Abstract
Background:
Parents and caregivers of children with cerebral palsy (CP) often experience the varied levels of stress while managing their child’s oral health care. Limited research regarding this topic emphasizes the need for a study.
Aim:
To compare the efficacy of effect of app-based oral motor therapy (OMT) and behavior therapy (BT) on stress and coping among parents/caregivers of children with CP; specifically with regard to the management of oral health care.
Settings and Design:
It is a randomized, double blinded, parallel group, multicenter trial.
Methods:
The study comprised of 228 CP children aged 4–14 years who were randomly assigned into two groups – Group 1 (mobile app based OMT) and Group 2 (BT). The parents and caregivers of children with CP were asked to fill the Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special healthcare needs (SCATOCS) questionnaire. Baseline evaluations before interventions and follow-up scores postinterventions (6 months later) were done.
Statistical Analysis:
The paired samples t-test and independent samples t-test were utilized for the study. Analysis was done using the SPSS software version 25 and results were considered statistically significant whenever P ≤ 0.05.
Results:
Intragroup comparison of SCATOCS scores in each domain showed a statistically significant (P < 0.05) improvement postintervention in both the groups. Intergroup comparison showed a statistically significant difference between the groups with respect to A1 and A2 domains (stress factors), respectively (P < 0.05), while no significant differences were observed in B1 and B2 domains (coping factors) (P > 0.05).
Conclusion:
“SCATOCS” can be used as important tool while specifically investigating stress and coping with regard to dental concerns.
Keywords: Behavior therapy, cerebral palsy, children, clinical trial, coping, dental caries, oral motor therapy, stress
Résumé
Contexte:
Les parents et les aidants d’enfants atteints de paralysie cérébrale (PC) subissent souvent des niveaux de stress variables lors de la gestion des soins bucco-dentaires de leur enfant. Le peu de recherches sur ce sujet souligne la nécessité d’une étude.
Objectif:
Comparer l’efficacité de la thérapie orale motrice (TOM) et de la thérapie comportementale (TC) basées sur des applications sur le stress et l’adaptation chez les parents et les aidants d’enfants atteints de paralysie cérébrale (PC), notamment en ce qui concerne la gestion des soins bucco-dentaires.
Contexte et Méthodologie:
Il s’agit d’un essai multicentrique randomisé, en double aveugle, en groupes parallèles.
Méthodes:
L’étude a porté sur 228 enfants atteints de PC âgés de quatre à quatorze ans, répartis aléatoirement en deux groupes: le groupe 1 (OMT via une application mobile) et le groupe 2 (BT). Les parents et les personnes en charge des enfants atteints de PC ont été invités à remplir le questionnaire SCATOCS (Outil d’évaluation du stress et de l’adaptation associé au maintien de la santé bucco-dentaire chez les enfants ayant des besoins de santé particuliers). Des évaluations initiales avant les interventions et des scores de suivi après les interventions (six mois plus tard) ont été réalisés.
Analyse Statistique:
Le test t pour échantillons appariés et le test t pour échantillons indépendants ont été utilisés pour l’étude. L’analyse a été réalisée avec SPSS version 25 et les résultats ont été considérés comme statistiquement significatifs lorsque P ≤ 0.05.
Résultats:
La comparaison intragroupe des scores SCATOCS dans chaque domaine a montré une amélioration statistiquement significative (P < 0.05) après l’intervention dans les deux groupes. La comparaison intergroupe a montré une différence statistiquement significative entre les groupes concernant respectivement les domaines A1 et A2 (facteurs de stress) (P < 0.05), tandis qu’aucune différence significative n’a été observée dans les domaines B1 et B2 (facteurs d’adaptation) (P > 0.05).
Conclusion:
Le SCATOCS peut être un outil important pour étudier spécifiquement le stress et l’adaptation aux problèmes dentaires.
Mots-clés: Thérapie comportementale, paralysie cérébrale, enfants, essai clinique, adaptation, carie dentaire, thérapie motrice orale, stress
INTRODUCTION
Cerebral palsy (CP) as a serious disorder has a great impact on the affected individual as well as on their family.[1,2,3] The fragmented healthcare options, overwhelming medical conditions, family’s financial constraints, and lack of skilled professionals further influence the physical and mental health of caregivers.[2] The parental or caregivers’ stress in turn worsens the situation of these dependent children.
