Purpose <p>To explore parents’ expectations regarding the disclosure of an oligodontia diagnosis in dental practice and analysing them through the lens of core bioethical principles (principlism).</p> Methods <p>A qualitative interview study was conducted with parents of children diagnosed with oligodontia, all of whom had attended at least one consultation at a French specialist centre. Interviews were analysed using reflexive thematic analysis.</p> Results <p>The study sample consisted of 18 parents who reported frequent dissatisfaction with the way the diagnosis was disclosed. The findings suggest that a two-step disclosure process (initial diagnosis and specialist follow-up) is commonly used. Parents valued this approach, as well as referral to patient associations. They recommended this two-step process to allow time for initial emotional adjustment and subsequent discussion. Their expectations focused on clarity of information, the provision of written materials, emotional support, and sufficient consultation time. They emphasised the need for a caring attitude, confidentiality, and tailored communication that includes both the child and the parents. A tension may arise between parental desires to protect their child and the child's right to participate.</p> Conclusion <p>Effective disclosure of oligodontia requires more than clinical expertise; it demands a caring, ethically informed approach that balances clarity and empathy, as well as adequate time and resources, acknowledges uncertainty, and navigates the complex role of the child as a participant in their own care. The challenge, therefore, is to find the right balance between the duty of beneficence, the principle of non-maleficence, and the recognition of individual autonomy. Communication skills are essential for aligning clinical practice with parental expectations. These findings, although rooted in the context of a rare dental disease, have broader implications for improving communication in dentistry.</p>

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Parental expectations regarding the announcement of a diagnosis of a rare oral disease: a qualitative study in Marseille, France

  • I. Blanchet,
  • C. Tardieu,
  • F. Michel,
  • A. Camoin

摘要

Purpose

To explore parents’ expectations regarding the disclosure of an oligodontia diagnosis in dental practice and analysing them through the lens of core bioethical principles (principlism).

Methods

A qualitative interview study was conducted with parents of children diagnosed with oligodontia, all of whom had attended at least one consultation at a French specialist centre. Interviews were analysed using reflexive thematic analysis.

Results

The study sample consisted of 18 parents who reported frequent dissatisfaction with the way the diagnosis was disclosed. The findings suggest that a two-step disclosure process (initial diagnosis and specialist follow-up) is commonly used. Parents valued this approach, as well as referral to patient associations. They recommended this two-step process to allow time for initial emotional adjustment and subsequent discussion. Their expectations focused on clarity of information, the provision of written materials, emotional support, and sufficient consultation time. They emphasised the need for a caring attitude, confidentiality, and tailored communication that includes both the child and the parents. A tension may arise between parental desires to protect their child and the child's right to participate.

Conclusion

Effective disclosure of oligodontia requires more than clinical expertise; it demands a caring, ethically informed approach that balances clarity and empathy, as well as adequate time and resources, acknowledges uncertainty, and navigates the complex role of the child as a participant in their own care. The challenge, therefore, is to find the right balance between the duty of beneficence, the principle of non-maleficence, and the recognition of individual autonomy. Communication skills are essential for aligning clinical practice with parental expectations. These findings, although rooted in the context of a rare dental disease, have broader implications for improving communication in dentistry.