Life circumstances of children and adolescents after cochlear implantation

Introduction: In Sweden, about 300 children every year are born with hearing impairment (HI), and about 50 of them with severe HI. Today, these children are treated with either hearing aid (HA) or cochlear implant (CI). The goal of the CI is for the child to develop hearing and spoken language, facilitating communication with the hearing majority society and thus increasing the child’s wellbeing and participation in society. Where the child is not using his or her CI, the intended spoken language development does not occur. Cochlear implantation was introduced as a treatment in the 1990s, so intensive research and development has taken place in the field. However, few studies have focused on the children’s physical, emotional, and social situation or on the functioning of the CI, especially from children’s own perspective. Aim: The overall aim of the thesis is to provide increased knowledge about life circumstances and condition of children and adolescents after surgery with CI. Methods: This thesis comprises four studies on children with a CI, focusing: children’s own experience of using CI compared to the experience of children with HA (Study I); the children’s self-reports of their mental health compared to their parents’ and teachers’ perspectives (Study II); the cildren’s personal and social resources (Study III); and the parents’ perspective of having a child with CI (Study IV). Both quantitative (studies I–III) and qualitative (Study IV) methodology has been used. Studies I–III are cross-sectional, based on questionnaires completed by four participant groups: children with CI, children with HA, parents, and teachers, whose data has been used in different ways in the three studies. Children with CI included in studies I–III were obtained from the same sample (36 children with CI). Study IV is a retrospective, qualitative study using meaning categorization to analyze individual interviews with twelve parents of children with CI. Results: In Study I, children with CI were able to function well in everyday life situations, also in comparison to children with HA. In Study II, they expressed greater concern about their mental health compared to their parents and teachers. However, they did not show more difficulties or mental ill health compared to children in general. Children with CI who had a high sense of coherence (SOC) also had good mental health. Closeness of the social network, especially in school, was seen as important for good mental health (Study III). Parents of children who use the CI full-time were determined and used clear parenting strategies whereas parents of children with limited use of the CI paid more attention to attitudes in their environment (Study IV). Conclusion: Children who were implanted with CI during the period 1994 - 2005 had good functioning in everyday life; better than children with HA in outdoor and group activities. They showed good personal and social resources. This, however, does not mean that difficulties do not exist. The child’s own perspective on e.g. mental health problems needs to be attended to. Good parenting strategies are facilitating the child’s use of the CI, why it is important to enhance parent’s knowledge about disability, and it’s challenges, foster positive coping strategies, and give individualized rehabilitation both to the parents and the child

Correlates of Orthographic Learning in Swedish Children With Cochlear Implants

This study set out to explore the cognitive and linguistic correlates of orthographic learning in a group of 32 deaf and hard of hearing children with cochlear implants, to better understand the factors that affect the development of fluent reading in these children. To date, the research about the mechanisms of reading fluency and orthographic learning in this population is scarce. The children were between 6:0 and 10:11 years of age and used oral language as their primary mode of communication. They were assessed on orthographic learning, reading fluency and a range of cognitive and linguistic skills including working memory measures, word retrieval and paired associate learning. The results were analyzed in a set of correlation analyses. In line with previous findings from children with typical hearing, orthographic learning was strongly correlated with phonological decoding, receptive vocabulary, phonological skills, verbal-verbal paired-associate learning and word retrieval. The results of this study suggest that orthographic learning in children with CI is strongly dependent on similar cognitive and linguistic skills as in typically hearing peers. Efforts should thus be made to support phonological decoding skill, vocabulary, and phonological skills in this population

Predictors of Reading Comprehension in Children With Cochlear Implants

Children with a profound hearing loss who have been implanted with cochlear implants (CI), vary in terms of their language and reading skills. Some of these children have strong language skills and are proficient readers whereas others struggle with language and both the decoding and comprehension aspects of reading. Reading comprehension is dependent on a number of skills where decoding, spoken language comprehension and receptive vocabulary have been found to be the strongest predictors of performance. Children with CI have generally been found to perform more poorly than typically hearing peers on most predictors of reading comprehension including word decoding, vocabulary and spoken language comprehension, as well as working memory. The purpose of the current study was to investigate the relationships between reading comprehension and a number of predictor variables in a sample of twenty-nine 11-12-year-old children with profound hearing loss, fitted with CI. We were particularly interested in the extent to which reading comprehension in children with CI at this age is dependent on decoding and receptive vocabulary. The predictor variables that we set out to study were word decoding, receptive vocabulary, phonological skills, and working memory. A second purpose was to explore the relationships between reading comprehension and demographic factors, i.e., parental education, speech perception and age of implantation. The results from these 29 children indicate that receptive vocabulary is the most influential predictor of reading comprehension in this group of children although phonological decoding is, of course, fundamental.Funding Agencies|Riksbankens Jubileumsfond [P15-0442:1]; Horselforskningsfonden [2014-460]; Jerringfonden</p

