Understanding the Real Needs and Expectations of French Patients with Amelogenesis Imperfecta Through Facebook Content: A Qualitative Thematic Analysis

TL;DR

This study explores the needs and experiences of French patients with amelogenesis imperfecta through analysis of a Facebook group, revealing insights into their healthcare challenges and community support.

Contribution

The study provides the first systematic analysis of French AI patients' needs using Facebook group content, revealing new insights into their psychological and practical challenges.

Findings

Two main discourse trends were identified: individual experiences and collective narratives.

Four thematic classes emerged: healthcare access, genetic implications, dental symptoms, and community advocacy.

The Facebook group supports emotional well-being, peer exchange, and empowerment among AI patients.

Abstract

Background and Objectives: Facebook groups have become support spaces for people with rare diseases such as amelogenesis imperfecta (AI). While their potential for revealing patient needs is recognized, no systematic analysis has been conducted in France. This study aims to better understand the psychological and practical needs of French AI patients by analyzing interactions within a dedicated Facebook group. Methods: A semantic and thematic analysis was conducted on 881 texts (39,647 words) from the French Facebook group Amelogenesis Imperfecta. A custom tool, TEXTRA©, and IRaMuTeQ© software were used for analysis, including similarity analysis (lexical co-occurrences), Descending Hierarchical Classification (DHC), Correspondence analysis to reveal discourse structures. Results: Correspondence analysis revealed two main discourse trends: individual experiences (symptoms, treatment logistics, and medical engagement) and collective narratives (focused on awareness, mobilization, and institutional recognition). DHC identified four thematic classes: (a) difficulties accessing healthcare, (b) genetic framing and family implications, (c) dental symptoms and treatment experiences, and (d) community advocacy. These findings highlight how the group fosters emotional support, peer exchange, and empowerment. Conclusions: Online communities play a vital role in supporting patients with rare diseases. This study shows that the analysis of user-generated content can guide improvements in clinical practice, psychosocial support, and health policy.

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