Determining the views of families affected by AI on required support.
Research type
Research Study
Full title
Determining the views of families affected by Amelogenesis Imperfecta on required support.
IRAS ID
319214
Contact name
Richard Balmer
Contact email
Sponsor organisation
University of Leeds
Clinicaltrials.gov Identifier
5698563,
Duration of Study in the UK
0 years, 9 months, 1 days
Research summary
Amelogenesis Imperfecta (AI) is a hereditary, developmental condition affecting the quality and/or quantity of tooth enamel of almost all teeth to varying degrees. The literature suggests that AI can significantly impact the quality of life of children and adolescents in different ways. Chronic diseases such as AI can profoundly affect the whole family by increasing psychological stress and financial burden while seeking treatment.
Research into the impact of AI on patients is crucial in relation to the current services and support they need. However, most of the published studies concern the experience of AI patients and their families rather than exploring their needs. Support need was reported by some participants in research aimed to explore the experience of families with AI children. For instance, parents suggested a need for an information booklet about the condition to prevent having to explain it repeatedly by medical professionals.Parents have also indicated that meeting practitioners knowledgeable about their condition alleviate their tension. However, no study aimed to assess the patients and their family's needs particularly. For that purpose, this project explores the support families of children with AI needs.
The current research is an interview-based qualitative study in which data collection will be carried out through in-depth interviews with either parents or caregivers of AI patients. Up to 12 parents/caregivers of children affected by AI will be recruited. Participants will be recruited from different backgrounds, severity of the condition, and various age ranges. Data will be then transcribed and analyzed using a thematic analysis approach.
REC name
North West - Preston Research Ethics Committee
REC reference
23/NW/0245
Date of REC Opinion
17 Aug 2023
REC opinion
Favourable Opinion