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Health related quality of life in parents of children with speech and hearing impairment
International Journal of Pediatric Otorhinolaryngology 78 (2014) 323–329
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Health related quality of life in parents of children with speech and hearing impairment Ivana Aras a,*, Ranko Stevanovic´ b, Sanja Vlahovic´ a, Sinisˇa Stevanovic´ c, Branko Kolaric´ d, Ljiljana Kondic´ a a
Policlinics for Rehabilitation of Hearing and Speech SUVAG, Ljudevita Posavskog 10, 10000 Zagreb, Croatia Croatian National Institute of Public Health, Rockefellerova 7, 10000 Zagreb, Croatia General Hospital Virovitica, Ljudevita Gaja 22, 33000 Virovitica, Croatia d Medical School University of Rijeka, Brac´e Branchetta 20, 51000 Rijeka, Croatia b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 30 July 2013 Received in revised form 2 December 2013 Accepted 4 December 2013 Available online 12 December 2013
Objectives: Hearing impairment and specific language disorder are two entities that seriously affect language acquisition in children and reduce their communication skills. These children require specific treatment and higher levels of care than healthy children. Their language abilities also strongly influence parent–child interactions. The purpose of our study was to evaluate the health-related quality of life (HRQOL) of the parents of hearing-impaired children and the parents of children with speech difficulties (specific language disorder). Methods: Our study subjects included 349 parents (182 mothers and 167 fathers) of preschool-aged children with receptive expressive language disorder and 131 parents (71 mothers and 60 fathers) of children with severe hearing impairment. A control group was composed of 146 parents (82 mothers and 64 fathers) of healthy children of the same age. HRQOL was assessed using the SF-36 questionnaire. Results: For all groups of parents, the mothers had poorer scores compared with the fathers, but large differences were apparent depending on the child’s impairment. In the control group, the scores of the mothers were significantly lower than the fathers’ scores in only two (of eight) health domains. In contrast, the scores were lower in three domains for the mothers of speech-impaired children and in six domains for the mothers of hearing-impaired children, representing the greatest difference between the parents. When compared with the control group, both the mothers and fathers of speech-impaired children scored significantly worse in five health domains. Fathers of hearing-impaired children scored significantly worse than controls in three health domains. The lowest scores, indicating the poorest HRQOL, were observed for mothers of hearing-impaired children, who obtained significantly lower scores than the control mothers in all health domains except the emotional role. Conclusions: The parents of preschool-aged speech-and hearing-impaired children experience poorer HRQOL than parents of healthy children of the same age. Mothers of hearing-impaired children are especially affected, demonstrating a negative impact in almost all health domains. ß 2013 Elsevier Ireland Ltd. All rights reserved.
Keywords: Health related quality of life SF-36 Parents Hearing impairment Speech impairment
1. Introduction Health-related quality of life (HRQOL) is a multidimensional concept that includes the physical, mental, and social functioning of a person. It represents subjective health and focuses on the impact that someone’s health status has on quality of life. In the last 20–30 years, assessing the quality of life has become popular for evaluating the efficacy and efficiency of diagnostic and therapeutic procedures in medicine and as one of the main public
* Corresponding author. Tel.: +385 914110330; fax: +385 14629789. E-mail address: [email protected] (I. Aras). 0165-5876/$ – see front matter ß 2013 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ijporl.2013.12.001
health instruments for estimating the burden of a disease or disability on the quality of life of a certain population [1–3]. It is an accepted parameter in international classification systems such as the WHO Classification of functioning (ICF), where all aspects of a person’s life (including development, participation and environment) are incorporated instead of solely focusing on the diagnosis because a diagnosis reveals little about one’s functional abilities. Identifying the limitations of function offers valuable information that can be used to plan and implement interventions [4]. Significant effort has been invested in constructing practical subjective health measurement tools that are appropriate for widespread use across diverse populations. As a result, several internationally recognized questionnaires have been created [5],
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including the SF-36 Health Survey. This survey measures health concepts that were selected during two large empirical studies, the Medical Outcomes Study and the Health Insurance Experiment. The SF-36 Health Survey was validated by researchers from across the world who were gathered under the International Quality of Life Assessment (IQOLA) Project. This project established norms and documented the translations as required for international use [6]. Health-related quality of life is of significant clinical interest both when dealing with the patient and when including close relatives and caregivers into medical treatment, especially in pediatric cases [7]. Any incompetence or limitation in child development has the potential for causing significant stress for the child’s parents [8–11], although each disease presents unique challenges. While care giving is a normal parental duty, providing the high level of care required by a child with long-term functional limitations can become burdensome and may impact both the physical and mental health of the child’s parents [12]. Specific language disorder and hearing impairment are two distinct entities but have important characteristics in common: they reduce language acquisition ability and verbal communication skills, resulting in limitations in social communication. Consequently, parents experience trouble communicating with their children, especially if there are additional emotional and behavioral problems, which are not unusual in children with hearing or speech disturbances. These problems sometimes develop as a consequence of a frustration arising from not being understood and not being able to communicate clearly. Specific language impairment (SLI) is a common childhood developmental disorder that is characterized by difficulty with language and is not caused by known neurological, sensory, intellectual, or emotional deficit [13]. The estimated prevalence of SLI in kindergarten children is 5–8% [14–17]. Little information is available on the health-related quality of life of the parents of children with SLI. A study by German authors [7] using the SF 36 Health Survey showed that the mothers of speech-impaired children had lower scores than the mothers of healthy children for the majority of subscales, indicating poorer health status. In another study, the same authors found that the mothers also had a higher prevalence of depression compared with the control group [18]. Several other studies that tested maternal stress reported higher stress scores and higher prevalence of stress because of the child’ speech disability [19,20]. However, none of these studies focused on the fathers. According to the Diagnostic and Statistical Manual of Mental Disorders-IV-TR (DSM-IV-TR), specific language impairment is subdivided into expressive language disorder and receptiveexpressive language disorder [21], with the latter being less favorable in terms of symptoms and prognosis. Children with developmental receptive-expressive disorder have significant speech comprehension disturbances, meaning that they understand spoken language at a level that is lower than expected for the child’s general level of intelligence. This disorder can lead to ongoing impairment in an individual’s communication and later academic and social skills [22–24]; thus, it represents a major public health problem. Children with receptive expressive language disorder are also more likely to have additional disorders, such as impairments in motor skills, cognition, attention deficit disorder and emotional behavioral problems [25], and these additional disorders are of greater concern for the mothers than the language delay itself [19]. These additional problems and the overlap between symptoms can confuse parents and sometimes professionals as well, making the differential diagnosis between receptive-expressive language disorder, pervasive disorder, and mental retardation difficult [26].
