Parent Satisfaction Questionnaire with Neonatal Hearing Screening Programs: Psychometric properties of the Persian version

Objectives

Measuring parent satisfaction with neonatal hearing screening programs is one of the most important indicators for assessing the quality and effectiveness and a useful instrument to identify service shortfalls. The aims of this study were to translate and adapt Parent Satisfaction Questionnaire with Neonatal Hearing Screening Programs (PSQ-NHSPs) to Persian language, determine the validity and reliability of this translation, and determine the level of parent satisfaction with neonatal hearing screening programs in Iran.

Methods

Translated Persian version of the original English PSQ-HNSPs was presented to 138 parents whose children had received hearing screening before discharge from hospital.

Results

The majority of parents responded strongly agree or agree to all dimensions of the questionnaire: overall satisfaction (90.6%), personnel in charge of hearing test (60.1%), and appointment activities (58%). Good internal consistency reliability (a = 0.89) and moderate test–retest reliability (r = 0.61) of the Persian version of PSQ-NHSPs were indicated. Construct validity was demonstrated by a significant positive relationship between overall satisfaction and specific dimensions in the questionnaire.

Conclusion

The Persian version of PSQ-NHSPs is a valid and reliable tool to assess the level of parent satisfaction with neonatal hearing screening programs.     

Quality of life of parents and siblings of children with cochlear implants

Objectives

This study examined the quality of life (QoL) of the parents and siblings of hearing-impaired children with cochlear implants (CIs).

Measuring parent satisfaction with a neonatal hearing screening program

The primary aim of the present study was to investigate parent satisfaction with a neonatal hearing screening program through use of a valid and reliable questionnaire developed for this purpose (Parent Satisfaction Questionnaire with Neonatal Hearing Screening Program; PSQ-NHSP). Eighty parents whose children had received hearing screening participated in this study. High levels of satisfaction were reported with more than 90% of parents satisfied with all aspects of the program.The PSQ-NHSP was analyzed for validity and reliability and demonstrated excellent internal consistency reliability (sigma = 0.94) and excellent test-retest reliability (p = 0.97). Content validity of the PSQ-NHSP was partially established by reviewing available literature on parent satisfaction studies in other pediatric health-care service programs. Construct validity of the PSQ-NHSP was indicated by a significant positive relationship between overall satisfaction and the three specific dimensions in the questionnaire. The satisfaction questionnaire was found to be a useful instrument for identifying service shortfalls, and routine use of the PSQ-NHSP in other neonatal hearing screening programs is recommended.     

The effectiveness of the promotion of newborn hearing screening in Taiwan

Objective

Hearing is a critical ability for the development of a child's speech and language. Many studies in different countries have shown the universal newborn hearing screening and early intervention has greatly reduced the negative impact caused by congenital hearing loss. The first universal newborn hearing screening program in Taiwan took place in MacKay Memorial Hospital in 1998 and was subsequently endorsed by the government. The incidence of bilateral congenital hearing impairment in Taiwan is approximately 2.6 per 1000 live birth. The aim of this paper is to analyze the age of diagnosis, hearing aid fitting, and intervention of congenitally hearing impaired children with and without hearing screening after public awareness and government endorsement of newborn hearing screening.

Materials and methods

There were 263 hearing impaired children participated in this study, receiving their auditory habilitation therapy at Children's Hearing Foundation from 2006 to 2010. 114 of those children went through newborn hearing screening and 149 without it. The age of diagnosis, hearing aid fitting, and auditory intervention were compared between these two groups. The age of diagnosis and intervention of congenitally hearing impaired children among different years were analyzed too.

Results

The average age of diagnosis was 8.7 months, the age of hearing aid fitting was 12.4 months and age of auditory intervention was 18.8 months for the group of hearing impaired children with newborn hearing screening. For hearing impaired children without newborn screening, their average age of diagnosis was 27.5 months; age of hearing aid fitting was 31.3 months and age of auditory intervention was 40.5 months. There were significant differences in the age of diagnosis, hearing aid fitting and auditory intervention between congenitally hearing impaired children with and without hearing screening.

