention. The children have been monitored for language development and social well-being since one year of age as they have been part of various intervention studies (Percy-Smith et al., Citation2018; Wischmann et al., Citation2022). The group of children with HL has now reached an age where they reliably can complete questionnaires assessing their perceptions of different social well-being parameters such as being bullied and strengths and difficulties related to social life. Furthermore, this new group has language levels within the normal range and hence can reliably answer online and written questionnaires without assistance from parents or teachers (Percy-Smith et al., Citation2018; Wischmann et al., Citation2022).
Two validated questionnaires were used: the ‘Strengths and Difficulties Questionnaire’ (SDQ) (Goodman, Citation1997), and a self-reported behaviour-based questionnaire identifying bullying, the ‘California Bullying Victimisation Scale’ (CBVS) (Felix et al., Citation2011).
Aim
The overall aim of the study was to investigate how children representing a new group of children with HL assess themselves in terms of being bullied and social strengths and difficulties. Specific research questions included:
What differences and similarities exist between parental assessments and children’s assessments of social well-being?
What differences and similarities exist between different groups of children with HL?
Does it make sense to compare the ratings from children with HL to ratings from children with NH?
Material and methods
The overall project has a comparative design with a methodological character and, thereby, excludes issues of an experimental nature, i.e. no testing of children in laboratory settings with different adjustments of their hearing technology. In line with Danish law for notification of scientific research projects, the project was notified and cleared by the scientific ethical committee in the Capital Region of Copenhagen. This is where the person responsible for the project lives. Informed consent was attained from the child's family or legal caregiver. Information about diagnoses, technology, and age at implantation is retrieved from the medical journal of each child. The project is a prospective case series and was conducted from September 2021 to March 2023.
Participants
Inclusion criteria were children characterised as belonging to the new group which was defined as early medical-surgical, technical, and educational intervention. Exclusion criteria were children diagnosed with additional disabilities. resumes the characteristics of participants. A total of 22 children with HL were included (15 boys and 7 girls) with an age range of 9–12 years at project start and parents who all had NH. Except for one child born in Greenland, where UNHS is not implemented, all children were diagnosed through UNHS with no additional disability. One child has later been diagnosed with learning disabilities. Most of the children (32%, N = 7) had unknown diagnoses (Degeneratio labyrinthi acustici non Specificata). Six children (27%) were diagnosed with Connexin 26. The mean age for intervention with HA was 11.59 months and the median age was 7.5 months. The mean age for intervention with CI was 16.27 months and the median age was 11.0 months. Three children were first fitted with HA at 21, 26 and 31 months of age due to progressive hearing loss and technology was not appropriate until then. Two children were bilingual with one parent speaking Danish and one parent speaking French, and the other family had one parent speaking Danish and one parent speaking English. All other children were monolingual with Danish.
Table 1 Characteristics of participants
Before using the ‘California Bullying Victimisation Scale’ (CBVS) a pilot study was carried out involving 30 children with HL and 69 children with NH (Gade and Hammer, Citation2020).
Before the current project, the 22 children had all been enrolled in early educational intervention from the day of detection of HL with a specific focus on developing listening and spoken language by the use of auditory verbal (AV) practice. The AV intervention is an educational intervention specifically targeted children with HL and makes use of specific techniques and strategies to develop and grow the child’s auditory cortex towards the preferred listening and spoken language outcomes. AV practice is defined as a family-centred approach and an applied science with objectively measured goals (AVUK.org, 2023). At the pre-school level children and families received AV intervention every other week or monthly depending on the child´s and the family’s individual progress. At the school level children, families and teachers received AV guidance which included: annual testing in terms of the level of audition/listening, speech, language, pragmatics and social well-being; annual information meetings for parents and teachers about school issues such as how to use assistive listening devices and how to implement auditory-verbal strategies and techniques in the classroom; bi-annual visits to each child’s school with systematic observations in classrooms followed by the supervision of the teachers.
Since nursery school, all children had been monitored for language and social developments in terms of vocabulary, core language, pragmatics, working memory and social well-being, and all 22 children performed within the norm on language issues and all children, except one child, were assessed by parents to have high levels of social well-being (Percy-Smith et al., Citation2018, Citation2021).
Applied assessments
Two different self-completing questionnaires were used to assess the children’s level of social well-being. The SDQ (Goodman, Citation1997) and the CBVS (Felix et al., Citation2011). All children filled out the two questionnaires. The SDQ were filled out by pen and paper and the CBVS was filled out online at home. The SDQ was filled by pen and paper as the electronic version did not adhere to the hospital’s data management rules. It was underlined to parents not to assist the children in answering the CBVS. Parents (one questionnaire per child) completed the parent version of the SDQ.