For the parents of children with severe hearing impairment, communication is also a great challenge because the parents have to learn new strategies rather than rely on intuitive communication [27]. This process of adaptation can result in disrupted interactions that strain parents and children, which may negatively affect parenting roles [28,29]. In the last two decades, this parenting stress in the parents of hearing-impaired preschool children was quite extensively studied, especially in connection with cochlear implantation, but the results of the studies were somewhat inconsistent. Most studies that investigated parenting stress showed that the subjective feeling of distress was greater compared with the parents of healthy children [30–32]. One study that investigated psychic symptoms (employing validated questionnaires) showed that there was a need for psychosocial support in 18% of parents, but an even greater percentage of parents (42%) were highly motivated in favor of psychosocial interventions [33]. However, according to other authors [34,35], mothers of hearing-impaired children showed similar parental distress as a normative group. There are numerous explanations for these differences, including sample size, age at diagnosis, the amount of support provided to the parents, and the measures of stress that were used. Context-specific stress measures showed greater sensitivity, finding significant elevations in parenting stress relative to the hearing population as opposed to general stress measures [36]. Stress level also changes with time. In a longitudinal study comparing mothers of young children, mothers of 2-year-old infants with hearing loss reported high levels of stress, but differences from a normative sample were not found at 3 and 4 years of age [37]. The stress level in parents of hearing-impaired children was perceived as highest immediately after the diagnosis, when parents experienced the greatest loss of the quality of life, but their psychological state tended to stabilize with time and treatment [38]. The data about differences in parental stress regarding the type of the hearing device used for severe hearing impairment (classical hearing aid vs. cochlear implant) are limited and inconsistent. One study reported that the stress level in parents of children with cochlear implants (CI) was similar to the stress level in parents of healthy children, but that the parents of hearing aids (HA) users exhibit increased stress levels [32]. Another study [39] reported increased stress in both groups of parents but with more distress in the parents of CI users, most likely because of the operative procedure, complicated fitting and adaptation process. In the same study, the parents of the CI children showed heightened expectations in comparison with the parents of HA children. Currently, the use of CI in addition to extensive habilitation enable many children with severe hearing impairment to hear and understand verbal language and, at a certain age, to communicate orally in a manner that is similar to their healthy peers. However, these advances have simultaneously raised parental expectations and can thus lead to frustration if desirable outcomes are not achieved. In a study investigating the impact of CI on families, mothers as a group held relatively high expectations with regard to their child’s communication, social and academic abilities following the cochlear implantation [40]. In general, children’s language abilities strongly influence parent–child interactions in both deaf and hearing populations [41]. Parenting stress has been linked to poor child outcomes [42– 44]. Parents of hearing-impaired children with less language report higher levels of parenting stress and perceive their children as being more difficult [36]. The purpose of our study was to estimate the expected negative influence of children’s speech and hearing problems on their parents’ subjective health by measuring parental health-related quality of life and focusing on the physical, emotional and social aspects of this impact.
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2. Subjects
3. Methods
The participants in our study included 349 parents (182 mothers and 167 fathers) of preschool-aged children with speech impairment (receptive-expressive language disorder) and 131 parents (71 mothers and 60 fathers) of children with severe hearing impairment. The control group consisted of 146 parents (82 mothers and 64 fathers) of healthy children without hearing or speech disturbances of the same age. The majority of participants were in couples (mother and father of the same child). In other cases, only one parent answered the questionnaire, or the parent was single. In the group of parents of children with language disorder, there were 165 couples and 19 uncoupled parents; in the group of parents of children with hearing impairment, there were 60 couples and 11 uncoupled parents; and in the control group, there were 64 couples and 18 uncoupled parents. All children with receptive-expressive language disorder were included in intensive group therapy with a speech pathologist for several hours per day on a daily basis in a kindergarten-like setting. Before the therapy, the diagnostic procedure was performed by a team of experts, including an ENT specialist to exclude hearing impairment, a speech therapist to estimate the level of receptive and expressive speech development and a psychologist to estimate verbal and non-verbal mental age. If needed, a psychiatrist and a neuropediatrician were also included in the diagnostic procedure. The receptive speech (verbal comprehension) level was estimated with the commonly used Reynell developmental language scales [45]. The inclusion criteria were one year or more of verbal comprehension delay without a significant delay on mental age, meaning that the non-verbal IQ was higher than 70, as tested with the Brunet Lezine scale [46]. The non-verbal mental age was also at least 7 months older than the age on the Reynell developmental scale. Children with hearing impairment whose parents were included in the study had bilateral average hearing loss above 80 dB, as confirmed by subjective (audiometry) and objective (ASSR, BAER) testing. The majority of these children used cochlear implant, and the rest relied on hearing aids. All children with hearing impairment were included in an extensive habilitation program based on oral language either in the form of group therapy in the kindergarten-like setting or in the form of individual therapy 3–4 times per week. The rest of the diagnostic procedures and inclusion criteria for the parents were similar to the criteria for the group of children with speech disturbances, i.e., parents of children with non-verbal scores less than 70 or with syndromes or additional developmental disorders were excluded from the study.
HRQOL was assessed using the Croatian version of the health status questionnaire SF-36 [5]. SF-36 is a multi-purpose, shortform health survey that consists of 36 questions. It represents a theoretically based and empirically verified operationalization of two general health concepts, physical and psychological, and their two general manifestations, functioning and well-being [47]. Although the questions in SF-36 are easy to understand and answer, a short introduction was given to all participants before they completed it. Each of the questionnaire items refers to one of the following eight different health indicators: physical functioning (PF) – 10 items; role-physical (RP), referring to the limitations in performing important life roles due to physical health – 4 items; bodily pain (BP) – 2 items; general health (GH) – 5 items; energy and vitality (EV) – 4 items; social functioning (SF) – 2 items; roleemotional (RE), referring to the limitations in performing important life roles due to emotional problems – 3 items; and mental health (MH), referring to the absence of anxiety and depression – 5 items [48]. Five questionnaire scales – physical functioning, role-physical, bodily pain, social functioning, and role-emotional – define health as the absence of limitations and inability, so they represent continual and one-dimensional health measures. The three remaining scales – general health, energy-vitality, and mental health – are bipolar, meaning that they measure a much wider range of the negative and positive aspects of health. The physical functioning, role-physical, and bodily pain scales refer to the general factor of physical health; the social functioning, roleemotional, and mental health scales measure psychological health. The vitality and general health scales are moderately connected with both factors. The total result is shown as a profile defined with 8 points that represent the measure of individual aspects of health transformed into a standardized score from 0 (minimum) to 100 (maximum). On all scales, higher results indicate better subjective health. The original results from the health status questionnaire SF-36 were transformed according to the author’s algorithm, resulting in 8 health dimensions. The differences considering those 8 health dimensions between mothers and fathers within the same category (controls, parents of speech-impaired children and parents of hearing-impaired children) were analyzed using the non-parametric Mann–Whitney test. Because the distributions of numerical variables were significantly different from normal distribution, we used nonparametric tests to compare the groups. Then, the same test was used to compare the scores of each category of parents with the control group of the same sex. Statistical analysis was performed using the Stata SE statistical software, version 11.1 (StataCorp LP 4905 Lakeway Drive, Texas, USA).