Conclusions

This research indicates that newborn hearing screening facilitates early identification, diagnosis and intervention of congenitally hearing impaired children in Taiwan. The age of identification, diagnosis and intervention of congenital hearing impaired children has also been reduced gradually over the years after government endorsement of newborn hearing screening in Taiwan.     

The universal newborn hearing screening program of Taipei City

Objectives

To establish a hearing screening program with high coverage, low referral rate, high follow-up rate, and early intervention in Taipei City.

Methods

From September 2009 to December 2010, 85% delivery units in Taipei City, which includes 20 hospitals and 14 obstetrics clinics, were recruited into the screening program in two stages. A total of 15,930 babies were born in these participating hospitals and clinics during the program period. Among these neonates, 15,790 underwent hearing screening test with automatic auditory brainstem response (AABR). The screening was free of charge to the parents. The hearing screening examination was performed 24–36 h after birth. The same test was repeated between 36 and 60 h of age if the baby failed the first hearing test. The neonate was referred to the diagnostic hospitals for further investigations if he failed the second test.

Results

The screening coverage rate was 99.1% (15,790/15,930). The incidence of bilateral moderate to severe and unilateral hearing loss was 1.4 per 1000 (22/15,790) and 1.5 per 1000 (24/15,790), respectively. Four percent (626/15,790) of newborns failed to pass the initial screening test and 1.0% of newborns failed to pass the second screening test. Therefore, 1.0% newborns were referred for diagnostic assessments. The follow-up rate was 94.4% (151/160). Sixty-four percent (14/22) of babies with bilateral hearing loss completed the full diagnostic hearing tests within 3 months of birth.

Conclusions

The universal newborn hearing screening program is an adequate program for Taipei City with high coverage, low referral rate, and good follow-up rate. Screening fees covered by third parties, two-stage screening steps with AABR strategy, and the stringent monitoring system proved to be effective.

Level of evidence

2b, individual cohort study     

Sensitivity of ABR based newborn screening with the MB11 BERAphone

Objectives

The aim of this study is to evaluate the sensitivity of our hearing screening program. The evaluation was done using a questionnaire for parents of children who participated in the NHS for a targeted time frame of two years. A survey was accomplished to identify children who passed our screening protocol in the newborn period, but who were later identified to have hearing loss.

Methods

For the survey a one-year cohort was established in 2008 which included 500 children who received a hearing screening at our Center with the ABR newborn screener, MB11 BERAphone^®, two years before. Two hearing questionnaires were chosen for the survey. The LittlEARS questionnaire (MED-EL Medical Electronics GmbH) for investigating the hearing behavior of the children during the first two years of life and a second, custom-developed questionnaire (Würzburger questionnaire) investigating some aspects which are not included in the LittlEARS tool, such as speech/language development, general development as well as pathological factors that might eventually lead to a temporary hearing loss.

Results

Analysis of the Würzburger questionnaires revealed normal speech development for 92.9% of the children. For 4.7% male and 2.4% female children delayed speech development was reported. Although twice as many males were found, the statistical comparison showed no significant difference according to gender. The results of the LittlEARS questionnaire are identical to those of the Würzburger questionnaire in 98.3% of the investigated cases and in 1.7% of the cases slightly different results but on borderline: The LittlEAR scores showed normal auditory development for the childrens’ age but the Würzburger questionnaire results showed delayed speech development.

Conclusions

Based on the follow-up analysis and the results from the two questionnaires, no permanent hearing loss was found in any child two years after they passed the newborn hearing screening. Thus, we conclude that the sensitivity of the screening test was 100%, based on survey results 2 years post screening.     

