Introduction
Based on previous nationwide studies, the prevalence of hearing loss among newborns is significant compared with other disabilities, accounting for 1–3 in every 1,000 newborns [1–5]. According to Mazlan et al. [3], from 2010 to 2019, the prevalence of hearing loss among newborns in Malaysia was comparable to that in the United States [5] and Singapore [2]. Data indicated that the median age of deafness diagnosis for children with deaf and hard of hearing (DHH) was approximately 3.8 months. However, compared to the recommendations of the Joint Committee of Infant Hearing Position Statement, the relatively late age at which children are fitted with hearing aids or undergo cochlear implant (CI) surgery following a hearing loss diagnosis is concerning [6]. Previous studies conducted in Malaysia [7, 8] reported that the average age of children fitted with hearing aids was approximately 27.5 months, whereas those who underwent CI surgery were between 39.8 and 41.5 months. The disparity between the age of deafness diagnosed and the age of hearing devices fitted raises questions about whether the postdiagnosis experiences of children and their families render such a significant difference. Therefore, despite universal neonatal hearing screening, the lack of awareness regarding the impact of hearing loss on children and the benefits of intervention for families and children’s development has led to a low level of parental engagement and intention to enroll in interventions as early as possible. Consequently, while promoting timely access to early intervention services for children, considering how to assist parents internally and externally to reduce the age difference between diagnosis and intervention is necessary.
Approximately 90% of DHH children are born to hearing parents [5, 9]. Parents’ understanding regarding hearing loss and hearing devices is frequently lacking, as most of them were raised in a hearing community. A study by Wong et al. [10] indicated that mothers or expectant mothers in Malaysia have insufficient knowledge regarding childhood hearing loss. As hearing loss is an invisible disability, parents will fear and ultimately refuse to take any interventional or medical action for their children as it will label their children as individuals with a hearing disability and exclude them from the hearing community [11–14]. Consequently, the parents may hold a false belief that their children will eventually regain their ability to hear, which in turn delays the fitting of hearing devices (both hearing aids and CI) for their children [12, 15–18].
Furthermore, these parental practices may be because of a stigmatized perception and insufficient awareness of hearing. When healthcare professionals inform parents of their child’s deafness, the parents may experience shame and guilt [12, 15–17]. They may question and reject the diagnosis results once they observe their child responding to sounds at home, which contradicts the diagnosis results [12, 18, 19]. Therefore, parents would dispute the hearing loss diagnosis with the healthcare professionals and believe their child is too young to be examined [20]. Moreover, parents may believe that having a child with DHH is a curse because they may have performed something wrong during pregnancy, and now their children are suffering the consequences [12, 21–23], especially for non-Malay parents in Malaysia [10]. Therefore, parents who are not emotionally ready may experience parental burnout, which in turn delays their child’s intervention process [24]. However, rather than being overwhelmed by negative emotions, some parents are proactive and persistent in finding a solution for their children upon learning of the diagnosis from the healthcare professional [25]. Instead of getting trapped in an emotional hole, they would comprehend what to do for their children; therefore, their children are enrolled in the intervention as early as possible. Further, some parents may initially show negative emotions; however, when their children communicated with them after undergoing interventional sessions, these parents experienced a positive shift and overcame their distress [25]. Therefore, regardless of parents’ personalities and initial reactions, their awareness of the urgency of taking the next step for their children will affect the timing of their access to the intervention.
Furthermore, apart from the inherent factors, such as the parents’ restricted emotional regulation ability and hearing loss awareness, external (resource) factors, such as ecological support systems (ESS), may also play a role in the delayed access to intervention resources experienced by the family. The provision of ESS, whether received from family, friends, support groups, or healthcare professionals, plays a crucial role in assisting parents as they access the intervention process, regardless of the communication modalities or hearing devices they select [26]. For example, caregivers receiving sufficient family and partner support during intervention sessions will influence the caregivers’ reactions and behaviors through those sessions [27–29]. The CI intervention journey requires not only considerable time and effort to attend various medical appointments but also a potential financial burden. Devoid of assistance from partners and family members, the parent’s emotional state may become overwhelming. Moreover, healthcare professionals play a role in not only offering the necessary professional services but also creating a space for parents to express their feelings [30]. This aspect will effectively support and motivate parents to accompany their children throughout the intervention process [29, 31]. Nevertheless, previous studies revealed that inconsistencies in the guidance offered by professionals have been experienced by parents. These inconsistencies have resulted in delays in their attempts to intervene and have hindered the prompt fitting of hearing devices and communication modality program implementation for their DHH children [12, 19, 32]. This situation may be particularly present in children with additional disabilities [33]. A study by Hamzah et al. [12] reported that some parents noted that their child’s development differed from that of other children; therefore, they brought their child to professionals for further examination. However, the parents were advised not to worry because the child was too young and needed to wait and observe how things progressed without undergoing any examination. This finding is consistent with a study that noted that 75.4% of primary care physicians in public health clinics in Malaysia lacked knowledge of hearing issues and did not consider hearing problems to be a significant health issue [34]. Therefore, instances wherein healthcare professionals lack knowledge of childhood hearing loss contribute to the delay in the initiation of the intervention process. Consequently, the emotional state, attitude, and knowledge of parents regarding hearing loss, along with ESS, may significantly affect the timely intervention of a child with DHH.
Considering the abovementioned perspective, the clinical settings, and evidence derived from previous studies conducted in Malaysia, which indicated a discrepancy in age between diagnosis and hearing device fitting [7, 8], several factors that may have been contributing to these discrepancy circumstances require attention. Although previous studies demonstrated the beneficial impact of early intervention on the future development of DHH children [35, 36], considering the parental emotional status (PES) and the available support (ESS) that parents had during the phase preceding the intervention period is important. Parents may have experienced challenging circumstances and encountered emotional allegations from others, which may have caused them to be hesitant to take further action. For instance, some people might criticize the parents, attributing the child’s deafness to a negative action that was done by the mother during pregnancy and considering it as a manifestation of her karma [12, 17]. Furthermore, following CI surgery, parents express concerns regarding the potential benefits their children may derive from the implants. They may experience negative feelings not only in the pre- and postoperative periods but also in the long-term reliability of CI use and intervention sessions [30].
Several studies have shown that early intervention that focuses on spoken language acquisition, particularly before a child reaches 6 months old, leads to better speech and language development [35, 37]. However, initiating early intervention can be challenging when parents are not mentally prepared, particularly if the child is a suitable candidate for a CI, which can be a challenging decision for them [30]. Therefore, considering not only the child’s hearing level and the suitability of hearing devices but also whether the parents are mentally prepared for their child’s intervention is imperative. In this regard, healthcare professionals require the proper instruments or competencies to motivate parents to expedite parental decision making regarding early intervention [30, 38]. Therefore, this study aimed to identify suitable instruments for evaluating the parents’ PES and their ESS and compile the key variables influencing their emotional state and the support they receive with respect to early diagnosis and intervention for DHH children, specifically for parents of children undergoing cochlear implantation.
Materials and methods
This scoping review study was conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines [39–41].
Eligibility criteria
The population, concepts, and context approach were referred to when developing the inclusion criteria to address the research questions [41, 42]. First, for the type of participants (population), although the studies focused on parents of DHH children, in terms of early intervention, the inclusion criteria would be for children falling within the chronological age range of newborn to preschool. Specifically, parents whose children’s chronological ages ranged from 0 to 6 years would be included. Additionally, parents whose children underwent CI surgery before 6 years old, regardless of their current chronological age, would be included. Studies including children with prelingual or late-onset deafness, hearing aid users, CI users, or CI candidates were included. Second, the concept may comprise details pertaining to instruments that evaluate “parental emotional status,” and/or “parental ecological support systems,” and/or “parental quality of life.” Lastly, the context must be English-language-only peer-reviewed publications with no date restrictions, and the articles discussed the PES and/or parental support systems and/or parental quality of life among parents of DHH children using validated instruments.
Types of evidence sources
This study included only peer-reviewed articles that were written in English with no date restrictions. Furthermore, pre-prints, pilot studies, case studies, protocol articles, proceeding articles, literature review articles, systematic reviews, or scoping reviews were not included in this study. Qualitative studies that do not use validated instruments were excluded from the present study. Therefore, only studies that used validated instruments and had parents of DHH children, whose chronological age ranged from 0 to 6 years or had undergone CI surgery between 0 and 6 years old were included. More specifically, articles that relate to parents of preschoolers/toddlers/infants who have hearing loss (either congenital or late-onset hearing loss) were included in this study.
Information sources
To discover articles pertinent to the research question, this study used Medline (via OVID and EMBSCO), Scopus, and Web of Science (WOS). Before entering the article title and abstract screens, articles that discussed adults and/or did not include hearing loss were excluded. The bibliographic databases were searched in March 2023.
Search
Medical subject headings and keywords for the search were covered in the following three key domains:
1. Population: parents of DHH children.
2. Measurement: questionnaire, scale, survey, inventory, or instrument.
3. Concept: quality of life, emotional state of parents, or ESS.
The full electronic search strategy comprised (parent* OR father* OR mother* OR caregiver* OR famil*) AND (children with hearing loss OR children with hearing impairment OR deaf children OR children with deaf or hard of hearing) AND (scale* OR test* OR questionnaire* OR assessment* OR measure* OR inventor* OR instrument*) AND (parent emotion* OR parental emotional readiness OR parental support OR parental support system* OR parental ecological support system* OR parental ecological support OR quality of life). Although the input of Boolean and search terms varies from database to database, it will be adjusted according to the system’s interface and input method; however, the relevant Boolean and keyword searches are clearly linked to the three key domains.
Selection of sources of evidence
The first author performed a literature search for potentially relevant publications measuring PES and ESS among children with hearing loss. Before the first and second authors separately assessed the titles and abstracts of the original articles (proportionate agreement = 0.82), the first author screened and excluded non-hearing loss-related articles after deleting duplicate publications. Extracted studies that used validated instruments for evaluating parental outcomes (either PES or ESS) among DHH children who had their hearing devices at the age of 0–6 years regardless of whether the hearing device was either bilateral hearing aids, bilateral CI, or bimodal were included, and subsequent full-text data extraction finalized the application of the inclusion criteria. During the full-text review phase, the fourth author crosschecked approximately 20% of the articles (proportionate agreement = 0.84). Disagreements over eligibility were addressed by obtaining a third opinion from the third author in both the title and abstract screening and full-text review phases (Fig 1). The review process was performed using the Covidence software during the title and abstract screening and full-text reviews, whereas Microsoft Excel was used during the data extraction phase. Covidence provides the ideal user experience for researchers conducting a systematic/scoping review during the title and abstract screening phase [43].