Table 1 Medians and interquartile range (in brackets) of scores for eight health dimensions for mothers and fathers in all groups of parents, and differences between male and female participants within the same group. Control group
PF RP RE SF MH EV BP GH
97.50 100.00 100.00 94.00 76.00 65.00 84.00 82.00
Speech impairment Female
Male (13.75) (0.00) (0.00) (12.00) (23.00) (22.50) (26.00) (17.25)
95.00 100.00 100.00 88.00 76.00 65.00 84.00 82.00
(10.00) (0.00) (0.00) (25.00) (20.00) (20.00) (48.50) (24.00)
p
Male
0.555 0.009 0.055 0.021 0.968 0.880 0.150 0.849
85.00 100.00 100.00 87.50 72.00 65.00 80.00 72.00
Hearing impairment Female
(40.00) (25.00) (0.00) (25.00) (12.00) (20.00) (30.00) (25.00)
85.00 100.00 100.00 87.50 72.00 65.00 80.00 72.00
(45.00) (50.00) (33.33) (25.00) (20.00) (25.00) (30.00) (25.00)
p
Male
0.971 0.022 0.003 0.082 0.135 0.020 0.047 0.861
95.00 100.00 100.00 87.50 74.00 65.00 80.00 72.00
Female (25.00) (0.00) (0.00) (25.00) (16.00) (18.75) (30.00) (26.00)
90.00 100.00 100.00 75.00 68.00 60.00 60.00 67.00
p (20.00) (25.00) (33.33) (37.50) (20.00) (20.00) (40.00) (20.00)
0.416 0.003 0.006 0.028 0.012 0.003 0.010 0.211
PF – physical functioning; RP – role physical; RE – role emotional; SF – social functioning; MH – mental health; EV – energy vitality; BP – bodily pain; GH – general health.
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4. Results
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Table 1 shows medians and interquartile range of scores for eight health dimensions for mothers and fathers in all groups of parents, and differences between male and female participants with in the same group. Comparing the HRQOL in the mothers and fathers of the control group, we found a significant difference (p < 0.05) in two of the eight health parameters. Women scored significantly worse on role physical (RP) and social functioning (SF). In the group of parents of children with speech impairment, there were significant differences in the scores for male and female participants (p < 0.05) for several health dimensions. Mothers scored significantly worse in role physical (RP), role emotional (RE), energy vitality (EV) and pain (BP), meaning that their HRQOL is worse in several physical and emotional aspects, even though they have a similar parenting situation as the fathers. In the group of parents of children with hearing impairment, the differences in scores for male and female participants were even more prominent. In this group, the mothers scored significantly worse (p < 0.05) in almost all SF-36 health dimensions, except physical functioning (PF) and general health perception (GH), meaning that their HRQOL compared with the HRQOL of fathers of the same group of children is worse in the physical, emotional and social aspects of life. Because of these differences in SF36 scores for the male and female populations, we separately compared the mothers and fathers of each group with the controls. Fig. 1 shows the comparison between mothers of children with speech impairment and the control mothers. The mothers of speech-impaired children scored significantly worse (p < 0.05) than controls in physical functioning (PF), role physical (RP), social functioning (SF), pain (BP) and general health perception (GH). For the same health dimensions, the fathers of speech-impaired children also scored significantly worse than the fathers of healthy children (Fig. 2). Fig. 3 shows the comparison between mothers of hearingimpaired children and the controls. The mothers of hearingimpaired children scored significantly worse (p < 0.05) than control mothers in all health dimensions except role emotional (RE). Fathers of hearing-impaired children scored significantly worse than control fathers in social functioning (SF), pain (BP) and general health perception (GH), as shown in Fig. 4.
100 90
80 70 60 50 40 30 20 10 0
PF
RP
RE
SF
MH
EV
BP
GH
Fig. 2. Comparison between fathers of children with speech impairment (left bar) and the control fathers (right bar). For legend see Fig. 1. SF-36 health dimensions in which fathers of speech-impaired children scored significantly worse (p < 0.05) than control fathers are marked by thick lines.
5. Discussion The results of this study show that the HRQOL is worse in both groups of parents of children with disabilities. In the control group of parents, mothers scored significantly worse than fathers for two health dimensions: role physical (RP) and social functioning (SF), which was expected. In the HRQOL study that was conducted approximately 10 years ago, which used and tested the Croatian version of SF-36 Health Survey for the general Croatian population, women scored significantly worse for the same two dimensions plus physical functioning (PF) and role emotional (RE) [5]. We included a control group in our study instead of comparing the results with the general population not only because of the age of the participants but also because of the parenting situation and the location. The results in this study could be slightly biased because we could not perform correction for dependent data during the statistical analysis, although most subjects were couples. We have chosen to present the data divided by gender to minimize the potential effect of the interdependency of married couples. Thus, we performed separate measurements of the HRQOL for mothers and fathers, hypothesizing that the disability of a child would not equally influence both parents, and our results confirmed this hypothesis. The somewhat poorer quality of life that is generally present in the female population is even more 100
80
90
70
80
60
70
50
60
40
50
30
40
20
30
10 0
90
20 PF
RP
RE
SF
MH
EV
BP
GH
Fig. 1. Comparison between mothers of children with speech impairment (left bar) and the control mothers (right bar). Legend: PF – physical functioning; RP – role physical; RE – role emotional; SF – social functioning; MH – mental health; EV – energy vitality; BP – bodily pain; GH – general health. SF-36 health dimensions in which mothers of speech-impaired children scored significantly worse (p < 0.05) than control mothers are marked by thick lines.
10 0
PF
RP
RE
SF
MH
EV
BP
GH
Fig. 3. Comparison between mothers of children with hearing impairment (left bar) and the control mothers (right bar). For legend see Fig. 1. SF-36 health dimensions in which mothers of hearing-impaired children scored significantly worse (p < 0.05) than control mothers are marked by thick lines.
