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Childhood hearing loss: Impact on parents and family life
International Journal of Pediatric Otorhinolaryngology 120 (2019) 140–145
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International Journal of Pediatric Otorhinolaryngology journal homepage: www.elsevier.com/locate/ijporl
Childhood hearing loss: Impact on parents and family life a,∗
a
b
Jesper Dammeyer , Anja Toft Hansen , Kathryn Crowe , Marc Marschark a b
T b
University of Copenhagen, Department of Psychology, Denmark National Technical Institute for the Deaf, Rochester Institute of Technology, USA
A R T I C LE I N FO
A B S T R A C T
Keywords: Hearing loss Children Parents Families Well-being
Background: Studies investigating the impact of having a child with hearing loss on the lives of parents and families have shown divergent results. Where some studies have reported that childhood hearing loss is associated with parental mental health problems, such as depression and stress, other studies report no impact on parental mental health and/or wellbeing. Objective: The aim of this study was to examine the association between child-related variables—degree of hearing loss, additional disabilities, sign language abilities, cochlear implants (CI), externalizing and internalizing emotional and behavioral difficulties measured by the Strength and Difficulties Questionnaire (SDQ)—and parent-related variables—parents living together, parents' mental health, spouse activities without children, and parents’ experience of the child as being a burden for the family. Method: Data of 257 parents of children with hearing loss from a national survey were included. Results: Only 18% of the children with hearing loss did not live with both parents, a figure significantly lower than that of the general population. The child variables of degree of hearing loss, having a CI or not, and sign language ability were not significantly associated with any of the parent variables investigated. The child having a disability in addition to hearing loss was found to be significantly associated with the frequency of spouses engaging in activities without children and reports that the child was a burden for the family. Both higher externalizing and internalizing scores on the SDQ were significantly associated with parental mental health problems, frequency of spouse activities without children, and the degree to which the child's difficulties were experienced as a burden for the family. Conclusion: Children's hearing loss, per se, was found not to be significantly related to several key parent and family variables. However, children having additional disabilities and behavioral and emotional difficulties were significant with parent and family variables. This study thus underlines the need for further studies concerning relationships among factors related to childhood hearing loss and various family factors in order to better understand their impact on child development and family life.
1. Introduction How childhood disability impacts family life is an area in which greater understanding is emerging, but much research is needed to fully conceptualize how disability influences parents and families [1]. This is the case for a broad range of disability types, including children with hearing loss and their families, the focus of this paper. From the research available to date, findings are inconclusive regarding if, how, and to what degree a child's disabilities affect parental and family life. One theme that has been investigated for parents of children with a range of disabilities is couples' satisfaction with their relationship and their risk of divorce. Dyson [2] conducted focus group interviews with 11 parents of children with learning disabilities, finding
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that these parents were dealing effectively with challenges such as stress and parenting disagreements. Hatton and colleagues' [3] cohort study of children with early cognitive delays, however, reported that the children were less likely to live with both of their biological parents compared to children without cognitive delay. Similarly, in a study involving children with ADHD, Heckel, Clarke, and Barry [4] found that there was a relationship between risk of parental divorce and the presence of a disruptive behavior pattern in their child. Studies reporting on the marital status of parents of children with hearing loss are few, but one study from the United States found that parents of 91% of the 46 children with hearing loss (mean age 12 years) were married or living together [5] compared to about 70% of children in the United States living with both parents in 2007 [6]. A German study of 57 deaf
Corresponding author. University of Copenhagen, Department of Psychology, Øster Farimagsgade 2a, 1353, Copenhagen K, 22808389, Denmark. E-mail address: [email protected] (J. Dammeyer).
https://doi.org/10.1016/j.ijporl.2019.02.027 Received 27 October 2018; Received in revised form 10 January 2019; Accepted 12 February 2019 Available online 15 February 2019 0165-5876/ © 2019 Published by Elsevier B.V.
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hearing loss, Quittner et al. [28] found that parent-reported and/or directly observed child behavior difficulties were significantly related to reports of increased parenting stress. Children with hearing loss themselves have been reported to be at greater risk of experiencing both internalizing (emotional) and externalizing (behavioral) difficulties [33,34]. These difficulties have been found to have a broad range of effects on parents and on family life. The number and type of additional disabilities experienced by a child with hearing loss may also impact their development [35], on their risk of psychosocial difficulties [33], and mental health problems [36]. The extent to which additional disabilities and internalizing and externalizing behaviors of children with hearing loss are associated with parental stress has only been investigated in a few studies. Kushalnagar et al. [5] examined associations between parental depression and the intelligence and behavior adaptability of children with hearing loss being considered for cochlear implantation. A moderate correlation was found between parental depression and children's adaptive behaviors (communication and daily living skills) among children younger than three years of age, but not for children older than three years of age. Van Driessche et al. [37] also investigated children having additional disabilities in a sample of children with hearing loss aged 3–16 years in south India. Additional disability was found not associated with caregiver strain or parental psychological symptoms. In summary, to date there are conflicting findings concerning how childhood hearing loss might affect the parents and family life. This study sought to add to current knowledge by examining the association between a number of child-related and parent-related variables in a large and heterogeneous cohort. The research questions were: (a) Are parents of children with hearing loss more or less likely to live together compared to the general population? (b) Are the child-related variables of degrees of hearing loss, CI, additional disability, levels of sign language skill, level of discrepancy between children's and parents' sign language skills, and levels of externalizing and internalizing behaviors associated with the parent-related variables of parents living together or not, parents' mental health problems, number of spouse activities without children, and the child being experienced as a challenge for the family?