[Figure omitted. See PDF.]
Data charting
The present database inquiry was conducted between February and March 2023. The first author developed the data-charting table (in Microsoft Excel) for use in the full-text review section and sent it to the second and third authors for additional review and correction while checking the title and abstract. Once the data extraction table’s initial iteration was completed, the second and third authors revised it as necessary.
Data items
To characterize the data from the included articles, a set of variables was defined prior to their extraction for this study. After the second and third authors reviewed the data-charting table, the extracted information was inserted into the table according to the variables listed in the Microsoft Excel sheet. Author(s) and publication year, research design, participant characteristics number of participants, gender of the parents and children, and age-related variables (including child’s age of deafness diagnosis, chronological age, and age at cochlear implantation), child’s device setting, objective(s) of the study, instrument(s) used, and outcomes were listed as variables. This information would summarize existing instruments for evaluating PES and ESS among parents of DHH children.
Synthesis of results
The data and findings from the included studies are integrated and presented in Table 1.
[Figure omitted. See PDF.]
Results
Selection of sources of evidence
Of the 3,060 articles retrieved from the databases (Medline OVID [685] and EMBSCO [1,631], Scopus [59], and WOS [685]), 2,680 were excluded owing to duplication of articles and articles’ subjects, abstracts, and/or title headings. Next, after reviewing 139 full-text articles, 117 articles were excluded for the following reasons: the age of the DHH children, either chronological or age at implantation, was not within 0–6 years, regardless of whether the hearing device was either bilateral hearing aids, bilateral CI, unilateral CI or bimodal (n = 51; 43.59%); did not contain validated instrument (n = 23; 19.66%); not related to the present study’s aims (e.g., outcomes were focused on children rather than parents, and outcomes were not related to PES or ESS; n = 30; 25.64%); the types of research designs did not conform to the study’s inclusion criteria (mentioned in the methodology; n = 7; 5.98%); the articles were not written in English (n = 4; 3.42%); did not provide child’s age-related information (n = 1; 0.85%); and the full-text cannot be accessed (n = 1; 0.85%). Overall, 22 articles met the inclusion criteria (Fig 1).
Characteristics of the sources of evidence
The included articles were published from 2007 to 2022, and approximately half (10 articles) of them were published within five years (since 2019). In addition, most studies had cross-sectional designs (n = 14; 63.63%), whereas case-control study designs (n = 5; 22.73%) and cohort study designs (n = 3; 13.63%) comprised the minority. Of the included studies, four (18.18%) included parents of hearing children as the control group [45, 49, 59, 64]. Furthermore, one study that administered a qualitative instrument was included in the present study because it used a validated instrument and simultaneously interpreted the findings from both qualitative and quantitative approaches, which met the present study’s inclusion criteria [56]. Moreover, nine (40.9%) of the included studies focused on parents of children with at least a CI only, whereas only one study focused on parents of children who are CI candidates only. Moreover, six (27.3%) and two (9.1%) of the included studies comprised parents of children with different types of hearing devices and HA users only, respectively.
Of the parents of DHH children in the included studies, mothers represented approximately 54.4% (n = 947), whereas fathers represented only 25.4% (n = 443). Some studies referred to the responders as parents (n = 347; 19.9%) rather than specifying them as either fathers or mothers; therefore, the number did not count into either mothers or fathers [47, 49, 55, 59]. Moreover, among the study population, a portion of the children who experienced hearing loss were born to mothers (n = 3), fathers (n = 14), or parents (n = 5) with a history of hearing loss [49–51, 53]. Notably, a small percentage of grandparents participated in the study (n = 3; 0.2%), refer to Table 1 for details.
Results of individual sources of evidence
Of the included studies, approximately 22 and 10 evaluated PES and ESS among parents of DHH children, respectively. Among them, different questionnaires were identified and targeted various related concepts (Table 2), including PES (number of instruments = 23) and ESS (number of instruments = 12). Except for the Clarke Modification of the Holroyd Questionnaire on Resources and Stress (Clarke QRS; 0.68), the Parental Involvement on Child Care Index (range 0.67–0.68), and the social relationships domain (0.66) of the World Health Organisation Quality of Life Questionnaire–Short Form (WHOQOL-BREF), the majority of the instruments demonstrated acceptable (> 0.70) to good (> 0.80) internal consistency reliability (Table 2). Moreover, only a few condition-specific instruments were developed and used for evaluating either PES or ESS among parents of children with CI, that is, the Parental Attitudes of Various Aspects of Cochlear Implantation (PAVACI) questionnaire [64] and Parenting Stress-CI modules-early childhood (EC) version [47] for PES, and Children with Cochlear Implants: Parental Perspectives Questionnaire (CCIPP; [65–69]) for both PES and ESS.
[Figure omitted. See PDF.]
Parental emotional status.
Of the 23 instruments that evaluated PES, the Parenting Stress Index (PSI) developed by Abidin et al. [71, 76], in either the full-version (n = 3) or the short-form (n = 3), was the most used instrument (26.08%) for evaluating parental emotional-related indicators among parents of DHH children. The findings derived from the PSI-SF showed no statistically significant differences in parental stress levels experienced by parents of children with CI [56] or CI candidates [44] when their initial and subsequent evaluations were compared. Nevertheless, the findings from the PSI-full version yielded contrasting results, indicating that parents of children with CI exhibited higher stress levels than the normative population of the PSI [62], whereas parents of children with moderate hearing loss have similar stress levels comparable to the norms [49]. Moreover, social support, language, and internalizing behavior were significantly correlated with parental stress levels (PSI-full version; [49, 62]). When examining the domains, the theme of the child’s future [56] and the age of the mother [44] were significantly correlated with the “parent–child dysfunction interaction” domain in the PSI-SF, whereas no significant correlation was noted in the other domains.
Besides PSI, several instruments were used for assessing stress and anxiety levels among parents in the included studies. These instruments included the Beck Anxiety Inventory [64], Parental Stress Scale (PSS; [60]), Depression Anxiety Stress Scale (DASS; [52]), Health-Related Quality of Life–Short Form (HRQOL-SF; [45]), Parenting Stress–CI modules (EC; [48]), Trait Emotional Intelligence Questionnaire–Short Form (TEIQue-SF; [51]), Clarke QRS [57], Family Stress Scale [47], and Zarit Burden Interview [59]. Parents of DHH children showed significantly higher stress, anxiety, and care burden levels than those of hearing children [45, 52, 57, 59, 64]. Parents reported mild-to-severe depression and/or anxiety levels, indicating that they lacked sufficient emotional regulation skills [45, 58, 62–64]. Conversely, parental stress was significantly correlated with parental involvement among DHH children [47, 52, 57], indicating that parents with higher stress levels tend to have lesser involvement in their children’s intervention sessions. Additional comprehensive findings are presented in Table 2.
Ecological support systems.
Of the 12 instruments that evaluated ESS, the Multidimensional Scale of Perceived Social Support (MSPSS; [49, 63]), Family Support Scale (FSS; [46, 57]), and the Perceived Support by Early Intervention scale [50, 53] were commonly used for assessing parental social support (ESS). Parents of DHH children [49, 57] perceived less social support than parents of children with typical hearing. Moreover, without adequate social support, parents exhibited less involvement in intervention sessions and experienced greater depression or stress levels [46, 49, 50, 53, 54, 57, 62, 63].
The findings obtained from the use of the “Beach Center Family Quality of Life Scale” (FQoL) suggested that parents expressed overall pleasure regarding all categories encompassed within the FQoL, except for the emotional well-being domain [54]. Based on the parents’ written comments, they evidently expressed a need for increased assistance in several aspects of family life and the overall well-being of the family. Furthermore, the families indicated a perceived requirement for assistance with respect to overall emotional well-being, stress relief, provision of counseling services, and time allocation for pursuing personal interests. Moreover, parents reported that the FQoL dimensions reflect the small-to-moderate impact of deafness, except for emotional well-being, which has the greatest impact on family life because of deafness [54]. Kobosko et al. [24] compared families of children with low development quotient to those with medium-to-high development quotient and reported no statistically significant differences in the quality of life of families with children who have bilateral severe or profound sensorineural hearing loss.
Furthermore, marital relationship was identified as a significant factor impacting parental involvement in childcare and early intervention sessions [53, 57]. Parents who were more engaged in daily childcare and early intervention sessions reported higher satisfaction levels in their partnerships, particularly among fathers of DHH children [53]. Notwithstanding, acknowledging that although the CCIPP scale was originally designed as a condition-specific measurement of a child with CI’s quality of life outcomes, certain domains within the scale pertain to the emotional well-being of the parents and support that the parents received, such as decision for implantation and process of implantation [59]. Consequently, these domains are included in the ensuing discussion. The analysis of the decision for implantation yielded a low score in terms of the parents’ quality of life, suggesting that they experienced significant stress during the decision-making process. However, the implantation process indicated a moderate quality of life, suggesting that the parents received sufficient assistance throughout the procedure [59]. Additional information is provided in Table 2.
Discussion
Summary of evidence
This scoping review ascertained suitable instruments for evaluating PES and ESS within the clinical context while also consolidating pivotal factors impacting PES and ESS in the context of early intervention for children with DHH children, especially for parents of children undergoing the CI journey. The current shortage of instruments adapted for parents of DHH children is evidenced by the limited number of studies included in this scoping review. Although numerous assessments are accessible to parents of children with CI, acknowledging that these instruments frequently incorporate challenging components that are mainly intended for post-CI only is needed.
Why does evaluating parental emotional status and ecological support systems matter?
Seven (31.8%) of the articles included in the present analyses exclusively recruited individuals of a single gender, who were fathers only (n = 2; [53, 57]) and mothers only (n = 5; [24, 44, 56, 61, 63]). The representative participants’ distribution was unsurprising as mothers were frequently observed to be the child’s caregivers, and the fathers were frequently observed as breadwinners. Fathers showed low involvement with their children, considering that they were mostly invisible in the intervention sessions [29]. A study by Hintermair et al. [53] demonstrated that almost 76% of fathers were rarely involved in their child’s early intervention sessions with 15% of whom were not involved at all. Although studies have shown no significant correlation between fathers’ working hours and frequency of involvement in a child’s intervention [50, 53], most of the fathers mentioned that the main reason for being absent in their child’s intervention was the conflicting time schedule between the early intervention and their working hours [53]. However, fathers are no longer regarded as outsiders but as participants in child rearing, and their presence significantly impacts their child’s development [57, 73].