Otoacoustic emissions in newborn hearing screening: A systematic review of the effects of different protocols on test outcomes

Background and objectives

Otoacoustic emission (OAE) tests are currently used to screen newborns for congenital hearing loss in many Universal Newborn Hearing Screening programs. However, there are concerns about high referral and false-positive rates. Various protocols have been used to address this problem. The main objective of this review is to determine the effects of different screening protocols on the referral rates and positive predictive values (PPV) of the OAE newborn screening test.

Methods

Eligible studies published in English from January 1990 until August 2012 were identified through searches of MEDLINE, Medline In-Process, Embase, PubMed (NCBI), ISI Web of Science, and the Cochrane Central Register of clinical controlled trials. Two reviewers independently screened the data sources, using pre-defined inclusion criteria to generate a list of eligible articles. Data extracted included the number of newborns screened, age at screening, OAE pass criteria, frequencies screened, number of retests, referral rates, and the number of newborns identified with permanent congenital hearing loss.

Results

Ten articles met the inclusion criteria, with a total of 119,714 newborn participants. The pooled referral rate was 5.5%. Individual referral rates ranged from 1.3% to 39%; the PPV from 2 to 40%. Increasing the age at initial screening and performing retests reduced the referral rate. Likewise, screenings involving higher frequencies had lower referral rates.

Conclusion

Delaying newborn hearing screening improves test results but may not be practical in all contexts. The use of higher frequencies and more sophisticated OAE devices may be useful approaches to ensure better performance of the OAE test in newborn hearing screening.     

Risks and benefits of ventilation tubes and hearing aids from the perspective of parents of children with cleft palate

Objective

To understand parents’ experiences of treatment of otitis media with effusion (OME) for children with cleft palate.

Methods

Qualitative interviews with parents of 37 children who had non-syndromic cleft palate (with or without cleft lip). They were recruited from two cleft centres in northern England. Participants talked about choices, information, decision-making and satisfaction with ventilation tubes (VTs) and/or hearing aids (HAs). Interviews were recorded and transcribed verbatim. Themes were developed using Framework Analysis.

Results

VTs and HAs were not considered as equal treatments by interviewees, due to physical risks associated with the former and social consequences with the latter. The inequality was explained within three main themes: (1) treatment recommendations – most parents did not recall being offered options when OME was first treated; VTs tended to be presented initially followed by HAs if VTs had been inserted more than once. Treatment recommendations came from medical specialists, although participants could also be influenced by other parents’ stories; (2) beliefs about mechanisms of treatments – interviewees believed VTs could address the underlying cause of OME by draining fluid. Some parents felt HAs signified a deterioration in hearing and an escalation of care. Improvements in hearing were reported by interviewees with VTs and HAs; (3) demands on parents – participants often saw the insertion of VTs as opportunistic, alongside another procedure (e.g. palatal closure). They could feel disappointed when VTs fell out or were perceived to have caused ear infections. Parental involvement was on-going for HAs (e.g. ordering batteries and tubes). Parents expressed fears about the potential for social stigma of HAs, although none reported significant teasing of children because they wore HAs.

Conclusions

Parents’ views about treatment for OME were shaped by differing perceptions about anticipated risks and benefits. VTs may have been seen as a simple fix, inserted alongside another procedure, but some interviewees had concerns about possible physical consequences. Others were more worried about anticipated social stigma associated with HAs. However, parents of children who wore a HA described them as easy to manage and well tolerated, at least until children got older and started to comment on their appearance.     

Problemy zdrowia psychicznego matek i ojców dzieci głuchych z implantem ślimakowym

Introduction

Child's deafness is a risk factor for the mental health of its parents. This study addresses a question whether mothers and fathers of the prelingually deaf children using cochlear implants (CI) experience a different intensity of psychopathology symptoms than parents of the hearing, typically developing children, and also if the intensity of those symptoms experienced by parents is related to how long their child is a cochlear implant user.

