History of pain and dental care in individuals with Autism Spectrum Disorder during the Covid-19 pandemic from the perspective of caregiversABSTRACT
Objective: Assess the history of pain and dental care before and during the COVID-19 pandemic, as well as the resolution of the dental problems in individuals with ASD from the perspective of caregivers.
Methods: Caregivers from three associations of individuals with ASD in the state of Rio Grande do Sul were invited to answer an online questionnaire. They answered questions distributed into three sections: I) identification data of the patient with ASD and his caregiver; II) perception of dental access before the pandemic (until March/2020) and III) perception of dental access during the pandemic (March/2020 until 2022). Data were tabulated into a Microsoft Excel spreadsheet and analyzed using descriptive statistics.
Results: Of the 473 caregivers for individuals with ASD in the contacted groups, 72 (15.2%) responded to the survey and were included in this study. Before the COVID-19 pandemic, individuals with ASD had experienced dental pain (23.7%). Twelve of these (70.6%) allowed dental care, according to the caregivers’ reports. Regarding the experience of pain during the pandemic, 20 individuals with ASD (27.8%) felt pain, and 17 of them had also experienced pain before the pandemic.
Conclusion: The difficulty of dental access faced by families and individuals with ASD is a reality, and the persistence of dental pain history was similar before and during the COVID-19 pandemic. The preference for services in the public sector prevailed; however, the majority did not find a resolution to their issues, emphasizing the need for improvements in oral health care for this population.
Indexing terms
Autism Spectrum Disorder; COVID-19; Dental care
RESUMO
Objetivo: avaliar a história de dor e de atendimento odontológico antes e durante a pandemia da COVID-19, assim como a resolutividade do problema odontológico em indivíduos com TEA sob a percepção dos cuidadores.
Métodos: Cuidadores de indivíduos com TEA do estado do Rio Grande do Sul responderam a um formulário online. Responderam questões distribuídas em blocos sobre: I) dados de identificação do paciente com TEA e de seu cuidador; II) relato de acesso odontológico antes da pandemia (até março/2020) e III) relato de acesso odontológico durante a pandemia (março/2020 até 2022). Os dados foram tabulados e digitados em uma planilha do Microsoft Excel e analisados por meio de estatística descritiva.
Resultados: dos 473 responsáveis por indivíduos com TEA que participavam dos grupos, 72 (15,2%) responderam à pesquisa e foram incluídos neste estudo. Antes da pandemia, 17 indivíduos com TEA haviam sentido dor de origem odontológica (23,7%). Desses, 12 (70,6%) permitiram o atendimento odontológico, segundo o relato dos familiares. Em relação à experiência de dor durante a pandemia, 20 indivíduos (27,8%) sentiram dor, sendo que 17 deles também haviam sentido dor antes da pandemia.
Conclusão: a dificuldade de acesso odontológico enfrentada por famílias e indivíduos com TEA é uma realidade, e a persistência da história de dor odontológica foram semelhantes antes e durante a pandemia. Entre aqueles que buscaram atendimento, prevaleceu a procura pelo serviço na rede pública, e a maioria não teve a resolução de seus problemas, destacando a necessidade de melhorias no sistema de saúde bucal para essa população.
Termos de indexação
Transtorno do Espectro Autista; COVID-19; Assistência Odontológica
INTRODUCTION
Autism Spectrum Disorder (ASD) is characterized by challenges in communication, social interactions, compulsive interests and repetitive behaviors whose etiology remains unknown to science, although there are indications that it is multifactorial and linked to genetic and neurobiological factors. ASD can be classified according to the person’s need for support and degree of dependence, as mild, moderate or severe [1]. Dental care becomes a major challenge for dental surgeons due to the uncooperative behavior of some patients, associated with the characteristics of the disorder. Early contact with the professional is essential, in order to create a rapport, use behavior management techniques and offer appropriate preventive guidance [2,3]. The COVID-19 pandemic caused changes in people’s lives and in health services, drastically altering the routine of health care, especially dentistry. As a result, activities that were once routinely carried out in person have become strictly virtual, and others have been suspended. In several countries, as well as in Brazil, elective dental treatment was suspended or postponed, and protocols for appointments were drawn up in an attempt to minimize the risk of contamination for the dental team and patients [4]. For children with ASD, the pandemic has intensified challenges, and has been shown to increase irritability, restlessness and make it even more difficult for these patients to concentrate [5]. In contrast to the increasing number of diagnoses, the number of dentists who treat Special Care Need Patients (SCNP) is insufficient, many of them considering themselves unprepared or insecure. Another factor that makes caring for patients with ASD challenging is the lack of literature, making it more difficult for professionals to plan their treatment. Even if the professional is aware that the patient needs an individualized approach, there is a need for more scientific information and greater access [6]. Therefore, the aim of this study was to evaluate the history of pain and dental care in individuals with ASD before and during the COVID-19 pandemic, as well as the resolution of the dental problem from the perspective of caregivers.