Correlates of Orthographic Learning in Swedish Children With Cochlear Implants

This study set out to explore the cognitive and linguistic correlates of orthographic learning in a group of 32 deaf and hard of hearing children with cochlear implants, to better understand the factors that affect the development of fluent reading in these children. To date, the research about the mechanisms of reading fluency and orthographic learning in this population is scarce. The children were between 6:0 and 10:11 years of age and used oral language as their primary mode of communication. They were assessed on orthographic learning, reading fluency and a range of cognitive and linguistic skills including working memory measures, word retrieval and paired associate learning. The results were analyzed in a set of correlation analyses. In line with previous findings from children with typical hearing, orthographic learning was strongly correlated with phonological decoding, receptive vocabulary, phonological skills, verbal-verbal paired-associate learning and word retrieval. The results of this study suggest that orthographic learning in children with CI is strongly dependent on similar cognitive and linguistic skills as in typically hearing peers. Efforts should thus be made to support phonological decoding skill, vocabulary, and phonological skills in this population.Funding Agencies|Riksbankens Jubileumsfond [P15-0442: 1]; Swedish Research Council for Health, Working Life and Welfare [COFAS 2011-0086]</p

X-linked Malformation Deafness : Neurodevelopmental Symptoms Are Common in Children With IP3 Malformation and Mutation in POU3F4

Objective: Incomplete partition type 3 (IP3) malformation deafness is a rare hereditary cause of congenital or rapid progressive hearing loss. The children present with a severe to profound mixed hearing loss and temporal bone imaging show a typical inner ear malformation classified as IP3. Cochlear implantation is one option of hearing restoration in severe cases. Little is known about other specific difficulties these children might exhibit, for instance possible neurodevelopmental symptoms. Material and methods: Ten 2; 0 to 9; 6-year-old children with IP3 malformation deafness (nine boys and one girl) with cochlear implants were evaluated with a retrospective chart review in combination with an additional extensive multidisciplinary assessment day. Hearing, language, cognition, and mental ill-health were compared with a control group of ten 1; 6 to 14; 5-year-old children with cochlear implants (seven boys and three girls) with another genetic cause of deafness, mutations in the GJB2 gene. Results: Mutations in POU3F4 were found in nine of the 10 children with IP3 malformation. Children with IP3 malformation deafness had an atypical outcome with low level of speech recognition (especially in noise), executive functioning deficits, delayed or impaired speech as well as atypical lexical-semantic and pragmatic abilities, and exhibited mental ill-health issues. Parents of children with IP3 malformation were more likely to report that they were worried about their childs psychosocial wellbeing. Controls, however, had more age-typical results in all these domains. Eight of 10 children in the experimental group had high nonverbal cognitive ability despite their broad range of neurodevelopmental symptoms. Conclusions: While cochlear implantation is a feasible alternative for children with IP3 malformation deafness, co-occurring neurodevelopmental anomalies, such as attention deficit hyperactivity or developmental language disorder, and mental ill-health issues require an extensive and consistent multidisciplinary team approach during childhood to support their overall habilitation.Funding Agencies|Horselskadades Riksforbund (National Association of Hearing Impairment); ALF ( Stockholm County Council)Stockholm County Council; ALF (Karolinska Institute); ALF (Karolinska Hospital)</p

International care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward

Background: Pediatric Post-COVID-Condition (PPCC) clinics treat children despite limited scientific substantiation. By exploring real-life management of children diagnosed with PPCC, the International Post-COVID-Condition in Children Collaboration (IP4C) aimed to provide guidance for future PPCC care. Methods: We performed a cross-sectional international, multicenter study on used PPCC definitions; the organization of PPCC care programs and patients characteristics. We compared aggregated data from PPCC cohorts and identified priorities to improve PPCC care. Results: Ten PPCC care programs and six COVID-19 follow-up research cohorts participated. Aggregated data from 584 PPCC patients was analyzed. The most common symptoms included fatigue (71%), headache (55%), concentration difficulties (53%), and brain fog (48%). Severe limitations in daily life were reported in 31% of patients. Most PPCC care programs organized in-person visits with multidisciplinary teams. Diagnostic testing for respiratory and cardiac morbidity was most frequently performed and seldom abnormal. Treatment was often limited to physical therapy and psychological support. Conclusions: We found substantial heterogeneity in both the diagnostics and management of PPCC, possibly explained by scarce scientific evidence and lack of standardized care. We present a list of components which future guidelines should address, and outline priorities concerning PPCC care pathways, research and international collaboration