I. Aras et al. / International Journal of Pediatric Otorhinolaryngology 78 (2014) 323–329
100 90 80 70 60 50 40 30 20 10 0
PF
RP
RE
SF
MH
EV
BP
GH
Fig. 4. Comparison between fathers of children with hearing impairment (left bar) and the control fathers (right bar). For legend see Fig. 1. SF-36 health dimensions in which fathers of hearing-impaired children scored significantly worse (p < 0.05) than control fathers are marked by thick lines.
prominent if their child has language or hearing problems. From the medical perspective it would be difficult to estimate which of the disorders studied herein creates more obstacles for the child’s future development, communication and acceptance in their social environment, which are some of the parent’s greatest concerns. However according to our results, the mothers of hearing-impaired children are the most vulnerable group. The extent of the difference between them and the fathers of hearing-impaired children (significant in six health dimensions) is also greater than the difference between mothers and fathers of speech-impaired children (significant in four dimensions). In contrast, the fathers of hearing-impaired children scored better than the fathers of speech impaired children, but mainly in the subscales that describe physical health. We hypothesize that the more difficult the perceived problem, the greater the differences between the male and female populations. In preschool-aged children, the hearing impairment is usually perceived as being more difficult, including the use of a hearing aid or cochlear implant, which could be experienced as a kind of a stigma. Many previous studies have shown that parents’ reaction, emotional states and behaviors toward a disabled child are different for mothers and fathers and vary according to the child’s problems. Among the parents of children with disabilities, parents of children with autism and mental deficiency have been more extensively studied so far. Half of mothers of autistic children and 45% of mothers of children with intellectual disabilities have elevated depression scores, whereas the fathers of the same children showed normal depression scores [49]. Mothers of disabled children have more negative emotional states and lack positive feelings. When assessing the time spent with the child, the mothers reported longer involvement with the children than the fathers for both disabled and healthy children [50,51]. Furthermore, the mothers’ greater involvement seems to be related to care taking (meals, bathing, toileting, bedtime routine), not educating or playing, which are more satisfying activities. Taking care of the health of parents with children who have speech and hearing disturbances is important not only for the parents but also for their children and their speech communication development. The mother’s emotional state is of particular importance, especially for young children. Infants’ receptive language development and emotional development is influenced by the mother’s depressive symptoms [52,53]. Furthermore, prenatal depressed maternal mood, particularly serotonin reuptake inhibitors exposure, alters neural plasticity and shifts sensitive periods during perceptual development, thus changing developmental milestones on certain infant speech perception
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tasks during the first year of life [54]. Similar changes occur in hearing impaired children. Maternal stress is associated with fewer words produced at 18–24 months and increased scores for behavior problems [55,56]. Of course, a specific health disorder cannot be identified by the SF-36 questionnaire, but this survey still provides a global assessment of physical and mental wellbeing, identifies weak domains, and highlights certain protective aspects. In our study, the subjective health of the mothers of speechimpaired children was in general worse than the subjective health of their spouses and female controls. The only previous study focused on this topic that used the same instrument (SF-36) was performed in Germany [7], but only included mothers. For the fathers of speech-impaired children, no data about quality of life has yet been published. The subjective health of the mothers of speech-impaired children in our study was affected in fewer domains. Unlike the mothers in the German study, our mothers did not differ significantly from the control mothers on role emotional (RE) and mental health (MH), two dimensions that measure psychological health. When observing a third dimension that measures psychological health – social functioning (SF), they did not score significantly worse than the fathers of speech-impaired children, (although they did score worse than the controls). These data indicate that their psychological health was not as negatively affected as expected, leading us to conclude that certain protective factors were present. One potential factor could be the kind of treatment that their children received. All speech-impaired children in our study were included in a medically supervised group therapy in a kindergarten-like setting in the Polyclinic for Rehabilitation of Listening and Speech (SUVAG) using verbotonal method [57–62]. The groups of children were formed based on each child’s diagnosis (in this case, receptive-expressive language disorder, DSM F80.2). This therapy is intensive and conducted by speech and hearing pathologists on a daily basis for several hours per day. Parents and children have easy access to medical and other experts, and they can socialize with other parents who have similar problems. Regardless of the patient’s socioeconomic status, this treatment is supported by the community and health insurance system, so there is no need for extra ‘‘out of pocket’’ expenses. Thus, most of the mothers expressed great satisfaction with the treatment of their child in this institution, indicating that they feel like they have adequate support and that their children are being cared for. This support is important because higher levels of perceived social support corresponded with lower stress among parents [63]. Mothers of hearing-impaired children generally had the lowest score of all the groups investigated in our study, indicating significantly affected quality of life in the physical, emotional and social aspects. The difference between the mothers and fathers of the same children is also greater than in the other groups. There could be several reasons for this discrepancy: some of the children were still in the process of individual habilitation and hearing aid or cochlear implant fitting. This early post-diagnosis or postoperative phase is a highly stressful period for parents of hearingimpaired children [38]. After this phase (which can last for several years because of the young age of the children and the specific needs of those procedures), some of the children, especially those with good hearing and speech development, managed to join regular kindergarten; thus, we lost some of our star patients and their parents during the study. Children with somewhat slower hearing and speech development or those who were diagnosed and operated later usually join the therapy in our kindergarten eventually under the same conditions as speech-impaired children, but in different groups. This study describes the HRQOL or subjective health of parents of preschool-aged children with speech and hearing difficulties.
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However, parenting situation could differ during the school period, when some of hearing-impaired children, especially those who are successful cochlear implant users have already acquired language skills that enable them to easily follow mainstream schools. In contrast, children with developmental speech difficulties often continue to have problems with understanding speech and reading and writing skills. In a study investigating school-aged children four years after a pre-school diagnosis of developmental or language developmental delay, the authors found poor psychosocial health as a common comorbidity. Almost half of their parents showed clinically significant levels of parenting stress [64].
6. Conclusion The data obtained in this study allow us to conclude that the parents of pre-school-aged speech-and hearing-impaired children experience poorer HRQOL than the parents of healthy children of the same age. Mothers had poorer results than fathers in all groups, but the mothers of severely hearing-impaired children are especially affected, demonstrating a negative impact in almost all health domains. Knowing that the parents’, especially the mother’s, well-being is an important cofactor for the child development, these results can help inform health policies that would understand parents’ problems, the importance of protective factors and the interventions needed to prevent the obvious distress in parents from reaching critical levels that would negatively affect their child’s development. In the future, further studies should be performed to evaluate the timeline of the influence of a child’s language or hearing impairment on the parent’s HRQOL throughout the school period.