Material and methods

In this study participated 153 hearing parents of the deaf children using a single cochlear implant (111 mothers, 42 fathers), and parents of the hearing children. Mean age of deaf children was 72 months, cochlear implant use duration was between 1 and 124 months. The control group of parents has been selected taking into account their typically developing child's sex and age. The parents’ mental health has been assessed with Goldberg General Health Questionnaire GHQ-28 in Polish adaptation.

Results

Mothers of deaf, CI using children experience significantly more symptoms of anxiety and insomnia compared to the mothers of typically developing children, while fathers of these children show the tendency for the increased level of depression symptoms compared to the fathers from the control group. In the group of deaf CI children mothers relate substantially more somatic and anxiety symptoms than fathers, whereas level of experiencing depression symptoms and problems in everyday functioning is similar in mothers and fathers. No relation between the duration of child's CI use and parents’ mental health has been ascertained.

Conclusions

The mental health of parents of the deaf CI using children indicates that both mothers and fathers have problems in this sphere related to their child's deafness, but not to the duration of child's CI use. Parents of deaf, CI using children may need psychological help regardless of the time their child has been using the cochlear implant.     

Validación del cuestionario de satisfacción de los padres con los programas de cribado auditivo neonatal en español

Introduction: Although measuring parent satisfaction has been recommended as one of the important outcome measures in assessing the effectiveness of neonatal hearing screening programs, there are few published studies investigating this issue.Objectives: To validate the Spanish version of the Parent Satisfaction Questionnaire with Neonatal Hearing Screening Program (PSQ-NHSP).Methods: 112 parents whose children had received hearing screening participated in this study. Results: High levels of satisfaction were reported with more than 90 % of parents satisfied with all aspects of the program. The psychometric properties of the Spanish version of the PSQ-NHSP were analyzed and demonstrated good internal consistency (α = 0.75). Construct validity was indicated by a significant positive relationship between overall satisfaction and the three specific dimensions in the questionnaire.Discussion: The development of a valid and reliable parent satisfaction questionnaire is important for improving hearing screening programs.     

Newborn hearing concurrent genetic screening for hearing impairment—A clinical practice in 58,397 neonates in Tianjin,China

Objective

Newborn hearing screening (NHS) is used worldwide due to its feasibility and cost-efficiency. However, neonates with late-onset and progressive hearing impairment will be missed by NHS. Genetic factors account for an estimated 60% of congenital profound hearing loss. Our previous cohort studies were carried out in an innovative mode, i.e. hearing concurrent genetic screening, in newborns to improve the abilities or early diagnosis and intervention for the hearing defects. In this study, we performed the first clinical practice of this mode in Tianjin city.

Methods

A large cohort of 58,397 neonates, born between December 2011 and December 2012, in 44 hospitals in Tianjin, were screened for 20 hot spot hearing loss associated mutations from GJB2, GJB3, SLC26A4 and MTRNR1(12S rRNA). The data of genetic screening results was comprehensively analyzed with newborn hearing screening (NHS) results.

Results

We developed an accurate, high throughput genetic screening method and applied it to a total of 58,397 newborns in Tianjin. 3225 (5.52%) infants were detected to carry at least one mutation allele in GJB2, GJB3, SLC26A4 or MTRNR1. 34 (0.58‰) infants were positive for hearing loss caused by GJB2 or SLC26A4 mutations (homozygote or compound heterozygote). 54(0.93‰) infants are heterozygous of various genes. 109(1.87‰) infants had the pathological mitochondrial DNA mutation.

Conclusion

Accurate, comprehensive hearing loss associated genetic screening can facilitate genetic counseling and provides valuable prognostic information to affected infants. This united screening mode of this study was a promising clinical practice.     

Why parents refuse newborn hearing screening and default on follow-up rescreening—A South African perspective

Objectives

This study describes screen refusal and follow-up default characteristics together with caregiver reasons for screen refusal and follow-up default in two South African universal newborn hearing screening programs.