children aged 2–16 years found that 81% of the parents were together [7]. In a different approach, Flaherty [8] focused on the experiences of hearing parents of deaf children before and after diagnosis of their children's hearing loss. She found that mothers and fathers used different coping strategies in response to the diagnosis, and that sometimes these differences could lead to marital tensions. The mental health of parents of children with disabilities, including levels of stress, has been another focus in previous research. Similar to the mixed findings regarding marital status, these studies have yielded contradictory results with respect to whether parenting a child with disabilities is more stressful than parenting a child without disabilities. Increased parental stress has been reported for the parents of children with a wide range of disabilities, including autism spectrum disorder [e.g. [9,10]], developmental disabilities [e.g. [11]], and ADHD [e.g. [12]]. Biswas, Moghaddam, and Tickle [13] completed a critical review of studies identifying factors influencing stress among parents with children with intellectual disabilities. They concluded that those parents could not be seen as a uniform group, and that different factors were important in explaining their levels of stress. These factors included a child's behavioral difficulties, ineffective parental coping strategies, and poor family environments. Studies concerning children with hearing loss similarly yield ambiguous findings concerning parental stress [14]. Some studies have reported a higher stress level among parents with children with hearing loss [15–17]. For example, Sarant and Garrard [18] examined level of stress among 70 parents of 5- to 8-year old children with cochlear implants (CIs) and found a higher level of stress among these parents compared to a normative population. Other studies have not found a higher level of stress among parents with children with hearing loss [19–21]. Pipp-Siegal et al. [21], for example, reported that the 184 mothers of children with hearing loss who participated in their study were slightly but significantly less stressed than mothers of children without hearing loss. Other studies have described a complex relationship among child, parent, and environmental factors [e.g. [22]]. These studies, while not conclusive as to the level of parental stress experienced when parenting a child with a hearing loss, point to a number of child- and parent-related factors that may be important mediators. One factor found to be associated with level of stress and mental health problems among parents of children with hearing loss is a child's language delay, regardless of the mode of communication (spoken language or sign language) used by the child [18,21,23–27]. Sarant and Garrard [18], for example, found that higher levels of parental stress were associated with lower language skills of such children, and Quittner, Barker, Cruz, Snell, Grimley, and Botteri [28] reported that higher parental stress was related specifically to spoken language delays in children with hearing loss. A related factor that might affect both parental stress and language skills is CI use. Horsch, Weber, Bertram, and Detrois [29] found that parents of children with hearing loss who used CIs (and thus were more likely to use spoken language) and parents of children without hearing loss reported the same levels of stress, whereas the parents of children with hearing loss without CIs reported higher levels of stress. Spahn et al. [17], in contrast, found heightened parental stress among parents of children with CIs compared to those with hearing aids, particularly during the period surrounding implantation. Beyond stress associated with having a child undergo cochlear implantation surgery, however, children who receive CIs generally have greater hearing losses than those who use hearing aids. Surprisingly, studies evaluating the association between degree hearing loss of the child and parental levels of stress generally have reported no association between these factors [17,23,30,31]. The behavior of children with a disability can impact parent and family life in specific ways. In a study of a culturally diverse sample of children with a range of developmental disabilities in the United States, child factors such as sleeping difficulties and behavioral problems were associated with heightened parental stress [32]. For children with
2. Materials and methods 2.1. Participants A national web-based questionnaire was distributed to Danish parents of children 0–15 years of age with moderate to profound congenital or early acquired hearing loss by The Danish National Centre for Social Research [38]. Potential participants were contacted through the mailing lists of relevant parent organizations and online media (e.g., Facebook groups). In total, 269 participants (parents) completed the survey. Twelve parents of children with hearing loss who were younger than two years of age were excluded because several of the measured predictors and outcomes were not relevant for this age group. Thus, 257 parents were included in this study. See Table 1 for sample characteristics. 2.2. Measures 2.2.1. Child-related variables Parents reported on child's degree of hearing loss, if the child had a CI, if the child had “a long-term health issue or disability in addition to hearing loss”, and the child's level of sign language skill.1 Parents were 1 Data on children's use of spoken language were not collected in this survey [38]. In Denmark there is a strong tradition of using sign language for children with hearing loss and their families. In this context sign language skills was found to be a useful measure for language skills.
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biological parents living together or not) and the frequency of activities with one's partner without their children involved. Next, parents reported if they suffered from anxiety, depression, and/or sleep problems (yes and have consulted a doctor = 1, yes but have not consulted a doctor = 2, no = 3 for each symptom). A composite score of parents' mental health (range score 3–9) was calculated from these variables and used in analyses described below. Finally, parents were asked to what degree the child's behavioral, emotional, and/or social difficulties (if any) was experienced as a burden by the parent and/or the family. For variable details see Table 1.
Table 1 Sample characteristics and descriptive statistics (N = 257). Children Gender Age Hearing loss
Have CI Additional disabilities Sign language skillsa
45.9% (n = 118) female M = 8.8 years (SD = 4.0) 0% (n = 0) 40–54 dB 10.1% (n = 26) 55–69 dB 31.5% (n = 81) 70–90 dB 58.4% (n = 150) > 90 dB 87.5% (n = 225) yes 34.1% (n = 86) yes 19.4% (n = 19) cannot 32.7% (n = 32) very bad 11.2% (n = 11) bad 12.2% (n = 12) ok 16.3% (n = 16) good 8.2% (n = 8) very good
2.3. Analysis In order to address the question of whether parents of children with hearing loss are more or less likely to live together compared to the general population, relationship status (biological parents living together or not) was compared with the general Danish population using data retrieved from Statistics Denmark (http://www.statistikbanken. dk). Possible relations between the child-related variables and the parent-related variables of interest were evaluated by comparing each of the child-related variables with each of the parent-related variables using non-parametric correlations (Gamma rank-correlation). Supplementary analyses of the relations were carried out by building four logistic regression models with parent-related variables (biological parents living together or not, parents having mental health problems or not, parents having activities without children rarely/never or more often (occasionally to almost daily), and parents rating the child's difficulties a challenge for the parent or the family not at all or worse (to some degree to a very high degree)) as binary dependent variables and child-related variables (gender, age, degree hearing loss, CI, additional disability, and SDQ external and internal scores) as independent variables. Because of the many missing data points describing child sign language skills, this variable and the related child-parent sign language skills discrepancy variable were not included in the regressions. All analyses were carried out in the Statistical Package for the Social Sciences (SPSS) version 22. Significance level was set to 0.05.