Hintermair et al. [53] reported that although fathers’ involvement may have been absent during the early intervention session, they remained a visible and integral part of the family-centered intervention framework. One of the key components of early intervention remains to be the engaged participation of family members [25]. Family member involvement plays a key role in family-centered interventions, whether it applies to selecting educational interventions for the child or making decisions regarding hearing interventions. This involvement includes choices such as total communication, sign language, or auditory–verbal interventions for educational interventions, and the selection of hearing aids or CIs for hearing interventions. The decision about CI surgery for children, particularly those who may benefit from it, frequently relies upon a thorough assessment conducted by professionals and adherence to certain implantation criteria. Nevertheless, the final decision about the pursuit of implantation often depends on the parents.
Further, several included studies indicated that PES significantly correlated with parental involvement in intervention sessions among parents of DHH children [28, 47, 52] and positively associated with their marital quality [29, 57]. In other words, parents with emotional stability, including low depression or stress levels, tend to engage more in their child’s intervention sessions, and providing emotional and behavioral support from the spouse would enhance their satisfaction with the marital relationship. A supportive spouse who not only participated in intervention sessions but also offered emotional support would establish an ideal home setting for children, thereby promoting their overall growth and progress. These study results may help researchers identify the indicators that may affect parents’ PES and ESS, which can be used as variables in future research to explore the causal relationship among parental involvement, marital relationship, and PES and ESS.
Emotionally stable parents receiving sufficient ESS during their child’s intervention journey can positively affect their child’s speech and hearing development [62]. However, this intervention journey is not a short-term effort but requires a long-term commitment from the parents. Committing to interventions that require constant involvement may be challenging for parents who do not have adequate ESS and stable PES [102, 103]. In addition, parents juggle multiple roles during the intervention journey, including being the child’s mother/father, teacher, case monitor, speech therapist, and driver, and must attend various interventional-related appointments that may cause exhaustion [103]. Negative emotions such as being overwhelmed, depressed, regretful, or helpless may emerge when a child fails to meet expectations or when the parents are blamed for missed appointments because of work schedules [30, 103]. These negative emotions can make it challenging for healthcare professionals to recommend appropriate interventions. Therefore, parents’ emotional preparedness and the adequacy of their ESS for their children’s intervention journey, particularly the CI journey, must be understood. The following section examines the relevant instruments for PES and ESS assessment in a clinical setting.
Instruments for evaluating parental emotional status and ecological support systems evaluation among the included studies
The present review includes 22 studies, with 23 and 12 validated instruments used for evaluating PES and ESS, respectively, among parents of DHH children. Although several established validating instruments exist for evaluating PES and ESS in parents of DHH children, the available instruments mostly comprise generic measures that have been validated using evidence-based approaches, including the PSI (either short form [76] or full version [89]), WHOQOL-BREF [96], DASS [83], MSPSS [78], and others (Table 2; [26, 72, 73, 75, 80–83, 85–88, 90–95, 97–101]). These instruments can be employed for assessing either PES or ESS. However, generic methods possess the inherent capacity to exhibit reduced sensitivity or yield inconsistent outcomes when employed to assess certain populations or circumstances, particularly in PES [44, 49, 60]. As evidenced by the findings of this scoping review, no discernible disparity in parental stress levels was noted between parents of DHH children and parents of hearing children [49]. However, parents of children with CI experienced higher stress levels than parents of hearing population [59, 62, 64]. Nevertheless, upon closer examination of parental stress levels, the stress indices of these parents (both pre- and post-CI) remained within the fair range [44, 56, 60]. Notably, among the abovementioned studies, only two studies used condition-specific instruments for evaluating parental stress levels [59, 60]. Therefore, the observed disparities that appear substantial lack substantive significance.
Conversely, an interesting finding was observed regarding ESS. Parents of children with moderate hearing loss and CI experienced lower social support levels than parents of hearing children [49, 57]. Meanwhile, the findings indicated that parents who exhibit more emotional stability, characterized by lower depression, anxiety, and stress levels, or who are engaged in their child’s daily activities or intervention sessions, tend to receive greater assistance from their family, friends, or spouse [49, 53, 57, 62, 63]. However, acknowledging that some of the population and item design logic behind the instruments were not originally intended for children with disabilities, for instance, MSPSS [49, 63], which was devised by university undergraduate students [78], is significant. Consequently, critically examining and assessing their psychometric features before their use with the population with disabilities particularly those who are DHH are necessary.
Condition-specific instruments for parents of children with CI
Owing to the irreversible nature of CI surgery, parents must have a positive emotional status and adequate ESS throughout their long-term CI journey (including pre- and post-CI surgery) to not only increase their involvement intention but also to facilitate their child’s spoken language development [30]. For example, although hearing aids did not benefit their children and the children kept removing them because of discomfort, parents still needed to ensure that their children consistently wore the hearing aids to meet the requirements for undergoing CI surgery. Dealing with their children’s uncooperativeness during this process was challenging and caused negative experiences for the parents. If the children have undergone CI surgery, parental involvement will affect the child’s speech and hearing development effectiveness [62, 104, 105]. Thus, parents should exert more effort to cope with mapping sessions and speech therapies, that is, they must attend all the appointments without affecting their daily routine. This can be a challenging task because they have to balance their work schedule, attend therapy sessions, and handle the financial cost of CI devices, which can be emotionally burdensome [106]. Therefore, for healthcare professionals who are working with families of children with CI, the condition-specific instrument design is important to acquire a better understanding of the families’ circumstances. Of note, although the present scoping review identified mostly generic measures among the instruments examined, few instruments were observed to be condition-specific measures, specifically designed for assessing parents of children with CI. Examples of such instruments include the CCIPP [67–70], PAVACI [65], and Parenting Stress-CI modules–EC [48].
The CCIPP scale contains several versions, each indicating slight variation in terms of domains and items [68–70]. The number of domains ranged from 8 to 11, whereas the number of items ranged from 48 to 74. In the study of Peker et al. [59] employed the instrument developed by Incesulu [70], and when compared with Archbold’s version [67, 68], it became apparent that Archbold’s version encompassed a larger quantity of items. In Archbold’s version, additional items were included in several domains to gain insight into the present condition of parents and children with CI, especially the parental-related domains (“decision making” and “process of implantation”), such as the parents’ potential hesitations or concerns regarding decision-making, the expected outcomes for their child following CI surgery, and the support they received from others. Nevertheless, of note, both versions primarily prioritize the assessment of the child’s quality of life rather than that of the parents, and the generalizability of these findings may be limited. For example, based on the findings of the “process of implantation” domain, whether parents expressed concerns regarding their child’s outcome or lacked sufficient support from others following CI surgery is difficult to ascertain. Besides, another limitation of using the CCIPP is that it was designed for parents whose children had CI for at least 3 years. This scale cannot be used to measure parental concerns and support systems among parents of children with CI candidates and newly implantees (within 1 year). Consequently, if healthcare professionals use the CCIPP to measure parental quality of life, its practical limitations and interpretive power may be questioned.
Similarly, to assess parental attitudes toward their children’s CI, the PAVACI instrument was developed [65]. This instrument comprises 70 items distributed across six different domains. A subtle distinction exists between the CCIPP and PAVACI scales in terms of the composition of the samples used during their respective development processes. The development of the PAVACI scale was specifically informed by data collected from a cohort of parents and children 1 year following CI surgery. However, although this scale demonstrates suitability in evaluating the outcomes of parents with newly implanted children (1 year of CI experience), its applicability may be limited when assessing parents whose children have not yet undergone CI surgery. Furthermore, half of the items, specifically 35 items, were related to parents’ support systems, encompassing several aspects, including services provided by the CI center, rehabilitation programs, and decision-making processes. Half of the items remained targeted at the child’s outcomes regarding the child’s communication, academics, social skills, and social abilities. Thus, the PAVICI scale’s content may not be appropriate for evaluating PES in relation to their child’s CI and their ESS during the CI journey. Therefore, in the context of clinical practice, individuals who lack proficiency in counseling, such as audiologists who frequently interact with families, encounter difficulties in understanding the parental emotions and the support they need.
Currently, the Parenting Stress-CI modules–EC (15 items) is considered the most suitable condition-specific instrument for evaluating the emotional status of parents who have children with CI [48]. The Parenting Stress-CI modules–EC demonstrates a greater connection and closeness to the familial circumstances of children with CI than the PSS or PSI scales. Specifically, the scale now includes items addressing concerns related to fear of losing the CI, managing the CI, or dealing with individuals staring at a child’s CI. These items emphasize the stress experienced by parents because of the appearance of the CI and the potential financial and managerial risks it encompasses. The published research demonstrated that the instrument shows favorable reliability and validity levels [48]. Also, the scale underwent a convergent validity test using the PSI-SF, and the findings were satisfactory, that is, the correlation between the two measures approached a significant level (r = .66, p < .001). Despite the inclusion of inquiries regarding potential CI-related risks, including financial costs and CI appearance, and the examination of the impact of family dynamics on parental stress levels, considering that the instrument still has its limitations is essential. Notably, the population recruitment during the instrument’s development phase may present certain limitations, as most participants were Caucasians. Therefore, the generalizability of the Parenting Stress-CI modules–EC to other ethnic groups remains uncertain. Furthermore, the scale employed in the Cejas et al. [48] study lacked different domains. Consequently, the interpretation of parental stress levels solely relied on the overall score, making it difficult to recognize specific stressors for families or parents. Specifically, without a detailed analysis, ascertaining the specific aspects (CI appearance, financial costs, family support, healthcare professionals’ support, and child’s expectation outcomes) that contribute to the experience of stress is challenging. Moreover, as the scale must be accompanied by social support-related instruments to understand the parent’s current emotional status and support systems, healthcare professionals should be aware of the limitations of the scale. Simultaneously, employing additional instruments pertaining to social support to comprehensively comprehend the prevailing emotional condition and support systems of parents of children with CI is imperative.
Limitations
This scoping review skips over gray literature, such as unpublished works or theses, as well as peer-reviewed publications written in languages other than English, such as Mandarin and Malay. Considering the multi-lingual nature of Malaysia, the exclusion of Mandarin and Malay literature may result in a missed opportunity to include valuable information that can be used in academic and clinical contexts within the country. This exclusionary approach may result in the omission of studies relevant to the present study’s objectives. Furthermore, note that this scoping review did not evaluate the quality of the studies included in the analyses. However, all included articles were extracted from bibliographic databases and had undergone the rigorous process of peer review before publication. Lastly, based on the findings of previous studies, the present study identified various factors that could influence PES and ESS. Notably, key indicators such as ethnicity, economic status, area of living, and culture have not been thoroughly examined [107]. This suggests that the results of the included studies do not necessarily apply to Asian cultures or even multicultural Malaysians. Future studies should investigate these significant indicators to better understand how PES and ESS are affected across different populations.