METHODS
This cross-sectional study was conducted with caregivers of patients with ASD who are members of three associations in Rio Grande do Sul (Brazil). The caregivers were invited to fill in an online form, shared via social media and chat apps. The inclusion criteria were caregivers of patients with ASD, of all ages and living in the state of Rio Grande do Sul. Incomplete forms were excluded from the survey. The project was submitted to and approved by the Research Ethics Committee of the School of Dentistry of the Federal University of Pelotas (#5.533.157). All the participants signed a Digital Informed Consent. Those who had doubts about it were clarified. Emergency cases, reported by caregivers as “feeling pain”, were directed to a referral service.
For the data collection, an electronic form was created for the caregivers of patients. This form included 3 sections of multiple-choice questions about socioeconomic characterization, history of dental pain and dental appointments. Section 1 - Caregiver data: age (optional), degree of kinship with the individual with ASD (mandatory), caregiver’s schooling (mandatory), telephone number (mandatory), e-mail address (optional), age of the individual with ASD (mandatory), family income (optional). Section 2 - History of dental access BEFORE the COVID-19 pandemic (until March 2020): did the patient with ASD experience toothache BEFORE the pandemic? (mandatory), if yes, what was the reason for the LAST dental appointment BEFORE the pandemic? (mandatory); what is your perception of the behavior of the patient with ASD at the LAST dental appointment? (mandatory). Section 3 - History of dental access DURING the COVID-19 pandemic (March 2020 to March 2022): did the patient with ASD experience toothache during the COVID-19 pandemic? (required), did you seek dental care for the patient with ASD during the COVID-19 pandemic? (required). If yes, where was the care provided? Was the ASD patient’s problem resolved? (required). Data from optional questions (caregiver’s age and family income) were considered missing when they were not answered.
The data was tabulated in a Microsoft Excel spreadsheet and analyzed using descriptive statistics to assess the distribution of absolute and relative frequencies between the variables studied.
RESULTS
After evaluating the data, although 473 caregivers who participated in the groups were contacted, only 15.2% (72) responded to the survey and were included in this study. The 72 caregivers are responsible for 73 individuals with ASD, with one caregiver responsible for twin children. The sociodemographic characterization of the sample is shown in Table 1.
Regarding the experience of toothache and history of dental visits before the COVID-19 pandemic, the data obtained from caregivers is shown in Table 2.
History of pain and dental consultation before the COVID-19 pandemic. Pelotas. 2023. (n=72).
The main reason for consultation of individuals with ASD before the pandemic was pain (52.9%), among those who felt toothache, there were children and adults aged between 5 and 40 years, all consulted a dental surgeon and 70.6% allowed dental care.
Table 3 shows data on the history of toothache and dental appointments during the COVID-19 pandemic.
History of pain and dental appointments during the COVID-19 pandemic. Pelotas, 2023. (n=72).
The table shows that, during the pandemic in Pelotas (2023), 27.8% of participants reported toothache. Of those who sought care, the majority chose public services. Problem resolution, according to the caregiver, was divided, with almost half indicating success and the other half no clear resolution.
DISCUSSION
Dental care for individuals diagnosed with ASD remains a challenge for professionals, due to the behavioral resistance observed during dental appointments. Families face several barriers and difficulties, and, with the arrival of the COVID-19 pandemic, this outcome has been even more unfavorable for SCNP [7,8]. Unfortunately, contact with the dentist occurs late in life, and treatment becomes more complex. According to a study carried out between 2006 and 2016, the average age of the first appointment for children with SCN in the “Acolhendo Sorrisos Especiais” (Welcoming Special Smiles) Extension Project was 18 [9].
