Abstract
Background: Amelogenesis Imperfecta (AI) denotes a heterogenous group of conditions characterized by inherited enamel defects among children which affect the structure and clinical appearance of the enamel of teeth of primary and permanent dentitions. Hence, it is well known that AI negatively impact on families and parents especially mothers and fathers as primary caregivers of affected children. However, little is known on the context in developing countries in this regard. Objective: To explore the experiences of mothers in Sri Lanka: a developing middle-income country on the family impact of having a child affected by Amelogenesis Imperfecta (AI).
Study design: A qualitative, explorative study was conducted among mothers of children having confirmed diagnoses of AI attended the Pediatric Dentistry Department, Faculty of Dental Sciences; University of Peradeniya. A series of semi-structured interviews were conducted among mothers of affected children prior to commencing treatment. The Family Impact Scale (FIS) of Locker 2002, was used for the interviewer guide. Thematic analysis was conducted to analyze the transcribed interviews.
Results: Participating mothers expressed their deep concern about having a child with AI in terms of disturbed parental/family activities, negative parental emotions and family conflict. Furthermore, mothers were much worried about quality present and future of life of their children.
Conclusions: Present findings supported the need for emotional support for mothers receiving treatment for AI. Moreover, suitability of the 4-dimensional- Family Impact Scale as a theoretical framework for family impact assessment of having children with AI in a developing country context was indicated by the findings. Explicit theoretical framework-based family impact assessment might enhance child and family- centered treatment outcomes in longstanding management of children with inherited developmental defects of teeth and craniofacial complex such as AI. Nevertheless, further research warranted to confirm the present findings.
Keywords: Amelogenesis Imperfecta; Family Impact; theoretical framework; Sri Lanka
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