The SDQ is a brief behavioural screening questionnaire for children and adolescents from 2–17-year-olds. It exists in several versions targeted at parents, researchers, clinicians, teachers, and children/adolescents. Each version includes between one and three of the following components: emotional symptoms, conduct problems, hyperactivity/inattention, peer relationship problems, and prosocial behaviour. The same 25 items are included in questionnaires for completion by the parents or teachers of 2–17-year-olds (Goodman, Citation1997). Questionnaires for self-completion by adolescents ask about the same 25 traits though the wording is slightly different. The self-report version is suitable for young people aged around 11–17, depending on their level of understanding and literacy. The score is divided into four categories: normal, slightly raised/lowered high/low scores or very high/low scores. SDQ is validated in Danish and hence has Danish norm data.
CBVS is a self-reported behaviour-based questionnaire in which the term ‘bullying’ is not mentioned. Participants answer how often they have experienced seven different behaviours in a mean or hurtful way in the past month including the following items: being teased or called names by another student; rumours spread or gossip behind their back; left out of a group or ignored; hit, pushed, or physically hurt; been threatened; had their things stolen or damaged; and been teased, had rumours spread, or threatened through the Internet or text messaging. Respondents are asked to rate the frequency of each of these experiences on a five-point scale (0 = Never, 1 = once in the past month, 2 = 2 or 3 times in the past month, 3 = about once a week, and 4 = several times a week) (Felix et al., Citation2011). Subsequently, respondents are asked to compare themselves with the main person, who did this behaviour to find out whether they experienced any power imbalance. The questionnaire was translated and culturally modified and tested on 69 children with NH and 30 children with HL before being applied to the current group (Gade and Hammer, Citation2020). The score is divided into three categories: not a victim, peer victim and bully victim. Not a victim refers to respondents, who do not experience any type of victimisation. Peer victim refers to respondents who report at least one occasion of victimisation within the past month, but the respondents do not experience any power imbalance, or the behaviour has not occurred often enough to classify it as a bully victim. Bully victims refer to respondents who report a minimum of one occasion of victimisation, which has occurred a minimum of 2–3 times in the past month and the respondent experiences a power imbalance (Felix et al., Citation2011).
Data analysis
Descriptive statistics were summarised as frequencies and percentages. To test for correlation between scores from SDQ and CBVS Pearson’s chi-square test was applied. For comparison between the pilot study and the new group scores from the CBVS were analysed using the chi-square test. For correlations between children’s scores and parents’ scores on SDQ Pearson’s chi-square was applied. P-values below 0.05 were considered statistically significant.
Results
Two children declined from the project. One child felt uncomfortable being with peers with HL and would rather be associated with peers from the local football club. One child never managed to use the app.
CBVS
summarises the CBVS scores between children with NH (Pilot group NH) and children with HL (Pilot group HL) with the new group of children with HL (New group) from this study. The analysis did not show any significant differences between the groups (Pilot group NH vs New group, P-value = .511261) (Pilot group HL vs New group, P-value = .470759).
Table 2 Distribution of scores and P-values Pilot group HL and NH vs New group
SDQ
summarises the scores of the SDQ for the new group. For social strengths, the children reported a normal score of 94.1% (N = 16). Only one child (5.9%) had a score slightly lower. No children had low or very low scores. For scores of social difficulties, most children had normal scores, 94.1% (N = 16). Only one child (5.9%) had its score slightly raised. No children had high or very high scores of social difficulties.
Table 3: Distribution of scores and P-values from SDQ
also summarises the distribution of scores between children and parents’ assessments of their child on the SDQ. Data relate 17 children and 19 parents (two children were excluded from self-completions as they were not old enough, two children declined, and one child did not manage to fill out the SDQ hence the parent reporting was also excluded). A vast majority of both children and parents had scores at normal levels for both social strengths and difficulties; children 94.1% (N = 16) and 94.1% (N = 16) and parents 94.7% (N = 18) and 94.7%, respectively (N = 18). One child (5.9%) and one parent (5.3%) had a slightly lowered score on social strengths. For social difficulties, one child (5.9%) and one parent (5.3%) had a slightly raised score. No children and no parents reported low/very low scores or high/very high on either social strengths or social difficulties. Chi-square tests of independence showed that there were no significant associations between scores from the children and the parents (P-values .935466).
Discussion
The new group of children with HL showed high levels of social well-being on two different self-reported questionnaires. To the best of our knowledge, this is the first documentation of this new group, where the children have assessed themselves with such positive results. It can be argued that the group of children was not representative of children with HL in general, because they reflected a particular group who had had extraordinarily intense educational intervention as they belonged to several intervention studies over a 12-year period. On the other hand, it can be argued that this group will set new standards and will show the way for coming generations of children with HL therefore the group may be seen as a new generation of children with HL. This generation is defined as HL detected through UNHS and fitted with hearing technology when relevant before 6 months, received bilateral CI before one year of age followed by specific educational training using the AV practice. Results of the current study underline that when children and parents are offered specific auditory and relevant educational intervention together with early diagnosis and early medical-technical intervention the children will develop language and social well-being very differently from what has been documented for children and adolescents with HL in previous studies (Dammeyer et al., Citation2018).
