This research examines the use of oral health care services for children diagnosed with FASD and barriers to accessing oral health care from the perspective of their parents/caregivers. While the majority of children (85%) had seen a dentist within the last 24 months, the percentage is lower than the national average of 91% reported in the Canadian Health Measures Survey for children between the ages of 6 to 11 . Almost half (43%) of caregivers reported some barriers to accessing oral health care. We also found that socioeconomic factors such as family income, caregiver education level, primary residence location and insurance status had a significant association with difficulty accessing oral health care for this sample population.
The social determinants of health, which are shaped by the distribution of money, power, and resources, describe the conditions in which people are born, grow, live, work and age . These non-medical factors influence health outcomes and inequities as the lower the socioeconomic status, the worse the oral health, which is consistent with our findings. Out of the factors we assessed, including income and education, half or more of our participants were on the lower end of the spectrum for these variables, which was associated with additional barriers to accessing care. When considering early childhood development, only about 30% of the caregiver participants were biological parents of their children, and 40% of caregivers were adoptive or foster parents.
The relationship between poverty and FASD are well established, with lower socioeconomic group generally having higher rates of FASD . Income and insurance are also known risk factors for poor oral health outcomes [17, 20,21,22]. Canadians who report a lower annual income were found to have higher rates of dental caries, lower utilization rates for oral health care services, and were more likely to postpone or decline recommended care due to costs . In our sample population, 63% of caregivers reported cost as barrier to accessing care. While many caregivers had access to public insurance, it is important to note that not all oral health care services (e.g. sedation or general anesthesia) are eligible benefits in public plans. Additionally, cost may refer to both the direct costs for treatment and indirect costs such as transportation, parking, as well as loss of employment income if caregivers had to take time off work to arrange for their child’s care.
Additional external environmental factors which have been described for children with developmental disabilities include structural barriers, transportation difficulties and inadequate facilities [14, 15]. In our study, caregivers frequently cited location (55%) and scheduling (48%) as barriers. Only about half of our participants lived in an urban location, so many caregivers would have to travel far distances to reach the nearest dental clinic. Some patients with developmental disabilities may need special modifications, such as protective stabilization, sedation, or general anesthesia, that are not available in all dental clinics . Almost half of the children in our study required general anesthesia for some dental treatment, which would also require access to specific facilities.
Children diagnosed with FASD may present with additional medical, physical, cognitive, communication, and behavioral issues that make routine treatment in a dental office challenging Access for oral examinations and procedures may be difficult if patients have hypersensitivity, poor oral tolerance, and limited mouth opening [2, 3]. Communication difficulties or social relatedness impairments may limit a patient’s ability to describe pain or articulate symptoms as well as cooperate with oral health care professionals, which may impede diagnosis and treatment . Anticipated behavioral issues of the child at the dental visit was a frequently reported barrier (78% of caregivers). Dental anxiety and/or fear, of either patient or caregiver, may lead to avoidance or appointment cancellations. Approximately 60% of caregivers reported that their own dental anxiety was a barrier to accessing oral health care for their child. Patients or caregivers may perceive a lack of need for oral health care, as did 48% of caregivers in our study, and some may prioritize other medical needs, as did 40% of our participants. Our findings were also consistent with previous findings demonstrating that internal personal factors were more likely to represent barriers to oral health care than external environmental factors .
Lastly, barriers to accessing care can be interpersonal, referring to the relationships between oral health care professionals, patients and their caregivers. Dentists and other oral health care staff may be unable, uncomfortable, or unwilling to treat patients with special health care needs due to inadequate training, knowledge, and experience . Previous research showed that 56% of caregivers had experienced dental offices refusing or being unable to treat their child with special health care needs . Almost half of the caregivers in our study reported having difficulties finding oral health care professionals who were capable of treating their child without a referral. Additionally, dentists in private practice, including both general and pediatric specialists, failed or lacked knowledge and capacity to engage children with disabilities . Our findings are consistent with this research, as we report that 35% of caregivers thought that their dentist lacked adequate knowledge about their child’s FASD condition and needs, and 22% reported experiencing some discrimination or disrespect during their child’s dental visit.
The strengths of this study include that it is one of the first to explore access to oral health care for children diagnosed with FASD and our sample size allowed us to make some inferences about this population. Questions in our survey instrument adapted from other surveys allowed comparison of our results to research involving children with other developmental disabilities. However, it is also important to note the limitations of this study. Due to the cross-sectional design, this study cannot determine temporality or causation. There may be sample bias, as those with the most needs may be more inclined to participate. Participants may also have recall bias, so they may not have accurately remembered their dental visits or perceptions. Additionally, the generalization of our findings are limited as we did not include a control group. Nonetheless, the findings from this research offer insight into the perceived barriers to oral health care for children diagnosed with FASD and will stimulate further research.