A mixed‐methods study of the management of hearing loss associated with otitis media with effusion in children with Down syndrome

Hall, Amanda; Pryce, Helen; Bruce, Iain; Callery, Peter; Lakhanpaul, Monica; Schilder, Anne G. M.

doi:10.1111/coa.13228

Cited by 5 publications

(21 citation statements)

References 8 publications

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“…Articles were evenly distributed between qualitative and quantitative study designs. Fourteen studies were qualitative [ 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], eleven were quantitative [ 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 ], and five were mixed methods [ 20 , 47 , 48 , 49 , 50 ]. Investigators in six studies completed secondary analyses, four using data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) [ 51 , 52 , 53 , 54 ], one completing a chart review [ 7 ], and one using the Intellectual Disability Exploring Answers (IDEA) database [ 55 ].…”

Section: Resultsmentioning

confidence: 99%

“…The Emotionality, Activity, Sociability Survey, Family Adaptability and Cohesion Evaluation Scale, the brief Family Assessment Measure (FAM), Family Support Scale (FSS), Family Coping Index (FCI), Family Environment Scale, Family Index of Regeneratively and Adaptation (FIRA-G), Parent-caregiver Perception Questionnaire (P-CPQ), Perceived Social Support Scale (PSSS), Family Assessment Device (FAD), Beck Depression Inventory (BDI), Index of Social Competence (ISC) and Family APGAR were each used in one study [ 36 , 38 , 40 , 43 , 56 , 57 ]. Nine studies used measures generated by the investigators to assess caregiver needs [ 22 , 39 , 42 , 43 , 45 , 46 , 47 , 49 , 50 ].…”

Section: Resultsmentioning

confidence: 99%

“…In the qualitative studies, investigators collected data through interviews or focus groups, using interview/discussion guides developed for the study. Twelve qualitative studies collected interview data [ 23 , 25 , 26 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 49 , 50 ]. Investigators in four studies collected data from focus groups [ 24 , 27 , 29 , 48 ].…”

Section: Resultsmentioning

confidence: 99%

“…Several different analytic methods were employed to analyze qualitative data. In five studies, investigators analyzed interview data by using a grounded theory approach [ 25 , 26 , 31 , 32 , 49 ]. Krueger and colleagues were the (2019) only investigators to describe using triangulation for analysis [ 28 ], while van den Driessen Mareeuw (2019) was the only author to report using framework analysis [ 35 ].…”

Section: Resultsmentioning

confidence: 99%

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Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

et al. 2021

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Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families’ care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families’ recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

et al. 2021

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“…30 Furthermore, there are significant discrepancies in access to hearing care across the UK which can create variation in the speed of identification and the level of speech and language support received. 31 The Hear Glue Ear app could potentially provide remote speech, language and listening support regardless of location for children with Down's Syndrome, in order to minimise developmental delay.…”

Section: Ome and Down's Syndromementioning

confidence: 99%

An evaluation of the Hear Glue Ear mobile application for children aged 2–8 years old with otitis media with effusion

Fordington

Brown

2020

DIGITAL HEALTH

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Objectives To evaluate the acceptability and usability of the Hear Glue Ear mobile application to guide families and support speech and language development in children with otitis media with effusion (OME). To assess the validity of the app’s game-based hearing test to estimate changes in hearing levels between audiology appointments. Method This evaluation examined 60 children aged 2–8 with and without OME, attending Cambridge Community Audiology clinics. Children’s performance in the app’s hearing test was compared to their pure tone average (PTA) obtained in clinic. Children and caregivers completed questionnaires after their first interaction with the app, and after one week of using it at home. 18 clinicians completed anonymous questionnaires after trialling the app. Results Results from the app’s hearing test show a significant correlation with clinic PTA values ([Formula: see text]). 73.1% of caregivers supported their child using the app regularly and 85% thought it enabled them to give more accurate reports to clinicians. After one week, 87.0% of families downloaded and used the app at home, and 85.7% of these felt it provided strategies to help their child. 100% of children liked the app and 93.3% found it easy to use. 77.8% of clinicians supported patients using the app regularly. Conclusions Hear Glue Ear is acceptable to children, caregivers and clinicians as part of OME management. The app’s hearing test provides a valid estimate of fluctuating hearing levels. Hear Glue Ear is a free, accessible and family-centred intervention to provide trusted information and support development, as NICE guidance recommends.

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Contributions of the neurological examination to the diagnosis of dementia in Down syndrome

Lott

Rosas

Lai

et al. 2022

The Neurobiology of Aging and Alzheimer Disease in Down Syndrome

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A mixed‐methods study of the management of hearing loss associated with otitis media with effusion in children with Down syndrome

Cited by 5 publications

References 8 publications

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

An evaluation of the Hear Glue Ear mobile application for children aged 2–8 years old with otitis media with effusion

Contributions of the neurological examination to the diagnosis of dementia in Down syndrome

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