Dental caries, periodontal diseases, and malocclusions are relatively frequent among children with CP;[4,5,6,7] caused by difficulties in dietary habits, frequent consumption of medicines, oral hygiene issues and limited access to dental care services.[4] Due to cognitive issues, difficulty in communication abilities, frequent spasms and involuntary movements among population with CP oral hygiene maintenance becomes an arduous task for parents and caregivers.[5,8] These problems might provoke anxiety and stress during dental interventions making treatments difficult for dentists.[5]
Thus, we tried to evaluate and compare the efficacy of app-based oral motor therapy (OMT) and behavior therapy (BT) in mitigating stress and alleviating coping abilities among parents and caregivers of children with CP, utilizing “Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special healthcare needs (SCATOCS).”[9]
METHODS
The research study was a randomized, double-blinded, parallel group, multicenter trial evaluating the efficacy of app-based OMT and BT in reducing stress and improving coping abilities of parents and caregivers of children with CP. A sample of 228 children with CP aged 4–14 years, who fulfilled the inclusion and exclusion criteria were recruited from different schools/centers providing care for children with special healthcare needs (CSHCN) as well as those who visited the pediatric dental department of three institutions from where the ethical clearance was procured.
Inclusion criteria
Children diagnosed with CP by qualified physician and/or a specialist doctor
CP children aged 4–14 years
Those children whose parents/caretakers provided a written informed consent (and assent whenever possible)
Those who answer positively of having at least one or more problems of orofacial and/or oral sensory/motor functions.
Exclusion criteria
Children who did not belong to the group of children mentioned above
Children who were not able to co-operate for oral examination.
Parents of selected children were provided with participant information sheet containing detailed description of the study and requested to sign a written informed consent. After obtaining the consent, children were randomly allocated using the computerized randomization software (Random Allocation Software 2.0) into two groups, namely, Group 1 (app based OMT) and Group 2 (BT). Out of the total 228 recruited children, 192 children successfully finished follow-up analysis. Among 192 analyzed children, 98 belonged to Group 1, while another 94 children belonged to Group 2. A total of 36 children accounted for loss to follow up, which were attributed to change of residence and irregularly attending therapeutic sessions.
Oral motor therapy (Group 1)
Oral motor exercises were delivered for a period of 6 months by a trained person and parent/caretaker with instructions from a certified oral motor/placement therapist using a mobile app “ORAL ATHLETICS” specifically developed for this research study. The mobile app was made available to them by sharing apk (android package kit) file. The app consisted of functions such as uploading pictures and videos, reading literature related to CP, personal chats, notification alerts, instruction on utilization of any oral motor/sensory tools and oral hygiene products.
Parents or caretakers assisted their children diagnosed with CP (with oromotor problems) in following the exercises. They were asked to carry out exercises for a minimum of 5 days a week for 6 months. Oromotor/sensory tools such as chewy tubes, oro-tubes, V-Pen, and uni-tips were given to the parents to enable the exercise sessions. These tools helped the children in performing various oral muscle movements such as elevation of tongue, lateralizing the tongue, jaw maneuvers, tactile oral sensory integration, articulation of speech, and feeding. In addition, facial massages, gingival and tongue stimulation, blowing exercises were done.[10,11,12,13,14]
Behavior therapy (Group 2)
BT was delivered for a period of 6 months by trained person under the guidance of a certified behavior therapist. Parents or caretakers assisted their children in following the behavior modification program schedules. Instructions, prompting, positive social reinforcement including verbal praise or patting on shoulder or giving edible or nonedible items; differential reinforcement of other nonchallenging behaviors (DRO), negative social reinforcement like verbal reprimands or warning or time-outs; and visual or auditory cues were the implemented techniques in the process of achieving the target behavior.[15,16,17]
Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special healthcare needs
“SCATOCS” is a 45-item questionnaire divided into two sections (A and B) and four domains (two in each section). Section A includes stress factors among parents/caretakers that are associated with maintenance of oral health of CSHCN, which were further sub divided as “Stress factors due to maintenance of oral hygiene” i.e., Domain A.1 and “Stress factors due to dental visit or treatment” i.e., Domain A.2. Section B includes coping factors among parents/caretakers that were associated with maintenance of oral health of CSHCN, which were further sub divided into “Coping factors associated with maintenance of oral hygiene” i.e., Domain B.1 and “Coping factors associated with a dental visit or treatment” i.e., Domain B.2. The responses for all items of the questionnaire are given a score based on a five-point Likert scale ranging from 1 to 5, corresponding to “always,” “often,” “sometimes,” “rarely,” and “never,” respectively. Lower scores indicate a higher stress levels among parents/caregivers.[9]
Ethical clearance
The research study was approved by the Institutional Ethical Committees of three institutions in the city where research was performed. It has also been registered in Clinical Trial Registry of India (with CTRI number: CTRI/2021/03/031990; URL: https://ctri.nic.in/Clinicaltrials/login.php; REF/2021/02/04139). Parents/caregivers were informed about the purpose of the research and written consent was taken.
