Abstract
Background
Periodontal status and oral hygiene practices are found to be deficient in autistic children. This is attributed to challenges in oral health practices at home and the ability to provide dental treatment in the clinic.
Aim
The aim of this research was to identify and understand parental challenges regarding oral health practices of autistic children at home and to identify the barriers related to dental treatment.
Methods
This cross-sectional study included 54 parents of Autism Spectrum Disorder (ASD) children attending autism support group centres in the Western Cape. Data collection was completed through a structured online questionnaire. The questionnaire was comprised of socio-demographics, pharmacotherapeutic treatment of the child, oral health challenges faced by parents at home, and oral health challenges in the dental clinic.
Results
Parental assistance of children during daily tooth brushing was reported by 59% of participants and the absence of flossing was particularly evident (90.7%). In the dental clinic, 58% of the parents described the child’s behaviour as uncooperative. The majority of parents reported irregular visits to the dentist with extractions being the most commonly performed procedure. Options for treatment under sedation or general anaesthesia were more readily acceptable among parents of autistic children.
Conclusion
Findings suggest that children with ASD require long-term assistance with daily oral hygiene practices. The clinical environment represents an anxiety-provoking space and the uncooperative behaviour of children with ASD is the main barrier to dental treatment.
1
Introduction
The American Psychiatric Association [ ] defines autism as a neurodevelopmental disorder, typically characterized by impaired social interaction, limited interests and repetitive patterns of stereotypical behaviours such as repetitive body movements.
The prevalence of autism seems to be increasing worldwide and evidence suggests it is not affected by geographic, ethnic or cultural variants. Proof of this is however very limited [ ]. In South Africa specifically, the prevalence of autism spectrum disorder (ASD) has not been well documented [ ]. A ten-year survey from 1996 to 2005 in a clinic for children with developmental delay in Johannesburg, reported an 8.2% increase in children who presented with autistic signs [ ]. Springer et al. [ ] conducted a study at Cape Town’s Tygerberg Hospital (a tertiary level Healthcare Centre) and reported that ASD children mostly presented with severe language impairment, comorbidities and complex autism, which required medical, educational and social support.
Autistic children reveals that they are more likely to suffer from attention deficit, hyperactivity and destructive behaviours such as repetitive head-banging [ ].
Periodontal status and oral hygiene practices are found to be deficient and poorer in autistic children, with higher plaque and gingival indices which necessitates a greater need for professional scaling [ ]. Moreover, xerostomia (due to medications) increases the risk of caries and periodontal disease in ASD patients [ ]. Poor periodontal status can be attributed to difficulties with oral hygiene practices due to reduced manual dexterity and non-compliance with brushing [ ]. Stein et al. [ 11] reported that 50% of children with autism require some or complete physical assistance during brushing. Sensory sensitivity also presents a challenge for performing daily brushing activities at home and completing dental treatment due to the inability of the child to tolerate drilling sounds, bright lights and instrumentation inside the oral cavity [ ].
An in-depth understanding of these challenges would enable the dental fraternity to establish appropriate guidelines to assist parents and help improve the oral health of their autistic children. The present research thus aimed to investigate the perspectives of parents with autistic children with regards to oral health practices and challenges. The objectives were:
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To identify the oral health practices of autistic children.
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To identify and understand the parental challenges regarding the oral health practices of their autistic children at home.
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To identify the barriers related to dental treatments as reported by the parents of autistic children based on their child’s experiences in the dental office.
2
Materials and methods
2.1
Study design
An exploratory, cross-sectional study was employed, making use of a structured online questionnaire to gather both qualitative and quantitative data.
2.2
Study population and sample size determination
Convenience sampling of parents with autistic children attending autism support group centres in the Western Cape was conducted. Seven support groups are located in the Western Cape, with a total of approximately 100 parents. A sample size of 60 participants was deemed sufficient, as confirmed by a statistician.
2.3
Inclusion criteria
The inclusion criteria were parents whose children were diagnosed with ASD and who provided informed consent to participate in the study. All children with ASD were below 12 years of age.
2.4
Exclusion criteria
Parents who were not the primary caregivers were excluded from the study.
2.5
Data collection
Due to COVID-19 and the inability to conduct face-to-face interviews, data collection was conducted online using a structured questionnaire on Google Forms. The link was distributed to the participants by “Autism Western Cape” via email. “Autism Western Cape” is a non-profit organization, which provides support and services to over 5000 families of autistic children in the Western Cape. The questionnaire included both closed- and open-ended questions to elicit information-rich data. As English is the medium of communication used during monthly support group meetings, translation of the questionnaire was not required. The questionnaire was tested on a sample of participants before the commencement of the main study to ensure clarity of the questions.
2.6
Questionnaire
The structured questionnaire was composed of 58 items, organised into four constructs. The first construct identified the socio-demographic characteristics of the child (including age, sex and the number of siblings in the household), as well as the sociodemographic characteristics of the parents (highest level of formal education, marital status and monthly income). The second construct contained questions which intended to elicit information on the child’s medical history, accompanying medical conditions, medications, self-injurious behaviour and the history of any behavioural therapy experienced/received. The third and fourth constructs were comprised of questions relating to oral hygiene practices and the accompanying challenges at home and in the dental clinic respectively, as described previously by some reports [ , , ].
