Methods: Telephonic semi-structured interviews, were conducted with parents (n=17), of children with Rett and Down syndrome. Purposive sampling selected children with relevant dental history from two existing databases. Sampling aimed wide-ranging representation from various states within Australia and across rural/metropolitan regions.
Results: Implementing oral-care for girls with Rett syndrome was challenging for many parents and level of dental hygiene maintained by carers at group homes was a concern. Impaired speech ability of girls with Rett syndrome, made it difficult to identify possible dental pain. Bruxism, trauma (anterior teeth) due to falls and gingival swelling secondary to anti-epilepsy medication were the major dental issues. Drooling and hand-finger mouthing were others. Main anxiety for parents of children with Down syndrome was their ability to cope with lengthy orthodontic treatment schedule and maintenance of oral hygiene with appliances inside their mouth.
Parents recognized that general anaesthesia facilitated treatment, however were apprehensive citing its adverse consequences. They disliked the dentist's inability to work without general anaesthesia and also the difficulty in organizing these procedures. Finding appropriate dentist, who listens and understands was hard. Experienced dentists trained in handling patients with disabilities inside special needs unit were a favourite choice. In spite of cost-free public dental system few parents preferred private insurance to avoid lengthy waiting lists. Those attending public clinics wished preferential treatment for patients with disabilities and consistency of visiting same dentist each time.
Conclusion: This research informs important dental issues regarding little known Rett syndrome - valuable for practising dentists. Additionally it provides useful parental perceptions which will help improve available dental services, if considered by policy makers and service providers. Collectively this will advance oral health outcomes for children with intellectual disability.