Conclusions
This scoping review summarized studies related to PES and ESS among parents of DHH children, particularly those children undergoing the CI journey, and identified suitable instruments for evaluating PES and their ESS. Previous studies have provided evidence of the positive effects of early intervention on the future developmental outcomes of children diagnosed with hearing loss. However, in the context of family-centered intervention, parents play a significant role in selecting intervention sessions for their children. When parents lack emotional preparedness and have inadequate social support, they may not possess the necessary knowledge to immediately seek assistance, which could delay enrolling their children in early intervention programs. Healthcare professionals must realize that parents of DHH children, particularly those who have undergone CI surgery, necessitate an adequate amount of time to understand and regulate their emotions, as well as reorganize their support systems. However, no condition-specific instruments for evaluating PES and ESS among parents of DHH children are available. Nevertheless, condition-specific instruments for evaluating PES and ESS among parents of children with CI are available; however, their applicability is limited. Therefore, if non-psychological experts (including audiologists and speech-language pathologists) in the CI team have suitable instruments to employ throughout their consultation session, they will not only provide services in monitoring children’s hearing status but also guide parents, as required. To develop a condition-specific instrument that could benefit healthcare professionals in identifying indicators of PES and ESS among parents of children with CI, further study is warranted. The instrument would enable healthcare professionals to offer appropriate assistance to the parents, potentially leading to a timelier intervention.
Supporting information
S1 Checklist. Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.
https://doi.org/10.1371/journal.pone.0305748.s001
(DOCX)
References
1. 1. Centers for Disease Control and Prevention. Annual Data Early Hearing Detection and Intervention (EHDI) Program. [Internet]. 2017 [cited 2023 May 1]. Available from: https://www.cdc.gov/ncbddd/hearingloss/2017-data/01-data-summary.html
2. 2. Rajadurai VS, Yip WY, Lim JSC, Khoo PC, Tan ES, Mahadev A, et al. Evolution and expansion of newborn screening programmes in Singapore. Singapore Med J. 2021;62(1 Suppl): S26–S35.
* View Article
* Google Scholar
3. 3. Mazlan R, Raman K, Abdullah A. A 10-year retrospective analysis of newborn hearing screening in a tertiary hospital in Malaysia. Egypt J Otolaryngol. 2022;38(1):135.
* View Article
* Google Scholar
4. 4. Wong YA, Mazlan R, Abdul Wahab NA, Ja’afar R, Huda Bani N, Abdullah NA. Quality measures of a multicentre universal newborn hearing screening program in Malaysia. J Med Screen. 2021;28(3):238–243. pmid:33202173
* View Article
* PubMed/NCBI
* Google Scholar
5. 5. National Institute on Deafness and Other Communication Disorders. Quick statistics about hearing [Internet]. 2021 [cited 2023 May 3]. Available from: https://www.nidcd.nih.gov/health/statistics/quick-statistics-hearing#2
6. 6. Joint Committee on Infant Hearing. Year 2019 Position Statement: Principles and guidelines for early hearing detection and intervention programs. J Early Hear Detect Interv. 2019;4(2):1–44.
* View Article
* Google Scholar
7. 7. Goh BS, Fadzilah N, Abdullah A, Othman BF, Umat C. Long-term outcomes of universiti Kebangsaan Malaysia cochlear implant program among pediatric implantees. Int J Pediatr Otorhinolaryngol. 2018;105:27–32. pmid:29447813
* View Article
* PubMed/NCBI
* Google Scholar
8. 8. Yusoff YM, Umat C, Mukari S. Profiling the national cochlear implant recipients for prelingual, hearing-impaired children in Malaysia. J Sains Kesihat Malays. 2017;15(2):153–162.
* View Article
* Google Scholar
9. 9. Mitchell RE, Karchmer M. Chasing the mythical ten percent: Parental hearing status of deaf and hard of hearing students in the United States. Sign Lang Stud. 2004;4(2):138–163.
* View Article
* Google Scholar
10. 10. Wong YA, Mukari SZMS, Harithasan D, Mazlan R. Knowledge and attitude on childhood hearing loss among mothers and mothers-to-be in urban and rural areas in Malaysia. Int J Pediatr Otorhinolaryngol. 2019;124:79–84. pmid:31174022
* View Article
* PubMed/NCBI
* Google Scholar
11. 11. Ahlert IA, Greeff AP. Resilience factors associated with adaptation in families with deaf and hard of hearing children. Am Ann Deaf. 2012;157(4):391–404. pmid:23259356
* View Article
* PubMed/NCBI
* Google Scholar
12. 12. Hamzah NFA, Umat C, Harithasan D, Goh BS. Challenges faced by parents when seeking diagnosis for children with sensorineural hearing loss. Int J Pediatr Otorhinolaryngol. 2021;143:110656. pmid:33662710
* View Article
* PubMed/NCBI
* Google Scholar
13. 13. Hyde M, Punch R, Komesaroff L. Coming to a decision about cochlear implantation: Parents making choices for their deaf children. J Deaf Stud Deaf Educ. 2010;15(2):162–178. pmid:20139157
* View Article
* PubMed/NCBI
* Google Scholar
14. 14. Thakre SB, Thakre SS, Alone S. Qualitative analysis of parents’ experience of hearing loss of their school going children of a rural area of Nagpur. J Res Med Sci Off J Isfahan Univ Med Sci. 2012;17(8):764–771. pmid:23798944
* View Article
* PubMed/NCBI
* Google Scholar
15. 15. Chang PF. Breaking the sound barrier: exploring parents’ decision-making process of cochlear implants for their children. Patient Educ Couns. 2017;100(8):1544–1551. pmid:28291575
* View Article
* PubMed/NCBI
* Google Scholar
16. 16. Zhao F, Manchaiah V, St. Claire L, Danermark B, Jones L, Brandreth M, et al. Exploring the influence of culture on hearing help-seeking and hearing-aid uptake. Int J Audiol. 2015;54(7):435–443. pmid:25761498
* View Article
* PubMed/NCBI
* Google Scholar
17. 17. Ebrahimi H, Mohammadi E, Mohammadi MA, Pirzadeh A, Mahmoudi H, Ansari I. Stigma in mothers of deaf children. Iran J Otorhinolaryngol. 2015;27(79):109–118.
* View Article
* Google Scholar
18. 18. Schmulian D, Lind C. Parental experiences of the diagnosis of permanent childhood hearing loss: A phenomenological study. Int J Audiol. 2020;59(1):54–60. pmid:31566461
* View Article
* PubMed/NCBI
* Google Scholar
19. 19. Fulcher AN, Purcell A, Baker E, Munro N. Factors influencing speech and language outcomes of children with early identified severe/profound hearing loss: Clinician-identified facilitators and barriers. Int J Speech Lang Pathol. 2015;17(3):325–333. pmid:25958792
* View Article
* PubMed/NCBI
* Google Scholar
20. 20. Majid AHA, Zakaria MN, Abdullah NAC, Hamzah S, Mukari SZMS. Determinants of caregivers’ awareness of universal newborn hearing screening in Malaysia. Int J Pediatr Otorhinolaryngol. 2017;101:107–111. pmid:28964278
* View Article
* PubMed/NCBI
* Google Scholar
21. 21. Grandpierre V, Fitzpatrick EM, Na E, Mendonca O. School-aged children with mild bilateral and unilateral hearing loss: Parents’ reflections on services, experiences, and outcomes. J Deaf Stud Deaf Educ. 2018;23(2):140–147. pmid:29096023
* View Article
* PubMed/NCBI
* Google Scholar
22. 22. Jean YQ, Mazlan R, Ahmad M, Maamor N. Parenting stress and maternal coherence: Mothers with deaf or hard-of-hearing children. Am J Audiol. 2018;27(3):260–271. pmid:30007031
* View Article
* PubMed/NCBI
* Google Scholar
23. 23. Swanepoel D, Almec N. Maternal views on infant hearing loss and early intervention in a South African community. Int J Audiol. 2008;47(sup1):S44–S48.
* View Article
* Google Scholar
24. 24. Kobosko J, Sekułowicz M, Śliwa L, Rostkowska J, Jedrzejczak WW, Skarzynski H. Psychological correlates of parental burnout in hearing mothers of deaf children: personality, satisfaction with life, and posttraumatic growth. Int J Spec Educ. 2021;36(1):89–98.
* View Article
* Google Scholar
25. 25. Barker BA, Scharp KM, Chandler KL, Bowman EB. Exploring the types of stories hearing parents tell about rearing their children who use cochlear implants. Ear Hear. 2021;42(5):1284–1294. pmid:33859119
* View Article
* PubMed/NCBI
* Google Scholar
26. 26. Ingber S, Dromi E. Actual versus desired family-centered practice in early intervention for children with hearing loss. J Deaf Stud Deaf Educ. 2010;15(1):59–71. pmid:19762352
* View Article
* PubMed/NCBI
* Google Scholar
27. 27. Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol. 2010;74(3):265–70. pmid:20042242
* View Article
* PubMed/NCBI
* Google Scholar
28. 28. Jackson CW, Traub RJ. Parents’ experiences with childhood deafness: Implications for family-centered services. Commun Disord Q. 2008;29(2):82–98.
* View Article
* Google Scholar
29. 29. Vieira S de S, Dupas G, Chiari BM. Cochlear implant: the family’s perspective. Cochlear Implants Int. 2018;19(4):216–224. pmid:29363411
* View Article
* PubMed/NCBI
* Google Scholar
30. 30. Duncan J. Parental readiness for cochlear implant decision-making. Cochlear Implants Int. 2009;10(sup1):38–42. pmid:19230035
* View Article
* PubMed/NCBI
* Google Scholar
31. 31. van der Spuy T, Pottas L. Infant hearing loss in South Africa: Age of intervention and parental needs for support. Int J Audiol. 2008;47(sup1):S30–S35. pmid:18781511
* View Article
* PubMed/NCBI
* Google Scholar
32. 32. Eleweke CJ, Rodda M. Factors contributing to parents’ selection of a communication mode to use with their deaf children. Am Ann Deaf. 2000;375–383. pmid:11037069
* View Article
* PubMed/NCBI
* Google Scholar
33. 33. McCracken W, Turner O. Deaf children with complex needs: Parental experience of access to cochlear implants and ongoing support. Deaf Educ Int. 2012;14(1):22–35.
