74 “Dental Care for Children with Disability Is Not Considered Essential Care”: Perspectives of Parents and Dentists

Abstract Background Oral health is often overlooked in the medical care for children with disabilities. While recommendations exist, these take little account of the daily reality of the main stakeholders: parents and dentists. Objectives Our goal was to explore the perspectives of parents and dentists regarding dental care for children with special needs, and contrast their lived experience with recommended best practices. Design/Methods 14 participants were recruited from a tertiary paediatric health centre to participate in semi-structured interviews: 9 parents of children with special needs (cerebral palsy, craniofacial anomalies, autism spectrum disorder) and 5 paediatric dentists. Interviews were conducted virtually in 2021. The participants were asked about oral health prevention, accessibility and treatment. The interviews were analyzed using qualitative methodology. Results Based on a thematic analysis of the content of the interviews, we identified several issues encountered by our participants in the context of the dental health of children with special needs. There were mainly issues of accessibility: ‘I work in the field and yet it was so difficult to find a dentist for my own child with disabilities’; financial barriers: ‘His dental needs are not covered because they are deemed aesthetic’; and geographical: ‘I am lucky, I have to drive 30 minutes to her appointments, but others need to drive for hours’. Parents also described difficulties in prevention: ‘I didn’t know how to care for his teeth; I used my own common sense’. The dentists emphasized the importance of communication: ‘I wish dentists were a part of the multidisciplinary healthcare team’. Also, sensitive questions regarding ethical issues, such as protective stabilization and general anesthesia were candidly answered by the majority of interviewees who accepted these practices as essential: ‘It [stabilization] is not easy to accept, but we know it is necessary’, and ‘I prefer getting the treatments done in one appointment [necessitating anaesthesia]’. These practices, in contrast, are deemed more problematic in the medical literature. Conclusion Dental care and prevention is essential since oral and dental problems can cause significant pain and distress. There is a significant gap between what “ought to be done” and the reality of families. Despite this, several practical recommendations emanated from the interviews that can be turned into actionable items in practice.