Parents Gender Sign language skills
Discrepancy child's and parent's sign language skillsa
Child's biological parent living together Frequency of activities with one's partner without children
Anxiety, not consulted doctor Anxiety, consulted doctor Depression, not consulted doctor Depression, consulted doctor Sleep problems, not Consulted doctor Sleep problems, consulted doctor Is the child's behavioral, emotional or social difficulties (if any) a burden for the parents and/or the familyb
85.6% (n = 220) mothers 50.8% (n = 130) cannot 21.9% (n = 56) very bad 10.9% (n = 28) bad 10.2% (n = 26) ok 4.3% (n = 11) good 2.0% (n = 5) very good 46.9% (n = 46) no discrepancy (0) 26.5% (n = 26) very little discrepancy (1) 13.3% (n = 13) little discrepancy (2) 8.2% (n = 8) some discrepancy (3) 5.1% (n = 5) large discrepancy (4) 0.0% (n = 0) very large discrepancy (5) 17.3% (n = 44) no 54.3% (n = 121) rarely/never 42.6% (n = 95) occationally 2.2% (n = 5) 2–3 times a week 0.9% (n = 2) almost daily 7.9% (n = 20) yes 9.9% (n = 25) yes 4.8% (n = 12) yes 9.6% (n = 24) yes 18.7% (n = 47) yes 9.7% (n = 25) yes 27.0% (n = 31) not at all 34.8% (n = 40) to some degree 24.3% (n = 28) a lot 13.9% (n = 16) to a very high degree
3. Results The characteristics of the children described by the parents in this study are presented in Table 1. The most frequently reported level of hearing loss reported was profound hearing loss (> 90 dB) and 90% of children were CI users. Half of the children were reported to be poor or non-users of sign language. However, 20% of children were reported to have good or very good sign language skills. It should be noted that 60% of parents reported that the question regarding children's sign language skills was “not relevant”. All child- and parent-related variables first were examined for associations with children's gender and age. Two significant associations were found. Children in younger age groups were significantly more likely to have parents staying together than those in older age groups (t = −3.001, df = 72.646, p = .004). and older children were reported to have better sign language skills than younger children (F(5, 92) = 2.352, p = .047). Analysis of children's living arrangements revealed that 17.3% (n = 44) of the children in this sample did not live with both biological parents. This rate was significantly lower than for the general population, where 29% of children in the same age group in 2013 did not live with both of their biological parents (χ2 = 17.1, p < .001). Parent reports of their own mental health showed that about 10% had seen a doctor in relation to symptoms of anxiety, depression, and/ or sleeping problems. Half of the couples never participated in activities without their children, but, for about 40% of parents, such activities happened occasionally. For only about 3% of the parents, activities without their children occurred every day or at least 2–3 times a week. One hundred and fifteen parents responded to the question regarding to
a For child's sign language skills parents responded “not relevant” in 159 cases (61.9%) and thus were missing in the further analysis. b Only parents who reported that their child had behavioral, emotional or social difficulties responded to this question (44.7%, n = 115).
also asked to report their own sign language skills, and the discrepancy in sign language skills between the child and the parent was calculated. Next, parents completed the Strengths and Difficulties Questionnaire (SDQ) [39], which assesses behaviors, emotions, and relationships in young children and adolescents and which has been often used in studies of children with hearing loss [40,41]. The 25 items of the SDQ are grouped into an Externalizing score (combining the Hyperactivity and Conduct items) and an Internalizing scale (combining the Peer Problem, Emotional, and Prosocial items) [42,43]. See Table 1 for variable details.
2.2.2. Parent-related variables Parents were asked to report on their relationship status (child's 142
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Is the child's difficulties a challenge for you or the family (range 1–4, 1 = not at all)
.010
-.037 -.059 -.011
-.388** .505**
.343**
-.047
.059 -.053 -.030
.334* -.231**
-.225*
which degree their child's behavioral, emotional, and/or social difficulties were a challenge to the parent or the family: The most frequent response was to some degree (35%) and 14% of parents reported to a very high degree (see Table 1 for details). Some child- and parent-related variables were significantly associated. As can be seen in Table 2, there were no significant associations between any of the parent-related variables and children's degree of hearing loss, sign language skills, or having a CI. However, greater discrepancies in child and parent sign language skills (i.e., less fluent parent-child communication) were significantly associated with parents not staying together. The presence of an additional disability also was significantly associated with how often the parents did couple's activities without children. If parents reported the child had no additional disabilities, the parents more often engaged in activities without their children. Further, the presence of an additional disability was also significantly associated with the degree to which parents reported that the child's difficulties were a challenge for the family. Both SDQ Internalizing and Externalizing scores were significantly associated with all parent-related variables except whether biological parents stayed together or not. Higher Externalizing and Internalizing scores (i.e., more child behavioral difficulties) were significantly associated with parents' reporting lower mental health, lower frequency of couple's activities without children, and the child's difficulties being a greater challenge for the family. The supplementary regression analysis revealed no significant predictors of either the parent-related variables or child behavioral variables. 4. Discussion
-.211**
4.1. Living with biological parents Previous research has indicated that there may be a greater risk of relationship breakdown when challenged by the birth of a child with a disability [3,4]. Past investigations of this issue with regard to families in which there is a child with hearing loss, however, have had mixed results [5,7]. In the current study, Danish children with hearing loss were found to live with both of their biological parents significantly more often than children in the general population, a finding replicating 2007 results in the United States [5,6]. Out of all the childand parent-related variables investigated, only one was associated with deaf children's parents living apart, and that was discrepancy between children's and parents' sign language skills. As about 95% of children with hearing loss are born to parents who are hearing [44] and not likely to be sign language users at the time that a child's hearing loss is diagnosed [45], the need to learn a new language and limited parentchild communication (perhaps with resulting child behavioral issues) apparently adds stress to parental relationships. That is, difficulty communicating within the family may create stress within family units, which could be a contributory factor to relationship breakdowns. Conversely, it is possible that parents who have separated may have more problems in interacting adequately with their child, for example because they, as single parents, have less time for the child.