* View Article
* Google Scholar
34. 34. Mazlan R, Othman S. Knowledge and attitudes of primary care physicians regarding childhood hearing loss in Malaysia. PLoS ONE. 2023;18(12):e0295972. pmid:38127879
* View Article
* PubMed/NCBI
* Google Scholar
35. 35. Yoshinaga-Itano C, Sedey AL, Wiggin M, Chung W. Early hearing detection and vocabulary of children with hearing loss. Pediatrics. 2017;140(2):e20162964. pmid:28689189
* View Article
* PubMed/NCBI
* Google Scholar
36. 36. Yoshinaga-Itano C, Sedey AL, Mason CA, Wiggin M, Chung W. Early intervention, parent talk, and pragmatic language in children with hearing loss. Pediatrics. 2020;146(Supplement_3):S270–S277. pmid:33139440
* View Article
* PubMed/NCBI
* Google Scholar
37. 37. Yoshinaga-Itano C, Sedey AL, Coulter DK, Mehl AL. Language of early-and later-identified children with hearing loss. Pediatrics. 1998;102(5):1161–71. pmid:9794949
* View Article
* PubMed/NCBI
* Google Scholar
38. 38. Na E, Toupin-April K, Olds J, Noll D, Fitzpatrick EM. Cochlear implant decision-making for children with residual hearing: Perspectives of parents. Cochlear Implants Int. 2023;1–10.
* View Article
* Google Scholar
39. 39. Peters MD, Marnie C, Tricco AC, Pollock D, Munn Z, Alexander L, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth. 2020;18(10):2119–26. pmid:33038124
* View Article
* PubMed/NCBI
* Google Scholar
40. 40. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169(7):467–473. pmid:30178033
* View Article
* PubMed/NCBI
* Google Scholar
41. 41. Westphaln KK, Regoeczi W, Masotya M, Vazquez-Westphaln B, Lounsbury K, McDavid L, et al. From Arksey and O’Malley and Beyond: Customizations to enhance a team-based, mixed approach to scoping review methodology. MethodsX. 2021;8:101375. pmid:34430271
* View Article
* PubMed/NCBI
* Google Scholar
42. 42. Peters MD, Godfrey C, McInerney P, Khalil H, Larsen P, Marnie C, et al. Best practice guidance and reporting items for the development of scoping review protocols. JBI Evid Synth. 2022;20(4):953–968. pmid:35102103
* View Article
* PubMed/NCBI
* Google Scholar
43. 43. Harrison H, Griffin SJ, Kuhn I, Usher-Smith JA. Software tools to support title and abstract screening for systematic reviews in healthcare: an evaluation. BMC Med Res Methodol. 2020;20:1–12. pmid:31931747
* View Article
* PubMed/NCBI
* Google Scholar
44. 44. Aiello C, Ferrari D. Teleaudiology: efficacy assessment of an online social network as a support tool for parents of children candidates for cochlear implant. CODAS. 2015;27(5):411–418. pmid:26648210
* View Article
* PubMed/NCBI
* Google Scholar
45. 45. Aras I, Stevanovic R, Vlahovic S, Stevanovic S, Kolaric B, Kondic L. Health related quality of life in parents of children with speech and hearing impairment. Int J Pediatr Otorhinolaryngol. 2014;78(2):323–329. pmid:24388315
* View Article
* PubMed/NCBI
* Google Scholar
46. 46. Brand D, Zaidman-Zait A, Most T. Parent couples’ coping resources and involvement in their children’s intervention program. J Deaf Stud Deaf Educ. 2018;23(3):189–199. pmid:29672722
* View Article
* PubMed/NCBI
* Google Scholar
47. 47. Cejas I, Mitchell C, Barker D, Sarangoulis C, Eisenberg L, Quittner A. Parenting stress, self-efficacy, and involvement: Effects on spoken language ability three years after cochlear implantation. Otol Neurotol. 2021;42(10S):S11–S18. pmid:34766939
* View Article
* PubMed/NCBI
* Google Scholar
48. 48. Cejas I, Coto J, Sarangoulis C, Hoffman M, Quittner A. Development and validation of a parenting stress module for parents of children using cochlear implants. J Pediatr Psychol. 2022;47(7):785–794. pmid:35303073
* View Article
* PubMed/NCBI
* Google Scholar
49. 49. Dirks E, Uilenburg N, Rieffe C. Parental stress among parents of toddlers with moderate hearing loss. Res Dev Disabil. 2016;55:27–36. pmid:27031795
* View Article
* PubMed/NCBI
* Google Scholar
50. 50. Dirks E, Szarkowski A. Family-Centered Early Intervention (FCEI) involving fathers and mothers of children who are deaf or hard of hearing: Parental involvement and self-efficacy. J Clin Med. 2022;11(3):492. pmid:35159944
* View Article
* PubMed/NCBI
* Google Scholar
51. 51. Gascon-Ramos M, Campbell M, Bamford J, Young A. Influences on parental evaluation of the content of early intervention following early identification of deafness: A study about parents’ preferences and satisfaction. Child Care Health Dev. 2010;36(6):868–877. pmid:20666784
* View Article
* PubMed/NCBI
* Google Scholar
52. 52. Green V. Parental reaction to diagnosis of infant hearing loss. Adv Ment Health. 2020;18(1):62–72.
* View Article
* Google Scholar
53. 53. Hintermair M, Sarimski K. Fathers of deaf and hard-of-hearing infants and toddlers—experiences, needs, and challenges. J Deaf Stud Deaf Educ. 2019;24(2):84–94. pmid:30597031
* View Article
* PubMed/NCBI
* Google Scholar
54. 54. Jackson CW, Wegner JR, Turnbull AP. Family quality of life following early identification of deafness. Lang Speech Hear Serv Sch. 2010;41(2):194–205. pmid:19755640
* View Article
* PubMed/NCBI
* Google Scholar
55. 55. Kushalnagar P, Krull K, Hannay J, Mehta P, Caudle S, Oghalai J. Intelligence, parental depression, and behavior adaptability in deaf children being considered for cochlear implantation. J Deaf Stud Deaf Educ. 2007;12(3):335–49. pmid:17449899
* View Article
* PubMed/NCBI
* Google Scholar
56. 56. Majorano M, Guerzoni L, Cuda D, Morelli M. Mothers’ emotional experiences related to their child’s diagnosis of deafness and cochlear implant surgery: Parenting stress and child’s language development. Int J Pediatr Otorhinolaryngol. 2020;130:109812. pmid:31841781
* View Article
* PubMed/NCBI
* Google Scholar
57. 57. Mavrogianni T, Lampropoulou V. The involvement of fathers with their deaf children. Int J Disabil Dev Educ. 2020;67(1):45–57.
* View Article
* Google Scholar
58. 58. Munoz K, Olson W, Twohig M, Preston E, Blaiser K, White K. Pediatric hearing aid use: Parent-reported challenges. Ear Hear. 2015;36(2):279–287. pmid:25303862
* View Article
* PubMed/NCBI
* Google Scholar
59. 59. Peker S, Korkmaz F, Cukurova I. Quality of life and parental care burden in cochlear implanted children: A case-control study. Int J Pediatr Otorhinolaryngol. 2020;136:110164. pmid:32570061
* View Article
* PubMed/NCBI
* Google Scholar
60. 60. Piplani S, Kalaiah MK, Shastri U. Relationship between parental stress and attitude towards cochlear implantation outcomes in children in an Indian context. CoDAS. 2022;34(5):e20210125. pmid:35352791
* View Article
* PubMed/NCBI
* Google Scholar
61. 61. Saki N, Yadollahpour A, Moniri S, Karimi M, Bayat A, Abshirini H, et al. Investigating the impacts of cochlear implantation on the happiness and self-esteem of mothers of children with severe hearing loss. Int J Ment Health Addict. 2017;15(2):288–294.
* View Article
* Google Scholar
62. 62. Sarant J, Garrard P. Parenting stress in parents of children with cochlear implants: Relationships among parent stress, child language, and unilateral versus bilateral implants. J Deaf Stud Deaf Educ. 2014;19(1):85–106. pmid:23813672
* View Article
* PubMed/NCBI
* Google Scholar
63. 63. Sipal R, Sayin U. Impact of perceived social support and depression on the parental attitudes of mothers of children who are deaf. J CHILD Fam Stud. 2013;22(8):1103–1111.
* View Article
* Google Scholar
64. 64. Talebi H, Habibi Z, Abtahi H, Ladani N. Parental anxiety in cochlear implanted children’s family. Hear Balance Commun. 2018;16(1):17–20.
* View Article
* Google Scholar
65. 65. Soleimanifar S, Jafari Z, Zarandy MM. Validity and reliability of “parental attitudes of various aspects of cochlear implantation” questionnaire. Iran J Otorhinolaryngol. 2015;27(83):449–457. pmid:26788490
* View Article
* PubMed/NCBI
* Google Scholar
66. 66. Archbold SM, Lutman ME, Gregory S, O’Neill C, Nikolopoulos TP. Parents and their deaf child: Their perceptions three years after cochlear implantation. Deaf Educ Int. 2002;4(1):12–40.
* View Article
* Google Scholar
67. 67. Archbold S, Sach T, O/Neill C, Lutman M, Gregory S. Deciding to have a cochlear implant and subsequent after-care: Parental perspectives. Deaf Educ Int. 2006;8(4):190–206.
* View Article
* Google Scholar
68. 68. Archbold S, Sach T, O’Neill C, Lutman M, Gregory S. Outcomes from cochlear implantation for child and family: Parental perspectives. Deaf Educ Int. 2008;10(3):120–142.
* View Article
* Google Scholar
69. 69. O’Neill C, Lutman M, Archbold S, Gregory S, Nikolopoulos T. Parents and their cochlear implanted child: questionnaire development to assess parental views and experiences. Int J Pediatr Otorhinolaryngol. 2004;68(2):149–160. pmid:14725981
* View Article
* PubMed/NCBI
* Google Scholar
70. 70. Incesulu A, Vural M, Erkam U. Children with cochlear implants: Parental perspective. Otol Neurotol. 2003;24(4):605–611. pmid:12851553
* View Article
* PubMed/NCBI
* Google Scholar
71. 71. Abidin RR, Santos S. V. PSI–Índice de Stress Parental. Lisb CEGOC. 2003;
* View Article
* Google Scholar
72. 72. Maslić Seršić D, Vuletić G. Psychometric evaluation and establishing norms of Croatian SF-36 health survey: Framework for subjective health research. Croat Med J. 2006;47(1):95–102. pmid:16489702
* View Article
* PubMed/NCBI
* Google Scholar
73. 73. Zaidman-Zait A, Most T, Tarrasch R, Haddad E. Mothers’ and fathers’ involvement in intervention programs for deaf and hard of hearing children. Disabil Rehabil. 2018;40(11):1301–1309. pmid:28286960
* View Article
* PubMed/NCBI
* Google Scholar
74. 74. Ingber S. The philosophy and practice of parental involvement in early intervention for children with hearing impairment in Israel. Unpubl Dr Diss Tel Aviv Univ Isr. 2004;
* View Article
* Google Scholar
75. 75. Dunst CJ, Jenkins V, Trivette C. The family support scale: Reliability and validity. J Individ Fam Community Wellness. 1984;1(4):45–52.