Statistical analysis
Paired samples t-test for intragroup comparison and Independent samples t-test for intergroup comparison were utilized for the study. SPSS (IBM SPSS Statistics for Windows, version 25. Armonk, NY, USA: IBM Corp) statistical software was used to analyze the data, and results were considered statistically significant whenever P ≤ 0.05.
RESULTS
The mean age of children in Group 1 was 9.73 ± 2.64 years, whereas the mean age in Group 2 was 9.41 ± 2.42 years. Both study groups had a higher percentage of males, i.e., 66.3% in Group 1 and 58.5% in Group 2. The highest percentages of participants were affected with spastic quadriplegia.
Table 1 depicts intragroup comparison of SCATOCS scores in each domain before and after intervention within Group 1. A statistically significant reduction in the scores of 1.07 ± 0.69 in A1 domain, 0.68 ± 0.68 in B1 domain, 1.50 ± 0.93 in A2 domain, and 1.152 ± 0.86 in B2 domain was observed after the intervention (P < 0.05).
Table 1.
Intragroup comparison of change in Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special healthcare needs scores within Group 1
| SCATOCS domains | n | Mean±SD |
t statistica | P | ||
|---|---|---|---|---|---|---|
| Prescores | Postscores | Difference | ||||
| A1 | 98 | 3.37±1.097 | 2.30±0.815 | 1.071±0.692 | 15.319 | <0.001* |
| B1 | 98 | 2.46±0.976 | 1.78±0.711 | 0.684±0.683 | 9.915 | <0.001* |
| A2 | 46 | 4.07±0.800 | 2.57±0.620 | 1.500±0.937 | 10.859 | <0.001* |
| B2 | 46 | 3.89±1.016 | 2.74±0.855 | 1.152±0.868 | 8.999 | <0.001* |
*Level of significance at P<0.05, aPaired samples t-test. SD=Standard deviation, SCATOCS=Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special healthcare needs
Table 2 exhibits intragroup comparison of SCATOCS scores in each domain before and after intervention within group 2. A statistically significant reduction in the scores of 0.50 ± 0.58 in A1 domain, 0.55 ± 0.68 in B1 domain, 0.73 ± 0.78 in A2 domain, and 0.93 ± 0.90 in B2 domain was observed after the intervention (P < 0.05).
Table 2.
Intragroup comparison of change in Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special healthcare needs scores within Group 2
| SCATOCS domains | n | Mean±SD |
t-statistica | P | ||
|---|---|---|---|---|---|---|
| Prescores | Postscores | Difference | ||||
| A1 | 94 | 3.16±1.185 | 2.66±0.968 | 0.500±0.582 | 8.330 | <0.001* |
| B1 | 94 | 3.16±1.185 | 1.97±0.740 | 0.553±0.682 | 7.866 | <0.001* |
| A2 | 30 | 4.13±0.681 | 3.60±1.133 | 0.733±0.785 | 5.117 | <0.001* |
| B2 | 30 | 3.40±0.770 | 2.67±0.802 | 0.933±0.907 | 5.635 | <0.001* |
*Level of significance at P<0.05, aPaired samples t-test. SD=Standard deviation, SCATOCS=Stress and coping assessment tool associated with maintaining oral health among children with special healthcare need
Table 3 illustrates the intergroup comparison of change in SCATOCS scores in each domain before and after intervention between the two study groups. A statistically significant difference of 0.57 and 0.76 was observed between the groups in A1 and A2 (stress factors) domains, respectively (P < 0.05), while no significant differences were observed in B1 and B2 (coping factors) domains (P > 0.05).
Table 3.