Methods

A retrospective record review of universal newborn hearing screening conducted at two hospitals (Hospital A n = 954 infants; Hospital B n = 2135) over a 31–33 month period. Otoacoustic emission screening was conducted with rescreen recommended within six weeks for a uni- or bilateral refer. Program efficacy was described according to coverage, referral and follow-up rates. A prospective telephonic interview with caregivers who declined the initial screen (n = 25) and who defaulted on follow-up (n = 25) constituted the next study component. Caregivers were randomly selected from the screening programs for a survey related to reasons for newborn hearing screening refusal and follow-up default.

Results

Screening coverage (89.3% Hospital A; 57.4% Hospital B), initial referral rates (11.6% Hospital A; 21.2% Hospital B) and follow-up return rates (56.1% Hospital A; 35.8% Hospital B) differed significantly between hospitals and were below benchmarks. The most frequent reasons for screen refusal were related to costs (72%), caregiver knowledge of newborn hearing screening (64%) and health care professional knowledge and team collaboration (16%). Almost all caregivers (96%) indicated that if costs had been included in the birthing package or covered by medical insurance they would have agreed to newborn hearing screening. Reasons for follow-up default were most commonly related to caregiver knowledge of newborn hearing screening (32%) and costs (28%). One in four caregivers (24%) defaulted on follow-up because they forgot to bring their infant for a rescreen. Only half of caregivers (48%) who defaulted on follow-up reported being aware of initial screen results while 60% reported being aware of the recommended follow-up rescreen.

Conclusion

Caregivers most commonly refused screening due to associated costs and mostly defaulted on follow-up due to an apparent lack of knowledge regarding initial screen outcome and recommendations made for follow-up. Including NHS as a mandated birthing service is essential if coverage is to be increased, while reducing follow-up defaults requires proactive reminders and improved communication with caregivers.     

Genetic counseling and prenatal diagnosis for hereditary hearing loss in high-risk families

Objective

Genetic counseling and prenatal diagnosis are very necessary and accurate to detect hereditary hearing loss, especially in high-risk families. Prenatal diagnosis is testing for diseases or conditions in fetuses before born, which gives parents the chance to prepare psychologically, financially and medically for the probable health and educational needs of the affected neonates.

Methods

54 unrelated families with children affected with non-syndromic sensorineural hearing loss were enrolled in the study and received genetic analysis with microarray and DNA sequencing technologies. Genetic counseling was provided to each participating families, and prenatal diagnosis was given to those at risk and would like to know their fetuses’ genotypes and probable hearing statuses.

Results

Half the cases in the present study were diagnosed with confirmed pathogenic mutations and clear inheritance patterns. After receiving genetic counseling, 24 carrier couples with pathogenic mutations chose to proceed prenatal diagnosis, the results of which were in accordance with the pregnancy outcomes. Infants prenatally detected to be monoallelic mutation carriers and those harbored neither deafness-causing mutations form their parents passed newborn hearing screening and six-month follow-ups, while neonates prenatally detected to be carriers of diallelic or compound heterozygous mutations developed hearing loss after birth.

Conclusions

With appropriate genetic counseling and support services provided, the genetic testing and the prenatal diagnosis of hearing loss were valued by carrier couples for the information provided for future family planning and probably the preparation for the health and educational needs of the affected neonates.     

A pilot project on hospital-based universal newborn hearing screening: lessons learned