Gamma rank correlation coefficients, *p < .05, **p < .01
-.011
.071 -.290** .070 .049
-.101 .100 .109 .055 .157 .428*
-.027
-.096
The findings of this study suggest that, at least in this large Danish sample, it is not hearing loss, per se, but other child-related characteristics such as additional disability and behavioral, emotional, and social difficulties that negatively affect parents’ perceptions of family life. While there was a general lack of significant associations between child- and parent-related variables, such null results provide insights into the functioning of (Danish) families with deaf children.
Degree hearing loss (range 1–4, 1 = profound hearing loss) Have a CI (0 = no, 1 = yes) Sign language skills child (range 1–6, 1 = cannot) Sign language skills discrepancy (range 0–5, 0 = no discrepancy) Additional disability (1 = yes, 2 = no) SDQ Externalizing score (high scores more problems) SDQ Internalizing score (high scores more problems
Biological parents staying together (1 = yes, 2 = no)
Table 2 Correlation between parent-related and child-related variables (N = 257).
Mental health parent (range 3–9, 3 = low mental health)
Parents activities without children (range 1–4, 1 = rarely/never)
J. Dammeyer, et al.
4.2. Audiological and linguistic variables The lack of association between degree of hearing loss and parentrelated variables was in line with previous studies examining such 143
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variables and parental stress [17,23,30,31]. This finding is also concordant with a general lack of significant findings between degree of hearing loss and a range of other outcomes related to children's mental health and wellbeing (for a review see [46]). With regard to CI use, this study's null findings are in accordance with some previous studies that reported no difference in parents stress level between children with hearing loss with and without implants [23]. However, contrary to this result was the finding of Horsch et al. [29] that parents of children with CIs experience lower levels of stress compared to parents of children without CIs. How CI use impacts on the wellbeing of parents and families of children with hearing loss is not yet clear, and further research is needed in different contexts to understand how CI use interacts with other factors. Next to quality and type of support in the language rehabilitation process, parents' experience of professional support before and after cochlear implantation might be of importance [47], as would the time at which parents are asked about their stress and wellbeing relative to their progression through the implantation and habilitation process [48]. Instead of audiological factors, some studies have pointed to language delay as a factor explaining parents' stress level [16,27,28]. However, in this study, sign language skills were not found to be associated with any of the parent-related factors. One reason for this nonsignificant finding may be that only sign language skills, and not spoken language skills, were evaluated in this study [38]. As almost 90% of the children in this study had CIs and therefore may have had better skills in spoken language than sign language. Spoken language skills might be more strongly associated with parent's mental health and wellbeing, a possibility worthy of future research. However, the degree of discrepancy between the children's and the parents' sign language skills was significantly associated with whether the biological parents lived together with the child or not. This demonstrates the need for looking not only at the child's language skill but to assess communication skills within the family.
Internalizing behaviors (Peer Problem, Emotional, and Prosocial items). Several limitations of the present study should be mentioned. First, with regard to sample bias, families with difficulties (e.g., parents with mental health difficulties or difficult socio-economic conditions) might have been less likely to complete this survey. Second, only one validated questionnaire was used in this study (the SDQ). Although expensive and time-consuming, we recommend future studies also include validated instruments to measure language skills (both signed and spoken). It would also be beneficial to further validate information provided by parents, for example, obtaining case record data or other convergent data collection describing factors such as children's additional disabilities and parents' mental health. Third, though the sample size was rather large compared to other studies, some of the variables of interest here (e.g., having CI or not) had skewed distributions and others contained many missing data points (e.g., child sign language skill). These may have affected the representativeness of the sample and the robustness of the conclusions drawn. Missing data describing child sign language skills is most likely due to these children not using sign language, although this cannot be confirmed. It is recommended that future studies include equivalent questions examining child and parent sign language and spoken language skills. Finally, the design of the current study was cross-sectional. We recommend that future studies implement a longitudinal design in order to better define and understand causal relationships between child- and parent-related variables. 5. Conclusions The findings of this study highlight the need for researchers to consider a broad range of factors (and interactions among them) beyond the audiological domain in order to understand the extent to which various factors associated with having a child with hearing loss might significantly impact parents and families and ways in which parents and families can best be supported to improve their functioning, wellbeing, and quality of life. This means expanding the loci of investigation from specific, child-related audiological and linguistic factors to a wider range of factors including parent-related demographic, social, and psychological variables. A better understanding of the complex relationships among factors related to the child and the environment will provide a better foundation for creating guidelines for supporting families potentially or actually at risk or in need.