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Contents lists available at ScienceDirect
International Journal of Pediatric Otorhinolaryngology journal homepage: www.elsevier.com/locate/ijporl
Health related quality of life in parents of children with speech and hearing impairment Ivana Aras a,*, Ranko Stevanovic´ b, Sanja Vlahovic´ a, Sinisˇa Stevanovic´ c, Branko Kolaric´ d, Ljiljana Kondic´ a a
Policlinics for Rehabilitation of Hearing and Speech SUVAG, Ljudevita Posavskog 10, 10000 Zagreb, Croatia Croatian National Institute of Public Health, Rockefellerova 7, 10000 Zagreb, Croatia General Hospital Virovitica, Ljudevita Gaja 22, 33000 Virovitica, Croatia d Medical School University of Rijeka, Brac´e Branchetta 20, 51000 Rijeka, Croatia b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 30 July 2013 Received in revised form 2 December 2013 Accepted 4 December 2013 Available online 12 December 2013
Objectives: Hearing impairment and specific language disorder are two entities that seriously affect language acquisition in children and reduce their communication skills. These children require specific treatment and higher levels of care than healthy children. Their language abilities also strongly influence parent–child interactions. The purpose of our study was to evaluate the health-related quality of life (HRQOL) of the parents of hearing-impaired children and the parents of children with speech difficulties (specific language disorder). Methods: Our study subjects included 349 parents (182 mothers and 167 fathers) of preschool-aged children with receptive expressive language disorder and 131 parents (71 mothers and 60 fathers) of children with severe hearing impairment. A control group was composed of 146 parents (82 mothers and 64 fathers) of healthy children of the same age. HRQOL was assessed using the SF-36 questionnaire. Results: For all groups of parents, the mothers had poorer scores compared with the fathers, but large differences were apparent depending on the child’s impairment. In the control group, the scores of the mothers were significantly lower than the fathers’ scores in only two (of eight) health domains. In contrast, the scores were lower in three domains for the mothers of speech-impaired children and in six domains for the mothers of hearing-impaired children, representing the greatest difference between the parents. When compared with the control group, both the mothers and fathers of speech-impaired children scored significantly worse in five health domains. Fathers of hearing-impaired children scored significantly worse than controls in three health domains. The lowest scores, indicating the poorest HRQOL, were observed for mothers of hearing-impaired children, who obtained significantly lower scores than the control mothers in all health domains except the emotional role. Conclusions: The parents of preschool-aged speech-and hearing-impaired children experience poorer HRQOL than parents of healthy children of the same age. Mothers of hearing-impaired children are especially affected, demonstrating a negative impact in almost all health domains. ß 2013 Elsevier Ireland Ltd. All rights reserved.
Keywords: Health related quality of life SF-36 Parents Hearing impairment Speech impairment
1. Introduction Health-related quality of life (HRQOL) is a multidimensional concept that includes the physical, mental, and social functioning of a person. It represents subjective health and focuses on the impact that someone’s health status has on quality of life. In the last 20–30 years, assessing the quality of life has become popular for evaluating the efficacy and efficiency of diagnostic and therapeutic procedures in medicine and as one of the main public
* Corresponding author. Tel.: +385 914110330; fax: +385 14629789. E-mail address: [email protected] (I. Aras). 0165-5876/$ – see front matter ß 2013 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ijporl.2013.12.001
health instruments for estimating the burden of a disease or disability on the quality of life of a certain population [1–3]. It is an accepted parameter in international classification systems such as the WHO Classification of functioning (ICF), where all aspects of a person’s life (including development, participation and environment) are incorporated instead of solely focusing on the diagnosis because a diagnosis reveals little about one’s functional abilities. Identifying the limitations of function offers valuable information that can be used to plan and implement interventions [4]. Significant effort has been invested in constructing practical subjective health measurement tools that are appropriate for widespread use across diverse populations. As a result, several internationally recognized questionnaires have been created [5],
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including the SF-36 Health Survey. This survey measures health concepts that were selected during two large empirical studies, the Medical Outcomes Study and the Health Insurance Experiment. The SF-36 Health Survey was validated by researchers from across the world who were gathered under the International Quality of Life Assessment (IQOLA) Project. This project established norms and documented the translations as required for international use [6]. Health-related quality of life is of significant clinical interest both when dealing with the patient and when including close relatives and caregivers into medical treatment, especially in pediatric cases [7]. Any incompetence or limitation in child development has the potential for causing significant stress for the child’s parents [8–11], although each disease presents unique challenges. While care giving is a normal parental duty, providing the high level of care required by a child with long-term functional limitations can become burdensome and may impact both the physical and mental health of the child’s parents [12]. Specific language disorder and hearing impairment are two distinct entities but have important characteristics in common: they reduce language acquisition ability and verbal communication skills, resulting in limitations in social communication. Consequently, parents experience trouble communicating with their children, especially if there are additional emotional and behavioral problems, which are not unusual in children with hearing or speech disturbances. These problems sometimes develop as a consequence of a frustration arising from not being understood and not being able to communicate clearly. Specific language impairment (SLI) is a common childhood developmental disorder that is characterized by difficulty with language and is not caused by known neurological, sensory, intellectual, or emotional deficit [13]. The estimated prevalence of SLI in kindergarten children is 5–8% [14–17]. Little information is available on the health-related quality of life of the parents of children with SLI. A study by German authors [7] using the SF 36 Health Survey showed that the mothers of speech-impaired children had lower scores than the mothers of healthy children for the majority of subscales, indicating poorer health status. In another study, the same authors found that the mothers also had a higher prevalence of depression compared with the control group [18]. Several other studies that tested maternal stress reported higher stress scores and higher prevalence of stress because of the child’ speech disability [19,20]. However, none of these studies focused on the fathers. According to the Diagnostic and Statistical Manual of Mental Disorders-IV-TR (DSM-IV-TR), specific language impairment is subdivided into expressive language disorder and receptiveexpressive language disorder [21], with the latter being less favorable in terms of symptoms and prognosis. Children with developmental receptive-expressive disorder have significant speech comprehension disturbances, meaning that they understand spoken language at a level that is lower than expected for the child’s general level of intelligence. This disorder can lead to ongoing impairment in an individual’s communication and later academic and social skills [22–24]; thus, it represents a major public health problem. Children with receptive expressive language disorder are also more likely to have additional disorders, such as impairments in motor skills, cognition, attention deficit disorder and emotional behavioral problems [25], and these additional disorders are of greater concern for the mothers than the language delay itself [19]. These additional problems and the overlap between symptoms can confuse parents and sometimes professionals as well, making the differential diagnosis between receptive-expressive language disorder, pervasive disorder, and mental retardation difficult [26].