OBJECTIVE: This paper reports the performance of a newly implemented hospital-based universal newborn hearing screening programme and the challenges to the effective implementation. METHODS: Data of 4437 babies screened from April 2003 to February 2004 at Hospital Universiti Kebangsaan Malaysia was analyzed to measure the performance of the newborn hearing screening programme. Quality indicators, which include the coverage rate, initial refer rate, return for follow-up rate, ages of diagnosis and intervention were calculated. Factors contributing to poor compliance for follow-up were examined through questionnaire survey of 341 parents who did not bring their babies for the initial screening follow-up. RESULTS: The findings of this study revealed unsatisfactory performance of the hearing screening programme compared to the Joint committee of Infant Hearing recommendation [Joint Committee on Infant Hearing Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs, Pediatrics 106 (4) (2000) 798-817]. The coverage rate, initial refer rate, and return for follow-up rate were 84.64, 11.97 and 56.97%, respectively. The average age of diagnosis was 3.56 months (S.D. 1.33). Only 1 of the 16 babies identified as having hearing loss through the screening programme has been fitted with hearing aids. Delay in coming to audiological certainty was one of the reasons hampering early intervention of these children. The commonly cited reasons for not returning for screening follow-up reflect the need to create public awareness of the importance of early diagnosis and intervention of hearing loss. CONCLUSIONS: The implementation of the present screening programme needs to be reviewed. Factors contributing to its unsatisfactory performance must be identified and steps must be taken to resolve them so that early identification and intervention of permanent congenital hearing loss can become a reality.     

Radiological analysis of the ethmoid roof in the Malaysian population

Objective

To ascertain the prevalence of the lateral lamella of the cribriform plate height according to Keros classification in the Malaysian population, and to find if there is any difference between the major ethnic groups in Malaysia (Malay, Chinese, Indian).

Methods

Retrospective analysis of 150 CT scan studies of the paranasal sinuses.

Results

The mean height of the lateral lamella of the cribriform plate (LLCP) in 300 sides was 2.64 mm. Keros type I was seen in 240 sides (80%), while, Keros type II was seen in 60 sides (20%). There was no significant difference in the distribution of Keros classification among the major ethnic groups of Malaysia (Malay, Chinese, Indian). Keros type I was seen in 103 sides in males and 137 sides in females. Significant difference was observed in type II between the male and female (47 sides in males and 13 sides in female; p-value <0.001). When comparing the difference in the height of the LLCP in the same individual, asymmetry was observed in 139 patients. The LLCP height was higher on the left side in 71 patients and higher on the right in 68.

Conclusion

The understanding of the anatomy of the ethmoid roof with its possible variation is crucial to give the surgeon the optimal information about the possible risk that one can face during the surgery.     

Enlarged vestibular aqueduct syndrome mimicking otosclerosis in adults

Introduction

An enlarged vestibular aqueduct (EVA) results in hearing loss which is often progressive and heterogenous, the long-term natural history of which is not well understood. Patients born before the era of newborn hearing screening can present as adults with previously undiagnosed EVA.

Methods

A retrospective chart review of patients seen at a tertiary adult academic otologic clinic from 2004 to 2012 were reviewed and cases of EVA were identified.

Results

Adult EVA was found to present with a mixed progressive hearing loss with absent stapedial reflexes.

Conclusion

Enlarged vestibular aqueduct abnormality can present in adulthood and mimic other more common pathology such as otosclerosis.     

The nasopharynx in infants with cleft lip and palate

Objective

The purpose of this study was to use three-dimensional computed tomography data and computer imaging technology to assess the skeletal components of the naso-pharyngeal area in patients with cleft lip and palate and to quantify anatomical variations.

Methods

CT scans were obtained from 29 patients of Malay origin with cleft lip and palate aged between 0 and 12 months and 12 noncleft patients in the same age group, using a GE Lightspeed Plus Scanner housed in Hospital Universiti Sains Malaysia. Measurements were obtained using the ‘Persona’ three-dimensional software package, developed at Australian Craniofacial Unit, Adelaide.

Results

The results of the present study show that there is an increased nasopharyngeal space in cleft lip and palate that may lead to compression of the nasopharyngeal structures, including the Eustachian tube. Alterations of the medial pterygoid plate and the hamulus may lead to an alteration in the origin and orientation of the tensor veli palatini muscle leading to alteration in its function.

Conclusions

These anatomical variations may compromise the dilatory mechanism of the Eustachian tube, thus leading to recurrent middle ear infections in cleft children and subsequent loss of hearing.     