4.3. Activities without children and family challenges Two child characteristics were related to the frequency with which parents engaged in activities without their children: presence of an additional child disability and a child's difficulties being perceived as challenging to the family. Previous studies have shown that the frequency of interaction with one's spouse is positively associated with marital wellbeing [49] in terms of both time spent within the family and time spent exclusively with their spouse [50]. Not surprisingly, couples with children report a lower frequency of exclusively spousal time compared to couples without children [50]. In the present study, there was an association between how frequently parents spent time together without their children and whether the child with hearing loss had an additional disability: Children with an additional disability had parents who engaged in activities without them less frequently. Possibly associated with this, it was also found that where children's difficulties were experienced as a greater burden for the family, parents also spent less time engaging in activities without children. Several previous studies have found that there are special risks of cognitive, social, and mental health challenges faced by children with hearing loss and additional disabilities (for a review see [46]). This might explain why such families reported feeling challenged in the present study. However, it is important to note that the association can also be explained the other way around: If the parents have challenges, for example mental health problems, this can lead to the child developing problems because of a difficult situation with the parent or within the family. In line with the latter suggestion, the present study also found associations between behavior of children with hearing loss and parental reports of their own psychological difficulties. Parents reported that they themselves had more difficulties with anxiety, depression, and/or sleep when their children with hearing loss had difficulties in terms of SDQ Externalizing (Hyperactivity and Conduct items) and/or
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Contents lists available at ScienceDirect
International Journal of Pediatric Otorhinolaryngology journal homepage: www.elsevier.com/locate/ijporl
Childhood hearing loss: Impact on parents and family life a,∗
a
b
Jesper Dammeyer , Anja Toft Hansen , Kathryn Crowe , Marc Marschark a b
T b
University of Copenhagen, Department of Psychology, Denmark National Technical Institute for the Deaf, Rochester Institute of Technology, USA
A R T I C LE I N FO
A B S T R A C T
Keywords: Hearing loss Children Parents Families Well-being
Background: Studies investigating the impact of having a child with hearing loss on the lives of parents and families have shown divergent results. Where some studies have reported that childhood hearing loss is associated with parental mental health problems, such as depression and stress, other studies report no impact on parental mental health and/or wellbeing. Objective: The aim of this study was to examine the association between child-related variables—degree of hearing loss, additional disabilities, sign language abilities, cochlear implants (CI), externalizing and internalizing emotional and behavioral difficulties measured by the Strength and Difficulties Questionnaire (SDQ)—and parent-related variables—parents living together, parents' mental health, spouse activities without children, and parents’ experience of the child as being a burden for the family. Method: Data of 257 parents of children with hearing loss from a national survey were included. Results: Only 18% of the children with hearing loss did not live with both parents, a figure significantly lower than that of the general population. The child variables of degree of hearing loss, having a CI or not, and sign language ability were not significantly associated with any of the parent variables investigated. The child having a disability in addition to hearing loss was found to be significantly associated with the frequency of spouses engaging in activities without children and reports that the child was a burden for the family. Both higher externalizing and internalizing scores on the SDQ were significantly associated with parental mental health problems, frequency of spouse activities without children, and the degree to which the child's difficulties were experienced as a burden for the family. Conclusion: Children's hearing loss, per se, was found not to be significantly related to several key parent and family variables. However, children having additional disabilities and behavioral and emotional difficulties were significant with parent and family variables. This study thus underlines the need for further studies concerning relationships among factors related to childhood hearing loss and various family factors in order to better understand their impact on child development and family life.
1. Introduction How childhood disability impacts family life is an area in which greater understanding is emerging, but much research is needed to fully conceptualize how disability influences parents and families [1]. This is the case for a broad range of disability types, including children with hearing loss and their families, the focus of this paper. From the research available to date, findings are inconclusive regarding if, how, and to what degree a child's disabilities affect parental and family life. One theme that has been investigated for parents of children with a range of disabilities is couples' satisfaction with their relationship and their risk of divorce. Dyson [2] conducted focus group interviews with 11 parents of children with learning disabilities, finding
∗
that these parents were dealing effectively with challenges such as stress and parenting disagreements. Hatton and colleagues' [3] cohort study of children with early cognitive delays, however, reported that the children were less likely to live with both of their biological parents compared to children without cognitive delay. Similarly, in a study involving children with ADHD, Heckel, Clarke, and Barry [4] found that there was a relationship between risk of parental divorce and the presence of a disruptive behavior pattern in their child. Studies reporting on the marital status of parents of children with hearing loss are few, but one study from the United States found that parents of 91% of the 46 children with hearing loss (mean age 12 years) were married or living together [5] compared to about 70% of children in the United States living with both parents in 2007 [6]. A German study of 57 deaf
Corresponding author. University of Copenhagen, Department of Psychology, Øster Farimagsgade 2a, 1353, Copenhagen K, 22808389, Denmark. E-mail address: [email protected] (J. Dammeyer).
https://doi.org/10.1016/j.ijporl.2019.02.027 Received 27 October 2018; Received in revised form 10 January 2019; Accepted 12 February 2019 Available online 15 February 2019 0165-5876/ © 2019 Published by Elsevier B.V.
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hearing loss, Quittner et al. [28] found that parent-reported and/or directly observed child behavior difficulties were significantly related to reports of increased parenting stress. Children with hearing loss themselves have been reported to be at greater risk of experiencing both internalizing (emotional) and externalizing (behavioral) difficulties [33,34]. These difficulties have been found to have a broad range of effects on parents and on family life. The number and type of additional disabilities experienced by a child with hearing loss may also impact their development [35], on their risk of psychosocial difficulties [33], and mental health problems [36]. The extent to which additional disabilities and internalizing and externalizing behaviors of children with hearing loss are associated with parental stress has only been investigated in a few studies. Kushalnagar et al. [5] examined associations between parental depression and the intelligence and behavior adaptability of children with hearing loss being considered for cochlear implantation. A moderate correlation was found between parental depression and children's adaptive behaviors (communication and daily living skills) among children younger than three years of age, but not for children older than three years of age. Van Driessche et al. [37] also investigated children having additional disabilities in a sample of children with hearing loss aged 3–16 years in south India. Additional disability was found not associated with caregiver strain or parental psychological symptoms. In summary, to date there are conflicting findings concerning how childhood hearing loss might affect the parents and family life. This study sought to add to current knowledge by examining the association between a number of child-related and parent-related variables in a large and heterogeneous cohort. The research questions were: (a) Are parents of children with hearing loss more or less likely to live together compared to the general population? (b) Are the child-related variables of degrees of hearing loss, CI, additional disability, levels of sign language skill, level of discrepancy between children's and parents' sign language skills, and levels of externalizing and internalizing behaviors associated with the parent-related variables of parents living together or not, parents' mental health problems, number of spouse activities without children, and the child being experienced as a challenge for the family?