Questions in the third construct were related to the oral hygiene practices and directed towards possible challenges in terms of brushing, flossing, the use of mouthwash and presence of oral habits. Questions in the fourth construct were related to autistic children’s experiences and behaviour in the dental clinic, challenges in terms of cooperation with dental treatment, and their experiences of pharmacological and non-pharmacological behaviour management.
The questions aimed to identify the challenges and then quantify the probability of their occurrence within this group; hence the use of both qualitative and quantitative analytic methods. Some questions were dichotomous (i.e. yes/no) or made use of a Likert scale, while others were open-ended, to probe for greater depth and generate more richness from the dataset.
2.7
Data analysis
Statistical analysis was conducted using StataCorp. (2021). Stata Statistical Software: Release 17. College Station, TX: StataCorp LLC. All categorical data were displayed as frequencies and percentages. All associations were performed using a Chi-squared test of association or a Fisher’s exact test if the cell frequencies were less than five. The tests were deemed statistically significant at p < 0.05.
For open-ended questions, thematic analysis was conducted on the qualitative responses using the method as described by Braun and Clarke [ ]. Data extracts were coded and themes were generated, reviewed and analysed in an iterative manner to ensure rigour of the dataset generated.
2.8
Budget
None. All data was collected online.
2.9
Ethical considerations and data protection
The study was approved by the Research Committee of the University of the Western Cape, and Biomedical Research Ethics Committee (BMREC) (BM19/7/11). Alpha numeric codes (rather than names) were allocated to participants to ensure confidentiality.
At the beginning of the online questionnaire, each parent was provided with information explaining the purpose of the research on the Google Form. In addition, the online form emphasised voluntary participation and autonomy of the information gathered. Completion of the questionnaire by the parent was not possible unless the parents give consent. Contact details of the principal investigator were included and dental advice was still provided if sought, regardless of whether parents participated in the study or not.
3
Results
A total of 54 parents (all of whom had a child diagnosed with ASD), participated in the study. Results are displayed as tables and graphs. The results indicate that the median age for autism diagnosis was three years. The Interquartile Range (IQR) was 3–5, while the median age for time spent in behaviour therapy by the children being 1.5 years (IQR: 0.75 to 2.5). Children reported to be taking medications for autism represented 75%. Challenges reported by parents in relation to brushing, flossing and oral habits of their autistic children are presented in Table 1 . The most commonly reported habit was nail biting (55.6%) as presented in Fig. 1 .
| Variable | Categories | N (%) |
|---|---|---|
| Does the child clean their teeth regularly? | No | 11 (20.4%) |
| Yes, alone | 11 (20.4%) | |
| Yes, assisted | 21 (38.8%) | |
| Yes, supervised | 11 (20.4%) | |
| Frequency of brushing per day | None | 6 (11.1%) |
| Once | 29 (53.7%) | |
| Twice/more | 19 (35.2%) | |
| Is brushing easy to do? (for those parents who assist/supervise brushing) | Yes | 2 (6.3%) |
| No | 30 (93.7%) | |
| Oral hygiene method used | Cloth only | 7 (13.0%) |
| Brush/toothpaste | 47 (87.0%) | |
| Previously tried electric toothbrush | Yes | 25 (46.3%) |
| No | 29 (53.7%) | |
| Child more cooperative with electric toothbrush (for those who use electric toothbrushes) | Yes | 12 (48.0%) |
| No | 13 (52.0%) | |
| Does the child swallow toothpaste? | Yes | 23 (42.6%) |
| No | 31 (57.4%) | |
| Does the child/parent use floss? | Yes | 5 (9.3%) |
| No | 49 (90.7%) | |
| Other methods of plaque control used | Yes | 18 (33.3%) |
| No | 36 (66.7%) | |
| Tried using sugar-free gum in the past | Yes | 8 (14.8%) |
| No | 46 (85.2%) | |
| Are oral habits exhibited? | Yes | 24 (44.4%) |
| No | 30 (55.6%) | |
| Has the parent tried to stop the habit (of those who reported habits)? | Yes | 12 (50.0%) |
| No | 12 (50.0%) |
Challenges faced by parents of autistic children regarding dental treatment in the clinics are presented in Table 2 .
| Variable | Categories | N (%) |
|---|---|---|
| Does your child’s behaviour discourage you from visiting the dentist? | Yes | 33 (61.1%) |
| No | 21 (38.9%) | |
| Has your child ever been physically restrained to complete dental treatment? | Yes | 15 (27.8%) |
| No | 39 (72.2%) | |
| Has your child previously undergone dental treatment under general anaesthesia/sedation? | Yes | 19 (35.2%) |
| No | 35 (64.8%) | |
| Do you prefer that your child’s dental treatment be completed under general anaesthesia/sedation? | Yes | 40 (74.1%) |
| No | 14 (25.9%) |
The child’s experience during their last dental visit and the reported changes in the child’s behaviour during dental appointments are presented in Figs. 2 and 3 ) .