Intergroup comparison of change in Stress and Coping Assessment Tool associated with maintaining Oral health among Children with Special healthcare needs scores between the two study groups
| SCATOCS domains | Group | n | Mean±SD | Difference | t-statistica | P |
|---|---|---|---|---|---|---|
| A1 | Group 1 | 98 | 1.07±0.692 | 0.571 | 6.178 | <0.001* |
| Group 2 | 94 | 0.50±0.582 | ||||
| B1 | Group 1 | 98 | 0.68±0.683 | 0.130 | 1.325 | 0.187 |
| Group 2 | 94 | 0.55±0.682 | ||||
| A2 | Group 1 | 46 | 1.50±0.937 | 0.767 | 3.710 | <0.001* |
| Group 2 | 30 | 0.73±0.785 | ||||
| B2 | Group 1 | 46 | 1.15±0.868 | 0.219 | 1.055 | 0.295 |
| Group 2 | 30 | 0.93±0.907 |
*Level of significance at P<0.05, aIndependent samples t-test. SD=Standard deviation, SCATOCS=Stress and coping assessment tool associated with maintaining oral health among children with special healthcare need
DISCUSSION
As many CP children struggle with physical limitations, such as involuntary movements, difficulty with mouth opening, and dysphagia, their ability to effectively engage in self-care tasks like brushing and flossing is compromised. This contributes to a higher risk for dental caries and gingival diseases.[18,19] Although several studies have examined the impact of poor oral hygiene on these children,[20,21,22] fewer have addressed the stress that parents experience while managing these health issues, which can lead to neglect in oral health care despite having the knowledge necessary for proper maintenance.[23,24]
The relationship between parental stress and the ability to provide consistent dental care is critical. Stressed parents may often prioritize other immediate needs over oral health, a phenomenon commonly observed in cases of chronic stress.[23] This is compounded by dental anxiety and fear, further diminishing the likelihood of parents adhering to oral health care. Thus, identifying and thereby addressing parental stress is essential for improving the dental care provided to children with CP, as it influences their health behaviors and attitudes toward oral hygiene.
The “SCATOCS” assessment tool[9] was created mainly to determine the type and level of stress that parents and other caregivers experience while addressing dental-related problems of their CSHCNs. The tool also aids in the examination of parental coping mechanisms. The lack of research on parental stress and coping related to their child’s oral health led us to employ newly developed “SCATOCS,”[9] which was a suitable instrument for comparing the benefits of various treatment modalities over a period of time. App-based oral therapy was one of the two treatment modalities that the children with CP were subjected to; while the other intervention employed was BT.
Both BT and mobile app-based oro-motor therapy showed improvements in feeding, drooling, and swallowing issues in children with CP over a 6 month follow-up. The findings of decrease in oral motor dysfunctions and further ease of maintaining oral hygiene might be the attributive factors behind reduced parent-reported stress while preserving their child’s oral health. Thus, we could notice that the two aforementioned therapies fared equally better in terms of parental and caregiver stress reduction with statistically significant results. Both interventions improved coping strategies as well, although not statistically significant. However, we were unable to address the issues on stress and coping during dental treatment in those children who had never visited a dentist.
The results of our study support the notion that raising a child with special healthcare needs, particularly children with CP, places considerable stress on parents. The research on parenting stress in children with CP consistently highlights the role of various factors such as the child’s age, severity of disability, and behavioral difficulties, all of which are well-documented stressors.[25] While we did not specifically focus on the motor functioning aspect, previous studies like those by da Costa Cunha et al.[26] and Tomasin et al.[4] point to the significant impact of motor impairments on general stress levels.
Interestingly, coping mechanisms play a significant role in managing parenting stress, with social support mechanisms identified as critical buffer.[27] Our study also found that parental stress was alleviated by external resources, including support from family members and professional advice.
The high levels of parenting stress among parents of children with CP have significant implications for both their emotional well-being and the overall health of their children, particularly in terms of oral health.[25] The dental community must recognize the broader context of caregiving stress and work toward creating supportive environments that extend beyond just clinical care,[28] fostering continuous support for both the parents and children involved.
Limitations of the study
The specific research objectives of the study limited the evaluation of individual items of “SCATOCS.”
Future prospects
Individually evaluating each of the items of “SCATOCS” in future research across various special healthcare populations might turn out to be more enlightening.
CONCLUSION
The knowledge about the level of stress and anxiety that the families of CP face can contribute to a better preparation of dental surgeon and their team while treating. With regard to this perspective, “SCATOCS” can be used as important tool while specifically investigating stress and coping.
Both the app-based oral motor and behavior therapies were found to be useful in reducing stress among parents and caregivers of children with CP. However, many more interventional therapies and combination of therapies can be studied in future using SCATOCS.
Conflicts of interest
There are no conflicts of interest.
Funding Statement
Nil.
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