* View Article
* Google Scholar
76. 76. Abidin RR. Parenting stress index-short form. Vol. 118. Pediatric psychology press Charlottesville, VA; 1990.
77. 77. De Brock A, Verhulst A, Gerris J, Abidin R. NOSI-Nijmegen parenting stress index, manual experimental version. 1992;
* View Article
* Google Scholar
78. 78. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess. 1988;52(1):30–41.
* View Article
* Google Scholar
79. 79. Ly A, Goldberg W. New measure for fathers of children with developmental challenges. J Intellect Disabil Res. 2014;58(5):471–484. pmid:23627678
* View Article
* PubMed/NCBI
* Google Scholar
80. 80. Petrides KV, Furnham A. The role of trait emotional intelligence in a gender‐specific model of organizational variables. J Appl Soc Psychol. 2006;36(2):552–569.
* View Article
* Google Scholar
81. 81. Cooper A, Petrides KV. A psychometric analysis of the Trait Emotional Intelligence Questionnaire–Short Form (TEIQue–SF) using item response theory. J Pers Assess. 2010;92(5):449–457. pmid:20706931
* View Article
* PubMed/NCBI
* Google Scholar
82. 82. Young A, Gascon-Ramos M, Campbell M, Bamford J. The design and validation of a parent-report questionnaire for assessing the characteristics and quality of early intervention over time. J Deaf Stud Deaf Educ. 2009;14(4):422–435. pmid:19617378
* View Article
* PubMed/NCBI
* Google Scholar
83. 83. Lovibond SH, Lovibond PF. Manual for the depression anxiety stress scales. Syd Psychol Found. 1995;
* View Article
* Google Scholar
84. 84. Senkpiel A, Sarimski K. Väter von Kindern mit Down-Syndrom in der Frühförderung [Fathers of children with Down’s syndrome in early intervention]. Leben Mit -Syndr. 2016;81:12–16.
* View Article
* Google Scholar
85. 85. Zimmermann T, Lause M, Heinrichs N. Fragebogen zur partnerschaftsqualität: quality of marriage index-deutsche version (QMI-D). Verhaltenstherapie. 2015;25(1):51–53.
* View Article
* Google Scholar
86. 86. Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: A qualitative inquiry. Ment Retard. 2003;41(5):313–328. pmid:12962536
* View Article
* PubMed/NCBI
* Google Scholar
87. 87. MacPhee D, Benson JB, Bullock D. Influences on maternal self-perceptions. Infant Behav Dev. 1986;9(236):236.
* View Article
* Google Scholar
88. 88. Brown I, Brown R, Baum N, Isaacs B, Myerscough T, Neikrug S, et al. Family Quality of Life Survey: Main caregivers of people with intellectual or developmental disabilities. 2006. Tor Can Surrey Place Cent. 2006;
* View Article
* Google Scholar
89. 89. Abidin RR. Parenting Stress Index: Manual, Administration Booklet,[and] Research Update. 1983;
* View Article
* Google Scholar
90. 90. Konstantareas MM, Homatidis S, Plowright C. Assessing resources and stress in parents of severely dysfunctional children through the Clarke modification of Holroyd’s Questionnaire on Resources and Stress. J Autism Dev Disord. 1992;22(2):217–234. pmid:1624406
* View Article
* PubMed/NCBI
* Google Scholar
91. 91. Schumm WR, Paff-Bergen LA, Hatch RC, Obiorah FC, Copeland JM, Meens LD, et al. Concurrent and discriminant validity of the Kansas Marital Satisfaction Scale. J Marriage Fam. 1986;48(2):381–387.
* View Article
* Google Scholar
92. 92. Radin N. Primary caregiving and role-sharing fathers. Nontradit Fam Parent Child Dev Michael E Lamb. 1982;
* View Article
* Google Scholar
93. 93. Bond FW, Hayes SC, Baer RA, Carpenter KM, Guenole N, Orcutt HK, et al. Preliminary psychometric properties of the Acceptance and Action Questionnaire–II: A revised measure of psychological inflexibility and experiential avoidance. Behav Ther. 2011;42(4):676–688. pmid:22035996
* View Article
* PubMed/NCBI
* Google Scholar
94. 94. Kroenke K, Spitzer RL, Williams JB. The PHQ‐9: Validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613. pmid:11556941
* View Article
* PubMed/NCBI
* Google Scholar
95. 95. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist. 1980;20(6):649–655. pmid:7203086
* View Article
* PubMed/NCBI
* Google Scholar
96. 96. Whoqol Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28(3):551–558.
* View Article
* Google Scholar
97. 97. Berry JO, Jones WH. The parental stress scale: Initial psychometric evidence. J Soc Pers Relatsh. 1995;12(3):463–472.
* View Article
* Google Scholar
98. 98. Rosenberg M. Rosenberg self-esteem scale. J Relig Health. 1965;
* View Article
* Google Scholar
99. 99. Lu L, Argyle M. Receiving and giving support: Effects on relationships and well-being. Couns Psychol Q. 1992;5(2):123–133.
* View Article
* Google Scholar
100. 100. Hisli N. Beck depresyon envanterinin universite ogrencileri icin gecerliligi, guvenilirligi.(A reliability and validity study of Beck Depression Inventory in a university student sample). J Psychol. 1989;7:3–13.
* View Article
* Google Scholar
101. 101. Kaviani H, Mousavi AS. Psychometric properties of the Persian version of Beck Anxiety Inventory (BAI). Tehran University Medical Journal.; 2008.
* View Article
* Google Scholar
102. 102. Silva J, Yamada M, Guedes E, Moret A. Factors influencing the quality of life of children with cochlear implants. Braz J Otorhinolaryngol. 2020;86(4):411–418. pmid:30898483
* View Article
* PubMed/NCBI
* Google Scholar
103. 103. Zaidman-Zait A, Curle D. Complexity: An interpretative phenomenological analysis of the experiences of mothers of deaf children with cochlear implants and autism. J Health Psychol. 2018;23(9):1173–1184. pmid:27185249
* View Article
* PubMed/NCBI
* Google Scholar
104. 104. DesJardin JL, Eisenberg LS. Maternal contributions: Supporting language development in young children with cochlear implants. Ear Hear. 2007;28(4):456–469. pmid:17609609
* View Article
* PubMed/NCBI
* Google Scholar
105. 105. Boons T, Brokx JP, Dhooge I, Frijns JH, Peeraer L, Vermeulen A, et al. Predictors of spoken language development following pediatric cochlear implantation. Ear Hear. 2012;33(5):617–639. pmid:22555184
* View Article
* PubMed/NCBI
* Google Scholar
106. 106. Misron K, Tengku Kamalden TMI, Misron LH, Devesahayam PR, Misron SNF. Long-term maintenance costs incurred by the families of pediatric cochlear implant recipients in Malaysia. Cochlear Implants Int. 2021;22(5):291–295. pmid:33794747
* View Article
* PubMed/NCBI
* Google Scholar
107. 107. Goldblat E, Rivkin D, Konstantinov V. Associations between ethnicity, place of residence, hearing status of family and habilitation of children with hearing impairment. Isr J Health Policy Res. 2020;9:1–11. pmid:32660547
* View Article
* PubMed/NCBI
* Google Scholar
Citation: Lim TZ, Umat C, Chen P-H, Gan CH, Goh BS (2024) Instruments for evaluating the parental emotional status and ecological support systems among parents who considered cochlear implantation for their children with hearing loss: A scoping review. PLoS ONE 19(7): e0305748. https://doi.org/10.1371/journal.pone.0305748
About the Authors:
Tang Zhi Lim
Roles: Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Validation, Visualization, Writing – original draft, Writing – review & editing
Affiliation: Center for Rehabilitation & Special Needs Studies, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
ORICD: https://orcid.org/0009-0003-2069-9015
Cila Umat
Roles: Conceptualization, Data curation, Investigation, Methodology, Project administration, Supervision, Validation, Writing – review & editing
E-mail: [email protected]
Affiliation: Center for Rehabilitation & Special Needs Studies, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
ORICD: https://orcid.org/0000-0002-9619-4756
Pei-Hua Chen
Roles: Formal analysis, Methodology, Supervision, Validation, Writing – review & editing
Affiliation: Speech and Hearing Science Research Institute, Children’s Hearing Foundation, Taipei, Taiwan
ORICD: https://orcid.org/0000-0003-3164-3861
Chun Hong Gan
Roles: Supervision, Validation, Writing – review & editing
Affiliation: Center for Rehabilitation & Special Needs Studies, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
Bee See Goh
Roles: Supervision, Writing – review & editing
Affiliations: Department of Otorhinolaryngology and Head and Neck Surgery, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia, Hospital Canselor Tuanku Muhriz, Kuala Lumpur, Malaysia
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1. Centers for Disease Control and Prevention. Annual Data Early Hearing Detection and Intervention (EHDI) Program. [Internet]. 2017 [cited 2023 May 1]. Available from: https://www.cdc.gov/ncbddd/hearingloss/2017-data/01-data-summary.html
2. Rajadurai VS, Yip WY, Lim JSC, Khoo PC, Tan ES, Mahadev A, et al. Evolution and expansion of newborn screening programmes in Singapore. Singapore Med J. 2021;62(1 Suppl): S26–S35.
3. Mazlan R, Raman K, Abdullah A. A 10-year retrospective analysis of newborn hearing screening in a tertiary hospital in Malaysia. Egypt J Otolaryngol. 2022;38(1):135.
4. Wong YA, Mazlan R, Abdul Wahab NA, Ja’afar R, Huda Bani N, Abdullah NA. Quality measures of a multicentre universal newborn hearing screening program in Malaysia. J Med Screen. 2021;28(3):238–243. pmid:33202173
5. National Institute on Deafness and Other Communication Disorders. Quick statistics about hearing [Internet]. 2021 [cited 2023 May 3]. Available from: https://www.nidcd.nih.gov/health/statistics/quick-statistics-hearing#2
6. Joint Committee on Infant Hearing. Year 2019 Position Statement: Principles and guidelines for early hearing detection and intervention programs. J Early Hear Detect Interv. 2019;4(2):1–44.
7. Goh BS, Fadzilah N, Abdullah A, Othman BF, Umat C. Long-term outcomes of universiti Kebangsaan Malaysia cochlear implant program among pediatric implantees. Int J Pediatr Otorhinolaryngol. 2018;105:27–32. pmid:29447813
8. Yusoff YM, Umat C, Mukari S. Profiling the national cochlear implant recipients for prelingual, hearing-impaired children in Malaysia. J Sains Kesihat Malays. 2017;15(2):153–162.
