Oral Care Experiences of Children with Down Syndrome: Caregiver and Dentist Perspectives

Background/Objectives: Children with Down syndrome (DS) have distinct oral care needs and challenges, yet research on their care experiences, exploring caregiver and provider perspectives, is limited. Therefore, this study aimed to describe the barriers and facilitators to oral care for children with DS, as reported by caregivers and dental professionals. Methods: In this qualitative inquiry, semi-structured questions were used to elicit narratives describing oral care experiences from one caregiver focus group (n = 5), individual caregiver interviews (n = 9), and individual dentist interviews (n = 8). The transcripts were coded and thematically analyzed. Results: Three themes emerged in both groups. The first theme, Access, described the challenges in locating a dentist willing and knowledgeable about how to treat children with DS, and the variability in experiences between different contexts (i.e., community-based vs. specialty clinics). The second theme, Pre-visit Preparation, noted the potential impact of dental trauma on dental visits and recommended the use of preparation strategies, such as desensitization appointments, strategic scheduling, and visual or verbal scripts or social stories, to introduce dental encounters. The final theme, Dental Encounters, dealt with the importance of communication and interpersonal connection, as well as concerns about and support for active/passive immobilization techniques and pharmacological intervention. Sensory strategies for auditory, tactile, and vestibular input were discussed, in addition to distraction techniques, the timing and pacing of dental encounters, and parental presence/absence. Conclusions: Tailoring dental care around the unique sensory and behavioral needs of children with DS and building effective partnerships between children, parents, and dentists were emphasized for optimizing the dental care experiences of children with DS.