Qualitative analysis of parents’ experience with receiving the news of the detection of their child's hearing loss

Objective

Despite the fact that clinicians are responsible for delivering bad news, they have been shown to lack both confidence and skill in performing this basic task. The time immediately after the detection of childhood hearing loss is perceived as stressful. We conducted a qualitative study to assess parents’ experiences with receiving the bad news of the detection of their child's hearing loss.

Study design

Semi-structured interviews were conducted with families of children with hearing loss identified during early childhood.

Setting

A rehabilitation center treating pre-school children in the north of Israel.

Patients

14 families/parents of children diagnosed prior to the implementation of a universal screening program.

Main outcome measure

Parents’ perceptions of the manner in which the information regarding the detection of their child's hearing loss was given, and what their feelings were at the time.

Results

50% of parents expressed dissatisfaction with the process of the breaking of the bad news. ABR is perceived by parents and health professionals alike as the definitive moment of diagnosis. The emotions experienced by parents at the moment of the breaking of the bad news were predominantly shock and upset. The meaning of the news was perceived differently under different circumstances. Information given bluntly, without empathy, was a frequent complaint. Parents repeatedly stated the importance of the formulation of a plan for the future.

Conclusions

Qualitative enquiry provided valuable information. Effective strategies for the breaking of bad news should become an integral part of universal neonatal screening programs.     

Parents’ experiences and views of caring for a child with a tracheostomy: A literature review

Objectives

To review the published/reported experiences and views of parents’ whose child has had a tracheostomy. To date, no review has focused specifically on parents’ experiences and views of having a child with a tracheostomy.

Methods

MEDLINE, CINAHL, PsycINFO and Embase were systematically searched from 1990 to 2012 and a review of reference lists was conducted. The review draws on articles where parents’ views of caring for their child's tracheostomy were either the sole focus of the research or where parental views of caring for their child's tracheostomy have been sought as a subsidiary aim. Studies relating to the aims of the review were examined using quality appraisal tools and in line with criteria for inclusion of studies. Studies were excluded if findings were about adults, studies that only focused on children's or sibling's views were not based on empirical work (e.g. literature reviews or expert commentary) or were not published in the English language. Findings were summarised under thematic headings.

Results

The systematic database search identified 442 citations of which 10 were eligible for inclusion in the review. Of those 10 studies six were quantitative and four qualitative. Only one paper published qualitative data specifically on parents’ experiences about their tracheotomised child. The three main themes identified were parents’ experiences of caregiving, their social experiences and experiences of service delivery of having a child with a tracheostomy. Although parents encountered emotional and social challenges, some positive responses to these challenges were reported.

Conclusion

This review identifies a lack of qualitative research on parents’ views of having a child with a tracheostomy. Issues surrounding parental management of tracheostomy require further investigation. This review has identified the need to elicit parents’ longitudinal experiences of having a child with a tracheostomy.     

Aetiology of congenital hearing loss: A cohort review of 569 subjects

Objective

Newborn hearing screening was implemented in Flanders about fifteen years ago. The aim of this study was to determine the aetiology of hearing loss detected by the Flemish screening programme.

Methods

From 1997 to 2011, 569 neonates were referred to our tertiary referral centre after failed neonatal screening with Auditory Brainstem Responses. In case hearing loss (HL) was confirmed, further diagnostic testing was launched. A retrospective chart review was performed analysing the degree of HL, risk factor and aetiology.

Results

Metabolic disorders (0.5%), infectious diseases (35.8%), congenital malformations (6.1%) and genetic abnormalities (19.8%), whether or not syndromic, were retained. In 35% of the subjects no obvious aetiology could be determined in the current study.

Conclusion

In contrast to the literature findings, this series shows a genetic syndromic cause in 80% of the genetic bilateral HL cases. On the other hand connexin positive diagnoses were mostly underrepresented in this study, showing the need for better screening.