For the parents of children with severe hearing impairment, communication is also a great challenge because the parents have to learn new strategies rather than rely on intuitive communication [27]. This process of adaptation can result in disrupted interactions that strain parents and children, which may negatively affect parenting roles [28,29]. In the last two decades, this parenting stress in the parents of hearing-impaired preschool children was quite extensively studied, especially in connection with cochlear implantation, but the results of the studies were somewhat inconsistent. Most studies that investigated parenting stress showed that the subjective feeling of distress was greater compared with the parents of healthy children [30–32]. One study that investigated psychic symptoms (employing validated questionnaires) showed that there was a need for psychosocial support in 18% of parents, but an even greater percentage of parents (42%) were highly motivated in favor of psychosocial interventions [33]. However, according to other authors [34,35], mothers of hearing-impaired children showed similar parental distress as a normative group. There are numerous explanations for these differences, including sample size, age at diagnosis, the amount of support provided to the parents, and the measures of stress that were used. Context-specific stress measures showed greater sensitivity, finding significant elevations in parenting stress relative to the hearing population as opposed to general stress measures [36]. Stress level also changes with time. In a longitudinal study comparing mothers of young children, mothers of 2-year-old infants with hearing loss reported high levels of stress, but differences from a normative sample were not found at 3 and 4 years of age [37]. The stress level in parents of hearing-impaired children was perceived as highest immediately after the diagnosis, when parents experienced the greatest loss of the quality of life, but their psychological state tended to stabilize with time and treatment [38]. The data about differences in parental stress regarding the type of the hearing device used for severe hearing impairment (classical hearing aid vs. cochlear implant) are limited and inconsistent. One study reported that the stress level in parents of children with cochlear implants (CI) was similar to the stress level in parents of healthy children, but that the parents of hearing aids (HA) users exhibit increased stress levels [32]. Another study [39] reported increased stress in both groups of parents but with more distress in the parents of CI users, most likely because of the operative procedure, complicated fitting and adaptation process. In the same study, the parents of the CI children showed heightened expectations in comparison with the parents of HA children. Currently, the use of CI in addition to extensive habilitation enable many children with severe hearing impairment to hear and understand verbal language and, at a certain age, to communicate orally in a manner that is similar to their healthy peers. However, these advances have simultaneously raised parental expectations and can thus lead to frustration if desirable outcomes are not achieved. In a study investigating the impact of CI on families, mothers as a group held relatively high expectations with regard to their child’s communication, social and academic abilities following the cochlear implantation [40]. In general, children’s language abilities strongly influence parent–child interactions in both deaf and hearing populations [41]. Parenting stress has been linked to poor child outcomes [42– 44]. Parents of hearing-impaired children with less language report higher levels of parenting stress and perceive their children as being more difficult [36]. The purpose of our study was to estimate the expected negative influence of children’s speech and hearing problems on their parents’ subjective health by measuring parental health-related quality of life and focusing on the physical, emotional and social aspects of this impact.
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2. Subjects
3. Methods
The participants in our study included 349 parents (182 mothers and 167 fathers) of preschool-aged children with speech impairment (receptive-expressive language disorder) and 131 parents (71 mothers and 60 fathers) of children with severe hearing impairment. The control group consisted of 146 parents (82 mothers and 64 fathers) of healthy children without hearing or speech disturbances of the same age. The majority of participants were in couples (mother and father of the same child). In other cases, only one parent answered the questionnaire, or the parent was single. In the group of parents of children with language disorder, there were 165 couples and 19 uncoupled parents; in the group of parents of children with hearing impairment, there were 60 couples and 11 uncoupled parents; and in the control group, there were 64 couples and 18 uncoupled parents. All children with receptive-expressive language disorder were included in intensive group therapy with a speech pathologist for several hours per day on a daily basis in a kindergarten-like setting. Before the therapy, the diagnostic procedure was performed by a team of experts, including an ENT specialist to exclude hearing impairment, a speech therapist to estimate the level of receptive and expressive speech development and a psychologist to estimate verbal and non-verbal mental age. If needed, a psychiatrist and a neuropediatrician were also included in the diagnostic procedure. The receptive speech (verbal comprehension) level was estimated with the commonly used Reynell developmental language scales [45]. The inclusion criteria were one year or more of verbal comprehension delay without a significant delay on mental age, meaning that the non-verbal IQ was higher than 70, as tested with the Brunet Lezine scale [46]. The non-verbal mental age was also at least 7 months older than the age on the Reynell developmental scale. Children with hearing impairment whose parents were included in the study had bilateral average hearing loss above 80 dB, as confirmed by subjective (audiometry) and objective (ASSR, BAER) testing. The majority of these children used cochlear implant, and the rest relied on hearing aids. All children with hearing impairment were included in an extensive habilitation program based on oral language either in the form of group therapy in the kindergarten-like setting or in the form of individual therapy 3–4 times per week. The rest of the diagnostic procedures and inclusion criteria for the parents were similar to the criteria for the group of children with speech disturbances, i.e., parents of children with non-verbal scores less than 70 or with syndromes or additional developmental disorders were excluded from the study.
HRQOL was assessed using the Croatian version of the health status questionnaire SF-36 [5]. SF-36 is a multi-purpose, shortform health survey that consists of 36 questions. It represents a theoretically based and empirically verified operationalization of two general health concepts, physical and psychological, and their two general manifestations, functioning and well-being [47]. Although the questions in SF-36 are easy to understand and answer, a short introduction was given to all participants before they completed it. Each of the questionnaire items refers to one of the following eight different health indicators: physical functioning (PF) – 10 items; role-physical (RP), referring to the limitations in performing important life roles due to physical health – 4 items; bodily pain (BP) – 2 items; general health (GH) – 5 items; energy and vitality (EV) – 4 items; social functioning (SF) – 2 items; roleemotional (RE), referring to the limitations in performing important life roles due to emotional problems – 3 items; and mental health (MH), referring to the absence of anxiety and depression – 5 items [48]. Five questionnaire scales – physical functioning, role-physical, bodily pain, social functioning, and role-emotional – define health as the absence of limitations and inability, so they represent continual and one-dimensional health measures. The three remaining scales – general health, energy-vitality, and mental health – are bipolar, meaning that they measure a much wider range of the negative and positive aspects of health. The physical functioning, role-physical, and bodily pain scales refer to the general factor of physical health; the social functioning, roleemotional, and mental health scales measure psychological health. The vitality and general health scales are moderately connected with both factors. The total result is shown as a profile defined with 8 points that represent the measure of individual aspects of health transformed into a standardized score from 0 (minimum) to 100 (maximum). On all scales, higher results indicate better subjective health. The original results from the health status questionnaire SF-36 were transformed according to the author’s algorithm, resulting in 8 health dimensions. The differences considering those 8 health dimensions between mothers and fathers within the same category (controls, parents of speech-impaired children and parents of hearing-impaired children) were analyzed using the non-parametric Mann–Whitney test. Because the distributions of numerical variables were significantly different from normal distribution, we used nonparametric tests to compare the groups. Then, the same test was used to compare the scores of each category of parents with the control group of the same sex. Statistical analysis was performed using the Stata SE statistical software, version 11.1 (StataCorp LP 4905 Lakeway Drive, Texas, USA).