children aged 2–16 years found that 81% of the parents were together [7]. In a different approach, Flaherty [8] focused on the experiences of hearing parents of deaf children before and after diagnosis of their children's hearing loss. She found that mothers and fathers used different coping strategies in response to the diagnosis, and that sometimes these differences could lead to marital tensions. The mental health of parents of children with disabilities, including levels of stress, has been another focus in previous research. Similar to the mixed findings regarding marital status, these studies have yielded contradictory results with respect to whether parenting a child with disabilities is more stressful than parenting a child without disabilities. Increased parental stress has been reported for the parents of children with a wide range of disabilities, including autism spectrum disorder [e.g. [9,10]], developmental disabilities [e.g. [11]], and ADHD [e.g. [12]]. Biswas, Moghaddam, and Tickle [13] completed a critical review of studies identifying factors influencing stress among parents with children with intellectual disabilities. They concluded that those parents could not be seen as a uniform group, and that different factors were important in explaining their levels of stress. These factors included a child's behavioral difficulties, ineffective parental coping strategies, and poor family environments. Studies concerning children with hearing loss similarly yield ambiguous findings concerning parental stress [14]. Some studies have reported a higher stress level among parents with children with hearing loss [15–17]. For example, Sarant and Garrard [18] examined level of stress among 70 parents of 5- to 8-year old children with cochlear implants (CIs) and found a higher level of stress among these parents compared to a normative population. Other studies have not found a higher level of stress among parents with children with hearing loss [19–21]. Pipp-Siegal et al. [21], for example, reported that the 184 mothers of children with hearing loss who participated in their study were slightly but significantly less stressed than mothers of children without hearing loss. Other studies have described a complex relationship among child, parent, and environmental factors [e.g. [22]]. These studies, while not conclusive as to the level of parental stress experienced when parenting a child with a hearing loss, point to a number of child- and parent-related factors that may be important mediators. One factor found to be associated with level of stress and mental health problems among parents of children with hearing loss is a child's language delay, regardless of the mode of communication (spoken language or sign language) used by the child [18,21,23–27]. Sarant and Garrard [18], for example, found that higher levels of parental stress were associated with lower language skills of such children, and Quittner, Barker, Cruz, Snell, Grimley, and Botteri [28] reported that higher parental stress was related specifically to spoken language delays in children with hearing loss. A related factor that might affect both parental stress and language skills is CI use. Horsch, Weber, Bertram, and Detrois [29] found that parents of children with hearing loss who used CIs (and thus were more likely to use spoken language) and parents of children without hearing loss reported the same levels of stress, whereas the parents of children with hearing loss without CIs reported higher levels of stress. Spahn et al. [17], in contrast, found heightened parental stress among parents of children with CIs compared to those with hearing aids, particularly during the period surrounding implantation. Beyond stress associated with having a child undergo cochlear implantation surgery, however, children who receive CIs generally have greater hearing losses than those who use hearing aids. Surprisingly, studies evaluating the association between degree hearing loss of the child and parental levels of stress generally have reported no association between these factors [17,23,30,31]. The behavior of children with a disability can impact parent and family life in specific ways. In a study of a culturally diverse sample of children with a range of developmental disabilities in the United States, child factors such as sleeping difficulties and behavioral problems were associated with heightened parental stress [32]. For children with
2. Materials and methods 2.1. Participants A national web-based questionnaire was distributed to Danish parents of children 0–15 years of age with moderate to profound congenital or early acquired hearing loss by The Danish National Centre for Social Research [38]. Potential participants were contacted through the mailing lists of relevant parent organizations and online media (e.g., Facebook groups). In total, 269 participants (parents) completed the survey. Twelve parents of children with hearing loss who were younger than two years of age were excluded because several of the measured predictors and outcomes were not relevant for this age group. Thus, 257 parents were included in this study. See Table 1 for sample characteristics. 2.2. Measures 2.2.1. Child-related variables Parents reported on child's degree of hearing loss, if the child had a CI, if the child had “a long-term health issue or disability in addition to hearing loss”, and the child's level of sign language skill.1 Parents were 1 Data on children's use of spoken language were not collected in this survey [38]. In Denmark there is a strong tradition of using sign language for children with hearing loss and their families. In this context sign language skills was found to be a useful measure for language skills.
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biological parents living together or not) and the frequency of activities with one's partner without their children involved. Next, parents reported if they suffered from anxiety, depression, and/or sleep problems (yes and have consulted a doctor = 1, yes but have not consulted a doctor = 2, no = 3 for each symptom). A composite score of parents' mental health (range score 3–9) was calculated from these variables and used in analyses described below. Finally, parents were asked to what degree the child's behavioral, emotional, and/or social difficulties (if any) was experienced as a burden by the parent and/or the family. For variable details see Table 1.
Table 1 Sample characteristics and descriptive statistics (N = 257). Children Gender Age Hearing loss
Have CI Additional disabilities Sign language skillsa
45.9% (n = 118) female M = 8.8 years (SD = 4.0) 0% (n = 0) 40–54 dB 10.1% (n = 26) 55–69 dB 31.5% (n = 81) 70–90 dB 58.4% (n = 150) > 90 dB 87.5% (n = 225) yes 34.1% (n = 86) yes 19.4% (n = 19) cannot 32.7% (n = 32) very bad 11.2% (n = 11) bad 12.2% (n = 12) ok 16.3% (n = 16) good 8.2% (n = 8) very good
2.3. Analysis In order to address the question of whether parents of children with hearing loss are more or less likely to live together compared to the general population, relationship status (biological parents living together or not) was compared with the general Danish population using data retrieved from Statistics Denmark (http://www.statistikbanken. dk). Possible relations between the child-related variables and the parent-related variables of interest were evaluated by comparing each of the child-related variables with each of the parent-related variables using non-parametric correlations (Gamma rank-correlation). Supplementary analyses of the relations were carried out by building four logistic regression models with parent-related variables (biological parents living together or not, parents having mental health problems or not, parents having activities without children rarely/never or more often (occasionally to almost daily), and parents rating the child's difficulties a challenge for the parent or the family not at all or worse (to some degree to a very high degree)) as binary dependent variables and child-related variables (gender, age, degree hearing loss, CI, additional disability, and SDQ external and internal scores) as independent variables. Because of the many missing data points describing child sign language skills, this variable and the related child-parent sign language skills discrepancy variable were not included in the regressions. All analyses were carried out in the Statistical Package for the Social Sciences (SPSS) version 22. Significance level was set to 0.05.
