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


Objectives: To scope current service provision across England for management of otitis media with effusion and hearing loss in children with Down syndrome; to explore professional decision-making about managing otitis media with effusion and hearing loss; and to explore patient and public views on the direction of future research. Design: Mixed methods including a service evaluation of NHS clinical practice through a structured telephone survey; a qualitative study of professional decision-making with in-depth interviews collected and analysed using grounded theory methods; patient/public involvement consultations. Participants: Twenty-one audiology services in England took part in the evaluation; 10 professionals participated in the qualitative study; 21 family members, 10 adults with Down syndrome and representatives from two charities contributed to the consultations. Results: There was variation across services in the frequency of routine hearing surveillance, approaches to managing conductive hearing loss in infancy and provision of hearing aids and grommets. There was variation in how professionals describe their decision-making, reflecting individual treatment preferences, differing approaches to professional remit and institutional factors. The consultations identified that research should focus on improving practical support for managing the condition and supporting decision-making about interventions. Conclusions: There is system-level variation in the provision of services and individual-level variation in how professionals make clinical decisions. As a consequence, there is inequity of access to hearing health care for children with Down syndrome. Future research should focus on developing core outcomes for research and care, and on improving decision support for families.

Publication DOI: https://doi.org/10.1111/coa.13228
Divisions: College of Health & Life Sciences
Additional Information: © 2018 The Authors. Clinical Otolaryngology Published by John Wiley & Sons Ltd This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Uncontrolled Keywords: Down syndrome,child,community participation,hearing aids,middle ear ventilation,otitis media,otolaryngology,Otorhinolaryngology
Publication ISSN: 1749-4486
Last Modified: 17 Jun 2024 07:35
Date Deposited: 18 Oct 2018 10:51
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Related URLs: https://onlinel ... .1111/coa.13228 (Publisher URL)
http://www.scop ... tnerID=8YFLogxK (Scopus URL)
PURE Output Type: Article
Published Date: 2019-01-01
Published Online Date: 2018-10-08
Accepted Date: 2018-09-09
Authors: Hall, Amanda (ORCID Profile 0000-0001-8520-6005)
Pryce, Helen (ORCID Profile 0000-0001-5183-6236)
Bruce, Iain
Callery, Peter
Lakhanpaul, Monica
Schilder, Anne



Version: Published Version

License: Creative Commons Attribution

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