Table 1 Medians and interquartile range (in brackets) of scores for eight health dimensions for mothers and fathers in all groups of parents, and differences between male and female participants within the same group. Control group
PF RP RE SF MH EV BP GH
97.50 100.00 100.00 94.00 76.00 65.00 84.00 82.00
Speech impairment Female
Male (13.75) (0.00) (0.00) (12.00) (23.00) (22.50) (26.00) (17.25)
95.00 100.00 100.00 88.00 76.00 65.00 84.00 82.00
(10.00) (0.00) (0.00) (25.00) (20.00) (20.00) (48.50) (24.00)
p
Male
0.555 0.009 0.055 0.021 0.968 0.880 0.150 0.849
85.00 100.00 100.00 87.50 72.00 65.00 80.00 72.00
Hearing impairment Female
(40.00) (25.00) (0.00) (25.00) (12.00) (20.00) (30.00) (25.00)
85.00 100.00 100.00 87.50 72.00 65.00 80.00 72.00
(45.00) (50.00) (33.33) (25.00) (20.00) (25.00) (30.00) (25.00)
p
Male
0.971 0.022 0.003 0.082 0.135 0.020 0.047 0.861
95.00 100.00 100.00 87.50 74.00 65.00 80.00 72.00
Female (25.00) (0.00) (0.00) (25.00) (16.00) (18.75) (30.00) (26.00)
90.00 100.00 100.00 75.00 68.00 60.00 60.00 67.00
p (20.00) (25.00) (33.33) (37.50) (20.00) (20.00) (40.00) (20.00)
0.416 0.003 0.006 0.028 0.012 0.003 0.010 0.211
PF – physical functioning; RP – role physical; RE – role emotional; SF – social functioning; MH – mental health; EV – energy vitality; BP – bodily pain; GH – general health.
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4. Results
100
Table 1 shows medians and interquartile range of scores for eight health dimensions for mothers and fathers in all groups of parents, and differences between male and female participants with in the same group. Comparing the HRQOL in the mothers and fathers of the control group, we found a significant difference (p < 0.05) in two of the eight health parameters. Women scored significantly worse on role physical (RP) and social functioning (SF). In the group of parents of children with speech impairment, there were significant differences in the scores for male and female participants (p < 0.05) for several health dimensions. Mothers scored significantly worse in role physical (RP), role emotional (RE), energy vitality (EV) and pain (BP), meaning that their HRQOL is worse in several physical and emotional aspects, even though they have a similar parenting situation as the fathers. In the group of parents of children with hearing impairment, the differences in scores for male and female participants were even more prominent. In this group, the mothers scored significantly worse (p < 0.05) in almost all SF-36 health dimensions, except physical functioning (PF) and general health perception (GH), meaning that their HRQOL compared with the HRQOL of fathers of the same group of children is worse in the physical, emotional and social aspects of life. Because of these differences in SF36 scores for the male and female populations, we separately compared the mothers and fathers of each group with the controls. Fig. 1 shows the comparison between mothers of children with speech impairment and the control mothers. The mothers of speech-impaired children scored significantly worse (p < 0.05) than controls in physical functioning (PF), role physical (RP), social functioning (SF), pain (BP) and general health perception (GH). For the same health dimensions, the fathers of speech-impaired children also scored significantly worse than the fathers of healthy children (Fig. 2). Fig. 3 shows the comparison between mothers of hearingimpaired children and the controls. The mothers of hearingimpaired children scored significantly worse (p < 0.05) than control mothers in all health dimensions except role emotional (RE). Fathers of hearing-impaired children scored significantly worse than control fathers in social functioning (SF), pain (BP) and general health perception (GH), as shown in Fig. 4.
100 90
80 70 60 50 40 30 20 10 0
PF
RP
RE
SF
MH
EV
BP
GH
Fig. 2. Comparison between fathers of children with speech impairment (left bar) and the control fathers (right bar). For legend see Fig. 1. SF-36 health dimensions in which fathers of speech-impaired children scored significantly worse (p < 0.05) than control fathers are marked by thick lines.
5. Discussion The results of this study show that the HRQOL is worse in both groups of parents of children with disabilities. In the control group of parents, mothers scored significantly worse than fathers for two health dimensions: role physical (RP) and social functioning (SF), which was expected. In the HRQOL study that was conducted approximately 10 years ago, which used and tested the Croatian version of SF-36 Health Survey for the general Croatian population, women scored significantly worse for the same two dimensions plus physical functioning (PF) and role emotional (RE) [5]. We included a control group in our study instead of comparing the results with the general population not only because of the age of the participants but also because of the parenting situation and the location. The results in this study could be slightly biased because we could not perform correction for dependent data during the statistical analysis, although most subjects were couples. We have chosen to present the data divided by gender to minimize the potential effect of the interdependency of married couples. Thus, we performed separate measurements of the HRQOL for mothers and fathers, hypothesizing that the disability of a child would not equally influence both parents, and our results confirmed this hypothesis. The somewhat poorer quality of life that is generally present in the female population is even more 100
80
90
70
80
60
70
50
60
40
50
30
40
20
30
10 0
90
20 PF
RP
RE
SF
MH
EV
BP
GH
Fig. 1. Comparison between mothers of children with speech impairment (left bar) and the control mothers (right bar). Legend: PF – physical functioning; RP – role physical; RE – role emotional; SF – social functioning; MH – mental health; EV – energy vitality; BP – bodily pain; GH – general health. SF-36 health dimensions in which mothers of speech-impaired children scored significantly worse (p < 0.05) than control mothers are marked by thick lines.
10 0
PF
RP
RE
SF
MH
EV
BP
GH
Fig. 3. Comparison between mothers of children with hearing impairment (left bar) and the control mothers (right bar). For legend see Fig. 1. SF-36 health dimensions in which mothers of hearing-impaired children scored significantly worse (p < 0.05) than control mothers are marked by thick lines.