Parents Gender Sign language skills
Discrepancy child's and parent's sign language skillsa
Child's biological parent living together Frequency of activities with one's partner without children
Anxiety, not consulted doctor Anxiety, consulted doctor Depression, not consulted doctor Depression, consulted doctor Sleep problems, not Consulted doctor Sleep problems, consulted doctor Is the child's behavioral, emotional or social difficulties (if any) a burden for the parents and/or the familyb
85.6% (n = 220) mothers 50.8% (n = 130) cannot 21.9% (n = 56) very bad 10.9% (n = 28) bad 10.2% (n = 26) ok 4.3% (n = 11) good 2.0% (n = 5) very good 46.9% (n = 46) no discrepancy (0) 26.5% (n = 26) very little discrepancy (1) 13.3% (n = 13) little discrepancy (2) 8.2% (n = 8) some discrepancy (3) 5.1% (n = 5) large discrepancy (4) 0.0% (n = 0) very large discrepancy (5) 17.3% (n = 44) no 54.3% (n = 121) rarely/never 42.6% (n = 95) occationally 2.2% (n = 5) 2–3 times a week 0.9% (n = 2) almost daily 7.9% (n = 20) yes 9.9% (n = 25) yes 4.8% (n = 12) yes 9.6% (n = 24) yes 18.7% (n = 47) yes 9.7% (n = 25) yes 27.0% (n = 31) not at all 34.8% (n = 40) to some degree 24.3% (n = 28) a lot 13.9% (n = 16) to a very high degree
3. Results The characteristics of the children described by the parents in this study are presented in Table 1. The most frequently reported level of hearing loss reported was profound hearing loss (> 90 dB) and 90% of children were CI users. Half of the children were reported to be poor or non-users of sign language. However, 20% of children were reported to have good or very good sign language skills. It should be noted that 60% of parents reported that the question regarding children's sign language skills was “not relevant”. All child- and parent-related variables first were examined for associations with children's gender and age. Two significant associations were found. Children in younger age groups were significantly more likely to have parents staying together than those in older age groups (t = −3.001, df = 72.646, p = .004). and older children were reported to have better sign language skills than younger children (F(5, 92) = 2.352, p = .047). Analysis of children's living arrangements revealed that 17.3% (n = 44) of the children in this sample did not live with both biological parents. This rate was significantly lower than for the general population, where 29% of children in the same age group in 2013 did not live with both of their biological parents (χ2 = 17.1, p < .001). Parent reports of their own mental health showed that about 10% had seen a doctor in relation to symptoms of anxiety, depression, and/ or sleeping problems. Half of the couples never participated in activities without their children, but, for about 40% of parents, such activities happened occasionally. For only about 3% of the parents, activities without their children occurred every day or at least 2–3 times a week. One hundred and fifteen parents responded to the question regarding to
a For child's sign language skills parents responded “not relevant” in 159 cases (61.9%) and thus were missing in the further analysis. b Only parents who reported that their child had behavioral, emotional or social difficulties responded to this question (44.7%, n = 115).
also asked to report their own sign language skills, and the discrepancy in sign language skills between the child and the parent was calculated. Next, parents completed the Strengths and Difficulties Questionnaire (SDQ) [39], which assesses behaviors, emotions, and relationships in young children and adolescents and which has been often used in studies of children with hearing loss [40,41]. The 25 items of the SDQ are grouped into an Externalizing score (combining the Hyperactivity and Conduct items) and an Internalizing scale (combining the Peer Problem, Emotional, and Prosocial items) [42,43]. See Table 1 for variable details.
2.2.2. Parent-related variables Parents were asked to report on their relationship status (child's 142
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Is the child's difficulties a challenge for you or the family (range 1–4, 1 = not at all)
.010
-.037 -.059 -.011
-.388** .505**
.343**
-.047
.059 -.053 -.030
.334* -.231**
-.225*
which degree their child's behavioral, emotional, and/or social difficulties were a challenge to the parent or the family: The most frequent response was to some degree (35%) and 14% of parents reported to a very high degree (see Table 1 for details). Some child- and parent-related variables were significantly associated. As can be seen in Table 2, there were no significant associations between any of the parent-related variables and children's degree of hearing loss, sign language skills, or having a CI. However, greater discrepancies in child and parent sign language skills (i.e., less fluent parent-child communication) were significantly associated with parents not staying together. The presence of an additional disability also was significantly associated with how often the parents did couple's activities without children. If parents reported the child had no additional disabilities, the parents more often engaged in activities without their children. Further, the presence of an additional disability was also significantly associated with the degree to which parents reported that the child's difficulties were a challenge for the family. Both SDQ Internalizing and Externalizing scores were significantly associated with all parent-related variables except whether biological parents stayed together or not. Higher Externalizing and Internalizing scores (i.e., more child behavioral difficulties) were significantly associated with parents' reporting lower mental health, lower frequency of couple's activities without children, and the child's difficulties being a greater challenge for the family. The supplementary regression analysis revealed no significant predictors of either the parent-related variables or child behavioral variables. 4. Discussion
-.211**
4.1. Living with biological parents Previous research has indicated that there may be a greater risk of relationship breakdown when challenged by the birth of a child with a disability [3,4]. Past investigations of this issue with regard to families in which there is a child with hearing loss, however, have had mixed results [5,7]. In the current study, Danish children with hearing loss were found to live with both of their biological parents significantly more often than children in the general population, a finding replicating 2007 results in the United States [5,6]. Out of all the childand parent-related variables investigated, only one was associated with deaf children's parents living apart, and that was discrepancy between children's and parents' sign language skills. As about 95% of children with hearing loss are born to parents who are hearing [44] and not likely to be sign language users at the time that a child's hearing loss is diagnosed [45], the need to learn a new language and limited parentchild communication (perhaps with resulting child behavioral issues) apparently adds stress to parental relationships. That is, difficulty communicating within the family may create stress within family units, which could be a contributory factor to relationship breakdowns. Conversely, it is possible that parents who have separated may have more problems in interacting adequately with their child, for example because they, as single parents, have less time for the child.
