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The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study

Sneller, Jennifer; Buchanan, Heather; Parekh, Susan

Authors

Jennifer Sneller

Susan Parekh



Abstract

BACKGROUND:
Amelogenesis imperfecta (AI) is a rare inherited dental defect where enamel does not form properly on the teeth. Research has shown that adolescents with AI may experience adverse psychosocial effects; however the impact on parents has not been explored.
AIMS:
We aimed to explore: (1) experience and perceptions of AI from both the adolescent and their parent's perspective (2) their views on the usefulness of an online support group (OSG) for patients/parents and the potential salient functions of such a resource.
DESIGN:
We conducted two focus groups; one for adolescent AI patients and one for their parents. Transcripts were analysed using Thematic Analysis.
RESULTS:
Three themes emerged from the data: 'Living with AI: Do I look bothered?', 'Need for the 'right' online environment' and 'Support needs: Information and beyond'.
CONCLUSIONS:
The adolescents did not appear to experience adverse psychosocial effects of having AI, which was contrary to their parents' perceptions. Parents reported some adverse consequences of having a child with AI (e.g., practical challenges). If an OSG was to be developed, it would need to be primarily information based and moderated by an AI specialist. Parents may benefit from additional support beyond that of information, such as emotional and tangible support.

Journal Article Type Article
Publication Date Nov 30, 2014
Journal International Journal of Paediatric Dentistry
Print ISSN 0960-7439
Electronic ISSN 1365-263X
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 24
Issue 6
APA6 Citation Sneller, J., Buchanan, H., & Parekh, S. (2014). The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study. International Journal of Paediatric Dentistry, 24(6), https://doi.org/10.1111/ipd.12086
DOI https://doi.org/10.1111/ipd.12086
Publisher URL http://onlinelibrary.wiley.com/doi/10.1111/ipd.12086/abstract
Related Public URLs https://www.ncbi.nlm.nih.gov/pubmed/24404886
Copyright Statement Copyright information regarding this work can be found at the following address: http://eprints.nottingh.../end_user_agreement.pdf
Additional Information This is the peer reviewed version of the following article: Sneller, J., Buchanan, H., Parekh, S. The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study. International Journal of Paediatric Dentistry 2014; 24: 409–416, which has been published in final form at doi:10.1111/ipd.12086. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.

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Copyright Statement
Copyright information regarding this work can be found at the following address: http://eprints.nottingham.ac.uk/end_user_agreement.pdf





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