9. Mitchell RE, Karchmer M. Chasing the mythical ten percent: Parental hearing status of deaf and hard of hearing students in the United States. Sign Lang Stud. 2004;4(2):138–163.
10. Wong YA, Mukari SZMS, Harithasan D, Mazlan R. Knowledge and attitude on childhood hearing loss among mothers and mothers-to-be in urban and rural areas in Malaysia. Int J Pediatr Otorhinolaryngol. 2019;124:79–84. pmid:31174022
11. Ahlert IA, Greeff AP. Resilience factors associated with adaptation in families with deaf and hard of hearing children. Am Ann Deaf. 2012;157(4):391–404. pmid:23259356
12. Hamzah NFA, Umat C, Harithasan D, Goh BS. Challenges faced by parents when seeking diagnosis for children with sensorineural hearing loss. Int J Pediatr Otorhinolaryngol. 2021;143:110656. pmid:33662710
13. Hyde M, Punch R, Komesaroff L. Coming to a decision about cochlear implantation: Parents making choices for their deaf children. J Deaf Stud Deaf Educ. 2010;15(2):162–178. pmid:20139157
14. Thakre SB, Thakre SS, Alone S. Qualitative analysis of parents’ experience of hearing loss of their school going children of a rural area of Nagpur. J Res Med Sci Off J Isfahan Univ Med Sci. 2012;17(8):764–771. pmid:23798944
15. Chang PF. Breaking the sound barrier: exploring parents’ decision-making process of cochlear implants for their children. Patient Educ Couns. 2017;100(8):1544–1551. pmid:28291575
16. Zhao F, Manchaiah V, St. Claire L, Danermark B, Jones L, Brandreth M, et al. Exploring the influence of culture on hearing help-seeking and hearing-aid uptake. Int J Audiol. 2015;54(7):435–443. pmid:25761498
17. Ebrahimi H, Mohammadi E, Mohammadi MA, Pirzadeh A, Mahmoudi H, Ansari I. Stigma in mothers of deaf children. Iran J Otorhinolaryngol. 2015;27(79):109–118.
18. Schmulian D, Lind C. Parental experiences of the diagnosis of permanent childhood hearing loss: A phenomenological study. Int J Audiol. 2020;59(1):54–60. pmid:31566461
19. Fulcher AN, Purcell A, Baker E, Munro N. Factors influencing speech and language outcomes of children with early identified severe/profound hearing loss: Clinician-identified facilitators and barriers. Int J Speech Lang Pathol. 2015;17(3):325–333. pmid:25958792
20. Majid AHA, Zakaria MN, Abdullah NAC, Hamzah S, Mukari SZMS. Determinants of caregivers’ awareness of universal newborn hearing screening in Malaysia. Int J Pediatr Otorhinolaryngol. 2017;101:107–111. pmid:28964278
21. Grandpierre V, Fitzpatrick EM, Na E, Mendonca O. School-aged children with mild bilateral and unilateral hearing loss: Parents’ reflections on services, experiences, and outcomes. J Deaf Stud Deaf Educ. 2018;23(2):140–147. pmid:29096023
22. Jean YQ, Mazlan R, Ahmad M, Maamor N. Parenting stress and maternal coherence: Mothers with deaf or hard-of-hearing children. Am J Audiol. 2018;27(3):260–271. pmid:30007031
23. Swanepoel D, Almec N. Maternal views on infant hearing loss and early intervention in a South African community. Int J Audiol. 2008;47(sup1):S44–S48.
24. Kobosko J, Sekułowicz M, Śliwa L, Rostkowska J, Jedrzejczak WW, Skarzynski H. Psychological correlates of parental burnout in hearing mothers of deaf children: personality, satisfaction with life, and posttraumatic growth. Int J Spec Educ. 2021;36(1):89–98.
25. Barker BA, Scharp KM, Chandler KL, Bowman EB. Exploring the types of stories hearing parents tell about rearing their children who use cochlear implants. Ear Hear. 2021;42(5):1284–1294. pmid:33859119
26. Ingber S, Dromi E. Actual versus desired family-centered practice in early intervention for children with hearing loss. J Deaf Stud Deaf Educ. 2010;15(1):59–71. pmid:19762352
27. Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol. 2010;74(3):265–70. pmid:20042242
28. Jackson CW, Traub RJ. Parents’ experiences with childhood deafness: Implications for family-centered services. Commun Disord Q. 2008;29(2):82–98.
29. Vieira S de S, Dupas G, Chiari BM. Cochlear implant: the family’s perspective. Cochlear Implants Int. 2018;19(4):216–224. pmid:29363411
30. Duncan J. Parental readiness for cochlear implant decision-making. Cochlear Implants Int. 2009;10(sup1):38–42. pmid:19230035
31. van der Spuy T, Pottas L. Infant hearing loss in South Africa: Age of intervention and parental needs for support. Int J Audiol. 2008;47(sup1):S30–S35. pmid:18781511
32. Eleweke CJ, Rodda M. Factors contributing to parents’ selection of a communication mode to use with their deaf children. Am Ann Deaf. 2000;375–383. pmid:11037069
33. McCracken W, Turner O. Deaf children with complex needs: Parental experience of access to cochlear implants and ongoing support. Deaf Educ Int. 2012;14(1):22–35.
34. Mazlan R, Othman S. Knowledge and attitudes of primary care physicians regarding childhood hearing loss in Malaysia. PLoS ONE. 2023;18(12):e0295972. pmid:38127879
35. Yoshinaga-Itano C, Sedey AL, Wiggin M, Chung W. Early hearing detection and vocabulary of children with hearing loss. Pediatrics. 2017;140(2):e20162964. pmid:28689189
36. Yoshinaga-Itano C, Sedey AL, Mason CA, Wiggin M, Chung W. Early intervention, parent talk, and pragmatic language in children with hearing loss. Pediatrics. 2020;146(Supplement_3):S270–S277. pmid:33139440
37. Yoshinaga-Itano C, Sedey AL, Coulter DK, Mehl AL. Language of early-and later-identified children with hearing loss. Pediatrics. 1998;102(5):1161–71. pmid:9794949
38. Na E, Toupin-April K, Olds J, Noll D, Fitzpatrick EM. Cochlear implant decision-making for children with residual hearing: Perspectives of parents. Cochlear Implants Int. 2023;1–10.
39. Peters MD, Marnie C, Tricco AC, Pollock D, Munn Z, Alexander L, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth. 2020;18(10):2119–26. pmid:33038124
40. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169(7):467–473. pmid:30178033
41. Westphaln KK, Regoeczi W, Masotya M, Vazquez-Westphaln B, Lounsbury K, McDavid L, et al. From Arksey and O’Malley and Beyond: Customizations to enhance a team-based, mixed approach to scoping review methodology. MethodsX. 2021;8:101375. pmid:34430271
42. Peters MD, Godfrey C, McInerney P, Khalil H, Larsen P, Marnie C, et al. Best practice guidance and reporting items for the development of scoping review protocols. JBI Evid Synth. 2022;20(4):953–968. pmid:35102103
43. Harrison H, Griffin SJ, Kuhn I, Usher-Smith JA. Software tools to support title and abstract screening for systematic reviews in healthcare: an evaluation. BMC Med Res Methodol. 2020;20:1–12. pmid:31931747
44. Aiello C, Ferrari D. Teleaudiology: efficacy assessment of an online social network as a support tool for parents of children candidates for cochlear implant. CODAS. 2015;27(5):411–418. pmid:26648210
45. Aras I, Stevanovic R, Vlahovic S, Stevanovic S, Kolaric B, Kondic L. Health related quality of life in parents of children with speech and hearing impairment. Int J Pediatr Otorhinolaryngol. 2014;78(2):323–329. pmid:24388315
46. Brand D, Zaidman-Zait A, Most T. Parent couples’ coping resources and involvement in their children’s intervention program. J Deaf Stud Deaf Educ. 2018;23(3):189–199. pmid:29672722
47. Cejas I, Mitchell C, Barker D, Sarangoulis C, Eisenberg L, Quittner A. Parenting stress, self-efficacy, and involvement: Effects on spoken language ability three years after cochlear implantation. Otol Neurotol. 2021;42(10S):S11–S18. pmid:34766939
48. Cejas I, Coto J, Sarangoulis C, Hoffman M, Quittner A. Development and validation of a parenting stress module for parents of children using cochlear implants. J Pediatr Psychol. 2022;47(7):785–794. pmid:35303073
49. Dirks E, Uilenburg N, Rieffe C. Parental stress among parents of toddlers with moderate hearing loss. Res Dev Disabil. 2016;55:27–36. pmid:27031795
50. Dirks E, Szarkowski A. Family-Centered Early Intervention (FCEI) involving fathers and mothers of children who are deaf or hard of hearing: Parental involvement and self-efficacy. J Clin Med. 2022;11(3):492. pmid:35159944
51. Gascon-Ramos M, Campbell M, Bamford J, Young A. Influences on parental evaluation of the content of early intervention following early identification of deafness: A study about parents’ preferences and satisfaction. Child Care Health Dev. 2010;36(6):868–877. pmid:20666784
52. Green V. Parental reaction to diagnosis of infant hearing loss. Adv Ment Health. 2020;18(1):62–72.
53. Hintermair M, Sarimski K. Fathers of deaf and hard-of-hearing infants and toddlers—experiences, needs, and challenges. J Deaf Stud Deaf Educ. 2019;24(2):84–94. pmid:30597031
54. Jackson CW, Wegner JR, Turnbull AP. Family quality of life following early identification of deafness. Lang Speech Hear Serv Sch. 2010;41(2):194–205. pmid:19755640
55. Kushalnagar P, Krull K, Hannay J, Mehta P, Caudle S, Oghalai J. Intelligence, parental depression, and behavior adaptability in deaf children being considered for cochlear implantation. J Deaf Stud Deaf Educ. 2007;12(3):335–49. pmid:17449899
56. Majorano M, Guerzoni L, Cuda D, Morelli M. Mothers’ emotional experiences related to their child’s diagnosis of deafness and cochlear implant surgery: Parenting stress and child’s language development. Int J Pediatr Otorhinolaryngol. 2020;130:109812. pmid:31841781
57. Mavrogianni T, Lampropoulou V. The involvement of fathers with their deaf children. Int J Disabil Dev Educ. 2020;67(1):45–57.