It is time to question whether studies of the social well-being of congenital deaf children implanted as old as five years of age provide any new and relevant knowledge for children with HL and their parents of today. It may be argued that it is time to differentiate results on children with HL according to the onset of medical-technical and educational intervention, which will provide a more nuanced picture of the children and provide a much-needed renewal understanding of today’s different groups of children with HL. This again will assist professionals in educational audiology and policy-makers to target interventions according to the groups’ different needs. It is crucial to have high expectations for any child’s development and provide the latest evidence-based knowledge to parents and all professionals involved in paediatric audiology. Furthermore, it is interesting to reflect on the fact that the current group of children had very short periods of auditory deprivation and they all communicated with their parents in a language, which was the language of the heart of their parents, e.g. spoken Danish, French, or English. It is noteworthy that no parents used sign language which would have been a foreign language for the parents who all had normal hearing. Communication in a foreign language with a child is complex and it has long been accepted that deaf children of deaf parents, who share the language of the heart of the parents, e.g. sign language, have higher levels of social well-being compared to deaf children and parents with NH (Sundqvist et al., Citation2014). It may be assumed that the same is true for deaf children with access to hearing through technology, that sharing the language of the parents’ heart will have a positive effect on the level of social well-being. This assumption was confirmed by the results of our study. Already in 2012, Knoors and Marschack suggested revising the language approach to children with HL due to the medical-technical developments (Knoors and Marschark, Citation2012). The current group of children is representative of such a revised language approach. Furthermore, our results are in line with several other studies (Laugen et al., Citation2016; Warner-Czyz et al., Citation2018) which also found that early detection and early intervention were associated with levels of social well-being comparable to children with NH and that younger generations of children with HL were less bullied than older generations. Therefore, we argue that it does make sense to compare children with HL to norms from children with NH.
It is interesting that in contrast to former studies of parents and children reporting on social well-being parameters, this study found high agreement between parents and children’s assessments. A study from 2012 reported that parents rate their children with HL as more socially successful than the children do themselves (Marschark et al., Citation2012), but our study did not replicate such data. This may be explained by the fact that the two studies investigated two very different groups of children with HL. It is a positive finding of our study that parents and children are aligned in their understanding of how they cope in social life.
The two questionnaires are both defined as being behavioural. However, the approaches are highly different as SDQ makes use of words such as bully, stomach aches, headaches, and unhappy. It may be argued that when using such vocabulary, the questionnaire has a more definition-based approach. The children and adolescents are provided words already defining their feelings. Children of the present study commented on the questions of SDQ and felt that it was ‘old-fashioned questions’. It may be an idea that SDQ is revised in terms of use of more updated vocabulary. Furthermore, as an investigator, there is an aspect of ‘putting words into the mouth’ of the children, which presents a bias. This bias is, furthermore, underlined when considering that teenage is defined vulnerable where identity is built, and comparisons to peers are vital (Ogden and Hagen, Citation2018). Therefore, it must be with caution that words such as stomach aches and being bullied are used not to impose problems on vulnerable teenagers. In contrast to SDQ, the CBVS does not use the term bullying but instead, respondents answer how often they have experienced seven bullying behaviours in the past month. CBVS seemed more sensitive to tracking minor issues of being bullied and makes use of the score ‘peer victim’. This refers to respondents who report at least one occasion of victimisation within the past month, but the respondents do not experience any power imbalance, or the behaviours have not occurred often enough in the past month. For the New group, this score was 36.8% (N = 7). This result is comparable to scores from Danish children with NH, where a score for peer victims of 33.3% (N = 23) was reported (Gade and Hammer, Citation2020). However, the strength of SDQ in contrast to CBVS is that it is a worldwide tool and translated into 70 different languages with validation from four years of age. Furthermore, it is a relevant tool to use to study the correlation between different groups, which was one of the aims of our study.
Limitation of study
A limitation of our study was the small sample size, which did not allow for any statistical analysis other than descriptive analysis. Moreover, no statistically significant differences were found when Pearson’s chi-square test was applied. Therefore, future studies involving more children and adolescents belonging to the new group of children with HL seem highly warranted. Furthermore, it is crucial to also monitor the social well-being of children and adolescents with HL and additional disabilities. Previous studies have documented that this group is rated significantly lower than the current group despite early medical-technical intervention followed by AV practice (Percy-Smith et al., Citation2021). However, groups of children with HL and additional disability may not have the level of understanding and literacy to answer the questionnaires, which is also underlined in the SDQ.
Conclusion
The results underlined that a new group of children with HL is emerging and that children with HL had self-completed scores in the normal range. There were no significant discrepancies between children’s and parents’ assessments, which was a positive result compared to former studies, where parents rated their children with HL more successful than the children themselves. It is time to differentiate between groups of children depending on the onset of medical-surgical and educational intervention. For the new generation of children with HL, it is also time to raise expectations in terms of not only outcomes on audition and spoken language but also most importantly on levels of social well-being.
Disclaimer statements
Funding This work was supported by Velux Fonden.
Conflicts of interest None.
Ethics approval None.
Correction Statement
This article has been corrected with minor changes. These changes do not impact the academic content of the article.
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