Parental Perception of Children Affected by Amelogenesis Imperfecta (AI) and Dentinogenesis Imperfecta (DI): A Qualitative Study.

Abstract

Aims: This study aimed to investigate and explore parental attitudes, beliefs, values and expectations regarding aesthetics and treatment need of children in primary dentition affected by AI and DI.

Methods: A descriptive qualitative study was conducted involving a purposive sample of thirteen parents of young children affected by AI and DI. Parents were divided into two separate focus groups; mothers (n=7) and fathers (n=6). A topic guide was formulated and included open-ended questions. Eleven standardised photographs of a smile showing primary teeth affected by varying severity of AI/DI and photographs of different aesthetic treatments were utilised to stimulate the discussion. Data were audio-recorded and transcribed verbatim. A cross sectional thematic analysis approach was followed in data analysis using MAXQDA software.

Results: Analysis identified six main themes; the impact on affected children, the impact on parents, the life course of the disease, coping mechanisms, treatment need, and experience of treatment. Parents highlighted the emotional and psychosocial challenges experienced by families from the time of teeth eruption and believed that young children would be aware of their affected teeth. A feeling of guilt was evident among fathers affected by the same condition. Most parents sought dental treatment when child was approaching school age due to worries of bullying at school. Dental treatment was viewed as a way of achieving normality, protecting children from feeling different and/ or experiencing negative social reactions and as a way of maintaining structure and function. Whether affected by same condition or not, parents appeared to rely solely on the professional advice of the paediatric dentist in making all treatment related decisions.

Conclusions: The personal experience of parents affected by AI/DI plays a pivotal role in parent?s judgements of their children?s teeth and perceived need for dental treatment. The paediatric dentist has a powerful influence on parental decisions and must acknowledge the parents? perspectives when discussing options for treatment.