Gamma rank correlation coefficients, *p < .05, **p < .01
-.011
.071 -.290** .070 .049
-.101 .100 .109 .055 .157 .428*
-.027
-.096
The findings of this study suggest that, at least in this large Danish sample, it is not hearing loss, per se, but other child-related characteristics such as additional disability and behavioral, emotional, and social difficulties that negatively affect parents’ perceptions of family life. While there was a general lack of significant associations between child- and parent-related variables, such null results provide insights into the functioning of (Danish) families with deaf children.
Degree hearing loss (range 1–4, 1 = profound hearing loss) Have a CI (0 = no, 1 = yes) Sign language skills child (range 1–6, 1 = cannot) Sign language skills discrepancy (range 0–5, 0 = no discrepancy) Additional disability (1 = yes, 2 = no) SDQ Externalizing score (high scores more problems) SDQ Internalizing score (high scores more problems
Biological parents staying together (1 = yes, 2 = no)
Table 2 Correlation between parent-related and child-related variables (N = 257).
Mental health parent (range 3–9, 3 = low mental health)
Parents activities without children (range 1–4, 1 = rarely/never)
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4.2. Audiological and linguistic variables The lack of association between degree of hearing loss and parentrelated variables was in line with previous studies examining such 143
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variables and parental stress [17,23,30,31]. This finding is also concordant with a general lack of significant findings between degree of hearing loss and a range of other outcomes related to children's mental health and wellbeing (for a review see [46]). With regard to CI use, this study's null findings are in accordance with some previous studies that reported no difference in parents stress level between children with hearing loss with and without implants [23]. However, contrary to this result was the finding of Horsch et al. [29] that parents of children with CIs experience lower levels of stress compared to parents of children without CIs. How CI use impacts on the wellbeing of parents and families of children with hearing loss is not yet clear, and further research is needed in different contexts to understand how CI use interacts with other factors. Next to quality and type of support in the language rehabilitation process, parents' experience of professional support before and after cochlear implantation might be of importance [47], as would the time at which parents are asked about their stress and wellbeing relative to their progression through the implantation and habilitation process [48]. Instead of audiological factors, some studies have pointed to language delay as a factor explaining parents' stress level [16,27,28]. However, in this study, sign language skills were not found to be associated with any of the parent-related factors. One reason for this nonsignificant finding may be that only sign language skills, and not spoken language skills, were evaluated in this study [38]. As almost 90% of the children in this study had CIs and therefore may have had better skills in spoken language than sign language. Spoken language skills might be more strongly associated with parent's mental health and wellbeing, a possibility worthy of future research. However, the degree of discrepancy between the children's and the parents' sign language skills was significantly associated with whether the biological parents lived together with the child or not. This demonstrates the need for looking not only at the child's language skill but to assess communication skills within the family.
Internalizing behaviors (Peer Problem, Emotional, and Prosocial items). Several limitations of the present study should be mentioned. First, with regard to sample bias, families with difficulties (e.g., parents with mental health difficulties or difficult socio-economic conditions) might have been less likely to complete this survey. Second, only one validated questionnaire was used in this study (the SDQ). Although expensive and time-consuming, we recommend future studies also include validated instruments to measure language skills (both signed and spoken). It would also be beneficial to further validate information provided by parents, for example, obtaining case record data or other convergent data collection describing factors such as children's additional disabilities and parents' mental health. Third, though the sample size was rather large compared to other studies, some of the variables of interest here (e.g., having CI or not) had skewed distributions and others contained many missing data points (e.g., child sign language skill). These may have affected the representativeness of the sample and the robustness of the conclusions drawn. Missing data describing child sign language skills is most likely due to these children not using sign language, although this cannot be confirmed. It is recommended that future studies include equivalent questions examining child and parent sign language and spoken language skills. Finally, the design of the current study was cross-sectional. We recommend that future studies implement a longitudinal design in order to better define and understand causal relationships between child- and parent-related variables. 5. Conclusions The findings of this study highlight the need for researchers to consider a broad range of factors (and interactions among them) beyond the audiological domain in order to understand the extent to which various factors associated with having a child with hearing loss might significantly impact parents and families and ways in which parents and families can best be supported to improve their functioning, wellbeing, and quality of life. This means expanding the loci of investigation from specific, child-related audiological and linguistic factors to a wider range of factors including parent-related demographic, social, and psychological variables. A better understanding of the complex relationships among factors related to the child and the environment will provide a better foundation for creating guidelines for supporting families potentially or actually at risk or in need.
4.3. Activities without children and family challenges Two child characteristics were related to the frequency with which parents engaged in activities without their children: presence of an additional child disability and a child's difficulties being perceived as challenging to the family. Previous studies have shown that the frequency of interaction with one's spouse is positively associated with marital wellbeing [49] in terms of both time spent within the family and time spent exclusively with their spouse [50]. Not surprisingly, couples with children report a lower frequency of exclusively spousal time compared to couples without children [50]. In the present study, there was an association between how frequently parents spent time together without their children and whether the child with hearing loss had an additional disability: Children with an additional disability had parents who engaged in activities without them less frequently. Possibly associated with this, it was also found that where children's difficulties were experienced as a greater burden for the family, parents also spent less time engaging in activities without children. Several previous studies have found that there are special risks of cognitive, social, and mental health challenges faced by children with hearing loss and additional disabilities (for a review see [46]). This might explain why such families reported feeling challenged in the present study. However, it is important to note that the association can also be explained the other way around: If the parents have challenges, for example mental health problems, this can lead to the child developing problems because of a difficult situation with the parent or within the family. In line with the latter suggestion, the present study also found associations between behavior of children with hearing loss and parental reports of their own psychological difficulties. Parents reported that they themselves had more difficulties with anxiety, depression, and/or sleep when their children with hearing loss had difficulties in terms of SDQ Externalizing (Hyperactivity and Conduct items) and/or
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