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

Sneller, Jennifer; Buchanan, Heather; Parekh, Susan

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.

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

• Journal Article Type: Article
• Acceptance Date: Oct 10, 2013
• Online Publication Date: Jan 10, 2014
• Publication Date: Nov 30, 2014
• Deposit Date: Apr 6, 2017
• Publicly Available Date: Apr 6, 2017
• Journal: International Journal of Paediatric Dentistry
• Print ISSN: 0960-7439
• Electronic ISSN: 1365-263X
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 24
• Issue: 6
• DOI: https://doi.org/10.1111/ipd.12086
• Public URL: https://nottingham-repository.worktribe.com/output/739055
• Publisher URL: http://onlinelibrary.wiley.com/doi/10.1111/ipd.12086/abstract
• Related Public URLs: https://www.ncbi.nlm.nih.gov/pubmed/24404886
• 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.