I. Aras et al. / International Journal of Pediatric Otorhinolaryngology 78 (2014) 323–329
100 90 80 70 60 50 40 30 20 10 0
PF
RP
RE
SF
MH
EV
BP
GH
Fig. 4. Comparison between fathers of children with hearing impairment (left bar) and the control fathers (right bar). For legend see Fig. 1. SF-36 health dimensions in which fathers of hearing-impaired children scored significantly worse (p < 0.05) than control fathers are marked by thick lines.
prominent if their child has language or hearing problems. From the medical perspective it would be difficult to estimate which of the disorders studied herein creates more obstacles for the child’s future development, communication and acceptance in their social environment, which are some of the parent’s greatest concerns. However according to our results, the mothers of hearing-impaired children are the most vulnerable group. The extent of the difference between them and the fathers of hearing-impaired children (significant in six health dimensions) is also greater than the difference between mothers and fathers of speech-impaired children (significant in four dimensions). In contrast, the fathers of hearing-impaired children scored better than the fathers of speech impaired children, but mainly in the subscales that describe physical health. We hypothesize that the more difficult the perceived problem, the greater the differences between the male and female populations. In preschool-aged children, the hearing impairment is usually perceived as being more difficult, including the use of a hearing aid or cochlear implant, which could be experienced as a kind of a stigma. Many previous studies have shown that parents’ reaction, emotional states and behaviors toward a disabled child are different for mothers and fathers and vary according to the child’s problems. Among the parents of children with disabilities, parents of children with autism and mental deficiency have been more extensively studied so far. Half of mothers of autistic children and 45% of mothers of children with intellectual disabilities have elevated depression scores, whereas the fathers of the same children showed normal depression scores [49]. Mothers of disabled children have more negative emotional states and lack positive feelings. When assessing the time spent with the child, the mothers reported longer involvement with the children than the fathers for both disabled and healthy children [50,51]. Furthermore, the mothers’ greater involvement seems to be related to care taking (meals, bathing, toileting, bedtime routine), not educating or playing, which are more satisfying activities. Taking care of the health of parents with children who have speech and hearing disturbances is important not only for the parents but also for their children and their speech communication development. The mother’s emotional state is of particular importance, especially for young children. Infants’ receptive language development and emotional development is influenced by the mother’s depressive symptoms [52,53]. Furthermore, prenatal depressed maternal mood, particularly serotonin reuptake inhibitors exposure, alters neural plasticity and shifts sensitive periods during perceptual development, thus changing developmental milestones on certain infant speech perception
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tasks during the first year of life [54]. Similar changes occur in hearing impaired children. Maternal stress is associated with fewer words produced at 18–24 months and increased scores for behavior problems [55,56]. Of course, a specific health disorder cannot be identified by the SF-36 questionnaire, but this survey still provides a global assessment of physical and mental wellbeing, identifies weak domains, and highlights certain protective aspects. In our study, the subjective health of the mothers of speechimpaired children was in general worse than the subjective health of their spouses and female controls. The only previous study focused on this topic that used the same instrument (SF-36) was performed in Germany [7], but only included mothers. For the fathers of speech-impaired children, no data about quality of life has yet been published. The subjective health of the mothers of speech-impaired children in our study was affected in fewer domains. Unlike the mothers in the German study, our mothers did not differ significantly from the control mothers on role emotional (RE) and mental health (MH), two dimensions that measure psychological health. When observing a third dimension that measures psychological health – social functioning (SF), they did not score significantly worse than the fathers of speech-impaired children, (although they did score worse than the controls). These data indicate that their psychological health was not as negatively affected as expected, leading us to conclude that certain protective factors were present. One potential factor could be the kind of treatment that their children received. All speech-impaired children in our study were included in a medically supervised group therapy in a kindergarten-like setting in the Polyclinic for Rehabilitation of Listening and Speech (SUVAG) using verbotonal method [57–62]. The groups of children were formed based on each child’s diagnosis (in this case, receptive-expressive language disorder, DSM F80.2). This therapy is intensive and conducted by speech and hearing pathologists on a daily basis for several hours per day. Parents and children have easy access to medical and other experts, and they can socialize with other parents who have similar problems. Regardless of the patient’s socioeconomic status, this treatment is supported by the community and health insurance system, so there is no need for extra ‘‘out of pocket’’ expenses. Thus, most of the mothers expressed great satisfaction with the treatment of their child in this institution, indicating that they feel like they have adequate support and that their children are being cared for. This support is important because higher levels of perceived social support corresponded with lower stress among parents [63]. Mothers of hearing-impaired children generally had the lowest score of all the groups investigated in our study, indicating significantly affected quality of life in the physical, emotional and social aspects. The difference between the mothers and fathers of the same children is also greater than in the other groups. There could be several reasons for this discrepancy: some of the children were still in the process of individual habilitation and hearing aid or cochlear implant fitting. This early post-diagnosis or postoperative phase is a highly stressful period for parents of hearingimpaired children [38]. After this phase (which can last for several years because of the young age of the children and the specific needs of those procedures), some of the children, especially those with good hearing and speech development, managed to join regular kindergarten; thus, we lost some of our star patients and their parents during the study. Children with somewhat slower hearing and speech development or those who were diagnosed and operated later usually join the therapy in our kindergarten eventually under the same conditions as speech-impaired children, but in different groups. This study describes the HRQOL or subjective health of parents of preschool-aged children with speech and hearing difficulties.
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However, parenting situation could differ during the school period, when some of hearing-impaired children, especially those who are successful cochlear implant users have already acquired language skills that enable them to easily follow mainstream schools. In contrast, children with developmental speech difficulties often continue to have problems with understanding speech and reading and writing skills. In a study investigating school-aged children four years after a pre-school diagnosis of developmental or language developmental delay, the authors found poor psychosocial health as a common comorbidity. Almost half of their parents showed clinically significant levels of parenting stress [64].
6. Conclusion The data obtained in this study allow us to conclude that the parents of pre-school-aged speech-and hearing-impaired children experience poorer HRQOL than the parents of healthy children of the same age. Mothers had poorer results than fathers in all groups, but the mothers of severely hearing-impaired children are especially affected, demonstrating a negative impact in almost all health domains. Knowing that the parents’, especially the mother’s, well-being is an important cofactor for the child development, these results can help inform health policies that would understand parents’ problems, the importance of protective factors and the interventions needed to prevent the obvious distress in parents from reaching critical levels that would negatively affect their child’s development. In the future, further studies should be performed to evaluate the timeline of the influence of a child’s language or hearing impairment on the parent’s HRQOL throughout the school period.
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