58. Munoz K, Olson W, Twohig M, Preston E, Blaiser K, White K. Pediatric hearing aid use: Parent-reported challenges. Ear Hear. 2015;36(2):279–287. pmid:25303862
59. Peker S, Korkmaz F, Cukurova I. Quality of life and parental care burden in cochlear implanted children: A case-control study. Int J Pediatr Otorhinolaryngol. 2020;136:110164. pmid:32570061
60. Piplani S, Kalaiah MK, Shastri U. Relationship between parental stress and attitude towards cochlear implantation outcomes in children in an Indian context. CoDAS. 2022;34(5):e20210125. pmid:35352791
61. Saki N, Yadollahpour A, Moniri S, Karimi M, Bayat A, Abshirini H, et al. Investigating the impacts of cochlear implantation on the happiness and self-esteem of mothers of children with severe hearing loss. Int J Ment Health Addict. 2017;15(2):288–294.
62. Sarant J, Garrard P. Parenting stress in parents of children with cochlear implants: Relationships among parent stress, child language, and unilateral versus bilateral implants. J Deaf Stud Deaf Educ. 2014;19(1):85–106. pmid:23813672
63. Sipal R, Sayin U. Impact of perceived social support and depression on the parental attitudes of mothers of children who are deaf. J CHILD Fam Stud. 2013;22(8):1103–1111.
64. Talebi H, Habibi Z, Abtahi H, Ladani N. Parental anxiety in cochlear implanted children’s family. Hear Balance Commun. 2018;16(1):17–20.
65. Soleimanifar S, Jafari Z, Zarandy MM. Validity and reliability of “parental attitudes of various aspects of cochlear implantation” questionnaire. Iran J Otorhinolaryngol. 2015;27(83):449–457. pmid:26788490
66. Archbold SM, Lutman ME, Gregory S, O’Neill C, Nikolopoulos TP. Parents and their deaf child: Their perceptions three years after cochlear implantation. Deaf Educ Int. 2002;4(1):12–40.
67. Archbold S, Sach T, O/Neill C, Lutman M, Gregory S. Deciding to have a cochlear implant and subsequent after-care: Parental perspectives. Deaf Educ Int. 2006;8(4):190–206.
68. Archbold S, Sach T, O’Neill C, Lutman M, Gregory S. Outcomes from cochlear implantation for child and family: Parental perspectives. Deaf Educ Int. 2008;10(3):120–142.
69. O’Neill C, Lutman M, Archbold S, Gregory S, Nikolopoulos T. Parents and their cochlear implanted child: questionnaire development to assess parental views and experiences. Int J Pediatr Otorhinolaryngol. 2004;68(2):149–160. pmid:14725981
70. Incesulu A, Vural M, Erkam U. Children with cochlear implants: Parental perspective. Otol Neurotol. 2003;24(4):605–611. pmid:12851553
71. Abidin RR, Santos S. V. PSI–Índice de Stress Parental. Lisb CEGOC. 2003;
72. Maslić Seršić D, Vuletić G. Psychometric evaluation and establishing norms of Croatian SF-36 health survey: Framework for subjective health research. Croat Med J. 2006;47(1):95–102. pmid:16489702
73. Zaidman-Zait A, Most T, Tarrasch R, Haddad E. Mothers’ and fathers’ involvement in intervention programs for deaf and hard of hearing children. Disabil Rehabil. 2018;40(11):1301–1309. pmid:28286960
74. Ingber S. The philosophy and practice of parental involvement in early intervention for children with hearing impairment in Israel. Unpubl Dr Diss Tel Aviv Univ Isr. 2004;
75. Dunst CJ, Jenkins V, Trivette C. The family support scale: Reliability and validity. J Individ Fam Community Wellness. 1984;1(4):45–52.
76. Abidin RR. Parenting stress index-short form. Vol. 118. Pediatric psychology press Charlottesville, VA; 1990.
77. De Brock A, Verhulst A, Gerris J, Abidin R. NOSI-Nijmegen parenting stress index, manual experimental version. 1992;
78. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess. 1988;52(1):30–41.
79. Ly A, Goldberg W. New measure for fathers of children with developmental challenges. J Intellect Disabil Res. 2014;58(5):471–484. pmid:23627678
80. Petrides KV, Furnham A. The role of trait emotional intelligence in a gender‐specific model of organizational variables. J Appl Soc Psychol. 2006;36(2):552–569.
81. Cooper A, Petrides KV. A psychometric analysis of the Trait Emotional Intelligence Questionnaire–Short Form (TEIQue–SF) using item response theory. J Pers Assess. 2010;92(5):449–457. pmid:20706931
82. Young A, Gascon-Ramos M, Campbell M, Bamford J. The design and validation of a parent-report questionnaire for assessing the characteristics and quality of early intervention over time. J Deaf Stud Deaf Educ. 2009;14(4):422–435. pmid:19617378
83. Lovibond SH, Lovibond PF. Manual for the depression anxiety stress scales. Syd Psychol Found. 1995;
84. Senkpiel A, Sarimski K. Väter von Kindern mit Down-Syndrom in der Frühförderung [Fathers of children with Down’s syndrome in early intervention]. Leben Mit -Syndr. 2016;81:12–16.
85. Zimmermann T, Lause M, Heinrichs N. Fragebogen zur partnerschaftsqualität: quality of marriage index-deutsche version (QMI-D). Verhaltenstherapie. 2015;25(1):51–53.
86. Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: A qualitative inquiry. Ment Retard. 2003;41(5):313–328. pmid:12962536
87. MacPhee D, Benson JB, Bullock D. Influences on maternal self-perceptions. Infant Behav Dev. 1986;9(236):236.
88. Brown I, Brown R, Baum N, Isaacs B, Myerscough T, Neikrug S, et al. Family Quality of Life Survey: Main caregivers of people with intellectual or developmental disabilities. 2006. Tor Can Surrey Place Cent. 2006;
89. Abidin RR. Parenting Stress Index: Manual, Administration Booklet,[and] Research Update. 1983;
90. Konstantareas MM, Homatidis S, Plowright C. Assessing resources and stress in parents of severely dysfunctional children through the Clarke modification of Holroyd’s Questionnaire on Resources and Stress. J Autism Dev Disord. 1992;22(2):217–234. pmid:1624406
91. Schumm WR, Paff-Bergen LA, Hatch RC, Obiorah FC, Copeland JM, Meens LD, et al. Concurrent and discriminant validity of the Kansas Marital Satisfaction Scale. J Marriage Fam. 1986;48(2):381–387.
92. Radin N. Primary caregiving and role-sharing fathers. Nontradit Fam Parent Child Dev Michael E Lamb. 1982;
93. Bond FW, Hayes SC, Baer RA, Carpenter KM, Guenole N, Orcutt HK, et al. Preliminary psychometric properties of the Acceptance and Action Questionnaire–II: A revised measure of psychological inflexibility and experiential avoidance. Behav Ther. 2011;42(4):676–688. pmid:22035996
94. Kroenke K, Spitzer RL, Williams JB. The PHQ‐9: Validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613. pmid:11556941
95. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist. 1980;20(6):649–655. pmid:7203086
96. Whoqol Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28(3):551–558.
97. Berry JO, Jones WH. The parental stress scale: Initial psychometric evidence. J Soc Pers Relatsh. 1995;12(3):463–472.
98. Rosenberg M. Rosenberg self-esteem scale. J Relig Health. 1965;
99. Lu L, Argyle M. Receiving and giving support: Effects on relationships and well-being. Couns Psychol Q. 1992;5(2):123–133.
100. Hisli N. Beck depresyon envanterinin universite ogrencileri icin gecerliligi, guvenilirligi.(A reliability and validity study of Beck Depression Inventory in a university student sample). J Psychol. 1989;7:3–13.
101. Kaviani H, Mousavi AS. Psychometric properties of the Persian version of Beck Anxiety Inventory (BAI). Tehran University Medical Journal.; 2008.
102. Silva J, Yamada M, Guedes E, Moret A. Factors influencing the quality of life of children with cochlear implants. Braz J Otorhinolaryngol. 2020;86(4):411–418. pmid:30898483
103. Zaidman-Zait A, Curle D. Complexity: An interpretative phenomenological analysis of the experiences of mothers of deaf children with cochlear implants and autism. J Health Psychol. 2018;23(9):1173–1184. pmid:27185249
104. DesJardin JL, Eisenberg LS. Maternal contributions: Supporting language development in young children with cochlear implants. Ear Hear. 2007;28(4):456–469. pmid:17609609
105. Boons T, Brokx JP, Dhooge I, Frijns JH, Peeraer L, Vermeulen A, et al. Predictors of spoken language development following pediatric cochlear implantation. Ear Hear. 2012;33(5):617–639. pmid:22555184
106. Misron K, Tengku Kamalden TMI, Misron LH, Devesahayam PR, Misron SNF. Long-term maintenance costs incurred by the families of pediatric cochlear implant recipients in Malaysia. Cochlear Implants Int. 2021;22(5):291–295. pmid:33794747
107. Goldblat E, Rivkin D, Konstantinov V. Associations between ethnicity, place of residence, hearing status of family and habilitation of children with hearing impairment. Isr J Health Policy Res. 2020;9:1–11. pmid:32660547
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Abstract
Objectives
Parents of children diagnosed with severe-to-profound sensorineural hearing loss may experience a range of emotions owing to a lack of knowledge and experience in dealing with such children. However, most audiology clinics only attend to children with deaf and hard of hearing (DHH) and not their parents. Thus, parents’ emotional and support needs are frequently excluded from the intervention sessions, making their own needs invisible. This study aimed to identify academic and clinical instruments used for assessing parental emotional status (PES) and ecological support systems (ESS) in early intervention and determine the factors affecting PES and ESS among parents of DHH children undergoing cochlear implantation.
Materials and methods
This scoping review followed the rigorous methodological framework; searched Medline (via OVID and EMBSCO), Scopus, and Web of Science; and selected studies relevant to validated instruments used to evaluate the PES and ESS among parents of DHH children below 6 years old. Before selecting and reviewing relevant articles, two reviewers independently assessed article titles and abstracts from the data sources. Two reviewers verified half of the first reviewer’s extracted data.
Results
Overall, 3060 articles were retrieved from the database search, and 139 were selected for full-text review following title and abstract reviews. Ultimately, this study included 22 articles. Among them, 23 and 12 validated instruments, most of which are generic measures, were used for assessing PES and ESS, respectively. Three condition-specific instruments were identified and designed to be administered following cochlear implantation surgery.
Conclusions
This study revealed that healthcare professionals who interact with parents of DHH children lack the necessary instruments, particularly for parents of children undergoing cochlear implantation surgery. Therefore, it is necessary to develop condition-specific instruments for parents who consider cochlear implantation for their children.
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; Umat, Cila
; Pei-Hua, Chen
; Chun Hong Gan; Bee See Goh