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

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)...

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Main Authors: Sneller, Jennifer, Buchanan, Heather, Parekh, Susan
Format: Article
Published: Wiley 2014
Online Access:https://eprints.nottingham.ac.uk/41712/
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author Sneller, Jennifer
Buchanan, Heather
Parekh, Susan
author_facet Sneller, Jennifer
Buchanan, Heather
Parekh, Susan
author_sort Sneller, Jennifer
building Nottingham Research Data Repository
collection Online Access
description 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.
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spelling nottingham-417122020-05-04T16:56:56Z https://eprints.nottingham.ac.uk/41712/ The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study Sneller, Jennifer Buchanan, Heather Parekh, Susan 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. Wiley 2014-11-30 Article PeerReviewed Sneller, Jennifer, Buchanan, Heather and Parekh, Susan (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). pp. 409-416. ISSN 1365-263X http://onlinelibrary.wiley.com/doi/10.1111/ipd.12086/abstract doi:10.1111/ipd.12086 doi:10.1111/ipd.12086
spellingShingle Sneller, Jennifer
Buchanan, Heather
Parekh, Susan
The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study
title The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study
title_full The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study
title_fullStr The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study
title_full_unstemmed The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study
title_short The impact of amelogenesis imperfecta and support needs of adolescents with AI and their parents: an exploratory study
title_sort impact of amelogenesis imperfecta and support needs of adolescents with ai and their parents: an exploratory study
url https://eprints.nottingham.ac.uk/41712/
https://eprints.nottingham.ac.uk/41712/
https://eprints.nottingham.ac.uk/41712/