Since many children with ASD have many oral problems, it is necessary to start early dental care, using behavior management techniques to obtain the patient’s cooperation [10]. In this study, 72 caregivers of individuals with ASD responded, representing 15.2% of those with access to the survey, the return rate was very similar to other studies with similar samples [11]. There was a predominance of young-adult-mothers as a caregiver, a profile that is confirmed by other studies [11,12].
A previous study associated low income with families of SCNP [13]; this study identified higher income among some caregivers, raising the average of the total sample studied. About the caregiver’s schooling, it was observed that most of the caregivers had more than 9 years of schooling, of these, a considerable proportion had a university degree. This data indicates that the sample may represent a differentiated group of caregivers, with access to social media and a higher level of education, differing from previous studies in which more than 70% of caregivers received a lower monthly family income [11].
Looking at the results for the age of the individuals with ASD, the majority were children up to 12 years old. In this age group, all ASD individuals should already have had dental appointments to prevent the appearance of oral disease. However, it was found that most of the children sought care in situations of pain. Individuals with ASD have limitations related to the development of social skills, considering medical procedures, especially those classified as invasive, such as a dental examination, are emotionally unstable [14]. It is important to recognize the importance of a specialized and humanized multi-professional team, as well as the qualified help of parents or caregivers to prepare these patients for the dental environment.
Most of the caregivers reported that the patient with ASD did not experience toothache before the COVID-19 pandemic (62.5%). Some experienced dental pain sought care because of it and allowed it to be treated. However, oral problems persisted during the pandemic.
One of the most important findings was that more than half of the participants (58.2%) said they had not taken the patient to a dental appointment during the pandemic (2020-2021) which may be justified due to families’ fear of being infected with COVID-19. In addition, COVID-19 has generated anxiety and fear among caregivers about taking their children to a dental appointment during the pandemic because they don’t know how their child will react to the changes in personal protective equipment that professionals are now using [15]. Another study revealed that many caregivers had not sought dental care for more than a year because parents could not find adequate care for their child who had a toothache [16]. However, among the caregivers who did seek dental care, many were able to get treatment in the public service; and of those who did get treatment, a significant proportion did not have their complaints solved.
This study presents significant strengths, including addressing a topic with limited existing research, focusing on the population of individuals with special needs, and emphasizing the importance of reporting treatment resolution, providing essential data on the effectiveness of dental care for individuals with ASD. However, there are limitations to consider. The relatively low response rate highlights difficulties in engaging contacted families due to limited access to technology, caregiver overload with other responsibilities, and reluctance to participate in online surveys, potentially limiting the representativeness of the collected data.
Despite the initial expectation of finding reports of pain and access difficulties during the COVID-19 pandemic, the sample did not present contrasting data. The difficulties faced by individuals with ASD in dental care are considered to be a constant reality, regardless of the pandemic. The sample, although not representative, indicates that the problem persists, revealing the need for campaigns to train professionals to care for SCNP and to raise awareness among caregivers of children with ASD about the importance of early dental consultations.
CONCLUSION
From the experience of caregivers of individuals with ASD included in the sample, it was observed that the history of pain and challenges in dental care before and during the COVID-19 pandemic were similar and that the same individuals who experienced toothache before the pandemic remained in pain during the pandemic. Those who visited a dentist before the pandemic, most were motivated by pain and allowed dental care but did not have the problem solved. Educational campaigns are suggested to guide families of individuals with ASD and the training of oral health teams that provide care to the population.
Acknowledgements
The authors would like to thank the associations of family members of people with ASD who participated in this study.
How to cite this article
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Souza PSR, López MDR, Azevedo MS, Costa JRS, Schardosim LR. History of pain and dental care in individuals with Autism Spectrum Disorder during the Covid-19 pandemic from the perspective of caregivers. RGO, Rev Gaúch Odontol. 2024;72:e20240030. http://dx.doi.org/10.1590/1981-86372024003020240020
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Edited by
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Assistant editor: Luciana Butini Oliveira
