ORIGINAL ARTICLE
REVISTA DE LA FACULTAD DE MEDICINA HUMANA 2024 - Universidad Ricardo Palma
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1 Instituto de Investigaciones en Ciencias Biomédicas, Universidad Ricardo Palma, Perú.
ABSTRACT
Introduction: Autism spectrum disorder is a neurodevelopmental disorder that as a consequence has
high physical, psychic and economic demand from parents.
Objective: To determine the association between the level of stress and the use of coping
strategies of parents of autistic children of the ARIE Villa El Salvador institute.
Methods: Quantitative observational analytical study. Two surveys were used: the Parental Stress
Questionnaire, modified Spanish version CEP (PSI-SF) and the abbreviated Multidimensional Coping Styles
Assessment Scale Questionnaire.
Results: A total of 103 parents were surveyed. The level of medium-high stress was 93.14%. Of the
coping strategies; strategy A the strategy with the highest mean was planning (10.81 points), of
strategy B the strategy with the highest mean was positive reinterpretation and growth (11.22 points),
and of strategy C the strategy with the highest mean was mental disconnection (7.53 points). A positive
correlation (0.86) was found between the level of stress and the coping test. In the multiple regression
it was observed that the level of stress increases 0.81 points (95%CI: 0.718-0.909; p<0.001) for each
point that the coping test increases. Furthermore, we found a strength of association between the two of
0.7402.
Conclusions: There is an association between stress level and stress coping in parents. The
strategies with the highest scores were planning, positive reinterpretation and growth, and mental
disconnection.
Keywords (MeSH): Autistic spectrum disorder, psychologic adaptation, child (MeSH).
RESUMEN
Introducción: El trastorno del espectro autista es un trastorno del neurodesarrollo que como
consecuencia tiene la alta demanda física, psíquica y económica por parte de los padres.
Objetivo: Determinar la asociación entre el nivel de estrés y el uso de estrategias de
afrontamiento de padres de niños autistas del instituto ARIE Villa El Salvador.
Métodos: Estudio analítico cuantitativo observacional. Se utilizaron dos encuestas: Cuestionario
de estrés parental, versión española modificada CEP (PSI-SF) y Cuestionario abreviado de la Escala
Multidimensional de Evaluación de los Estilos de Afrontamiento.
Resultados: Se trabajó con un total de 103 padres de familia. El nivel de estrés medio-alto fue
del 93.14%. De las estrategias de afrontamiento, la estrategia A con mayor media fue la planificación
(10.81 puntos), de la estrategia B la reinterpretación positiva y crecimiento (11.22 puntos), y de la
estrategia C la desconexión mental (7.53 puntos). Se encontró una correlación positiva (0.86) entre el
nivel de estrés y el test de afrontamiento. En la regresión múltiple se observó que por cada punto que
incrementa el test de afrontamiento, el nivel de estrés aumenta 0.81 puntos (IC95%: 0.718-0.909;
p<0,001). Además, se encontró una fuerza de asociación entre ambos de 0.7402.
Conclusiones: Existe asociación entre el nivel de estrés y el afrontamiento por parte de los
padres de niños autistas. Las estrategias con mayor puntuación fueron la planificación, la
reinterpretación positiva y crecimiento, y la desconexión mental.
Palabras clave (DeCS): trastorno del espectro autista, adaptación psicológica, niños (DeCS:
Bireme).
INTRODUCTION
Autism Spectrum Disorder (ASD) is currently understood as a neurodevelopmental disorder reflected in difficulties in communication and social interaction, demonstrated by repetitive and restricted patterns of behavior, activities, and interests. ASD includes autistic disorder (common autism), pervasive developmental disorder not otherwise specified, childhood disintegrative disorder, and Asperger's disorder or Asperger's syndrome(1).
In the United States, an epidemiological study conducted by the Centers for Disease Control and Prevention showed an increase in the prevalence of childhood autism from 1 in every 500 to 1,000 children, with the predominant age being 0 to 3 years(2). In Peru, 15,700 individuals have ASD, of which 91% are under 11 years old(3).
Among its consequences is the high physical, psychological, and economic demand on parents. Additionally, the level of stress is usually high due to the requirements that children with ASD need, leading parents to develop adaptive coping strategies to manage social and family aspects(4).
These coping strategies involve cognitive and behavioral processes that are constantly changing and developed to handle specific external and/or internal demands perceived as excessive or overwhelming(5).
For the reasons mentioned above, the objective of this study was to determine the association between the level of stress and the use of coping strategies by parents of autistic children with different degrees of dependency at the Instituto ARIE in Villa El Salvador.
MATERIALS AND METHODS
Study design
This is an observational, quantitative, cross-sectional study conducted on a
population of parents of patients with autism attended at the Instituto para el desarrollo infantil ARIE
in Lima, Peru.
The study included the father or mother of children with autism who are treated at the Instituto para el desarrollo infantil ARIE, who are adults, willing to participate in the survey, and who completed the informed consent form. All incomplete or improperly filled surveys and parents who were not caring for a child with autism were excluded. A sample of 103 parents with children with ASD was evaluated.
Variables
The dependent variable was the coping strategies measured using the Brief COPE
Inventory, a Multidimensional Coping Styles Assessment Scale Questionnaire.
The main independent variable was the level of parental stress measured using the modified Spanish version of the Parental Stress Index (PSI-SF).
Other variables included age, gender, number of children, and the presence of additional caregivers.
Procedures
With prior permission and knowledge of the parents, the researchers conducted
surveys with the parents, and this information was transcribed into an Excel sheet without any
identifying data; only variables important for the study were included.
Statistical analysis
Statistical analysis was performed using STATA v16.0 software. For
descriptive analysis, qualitative variables were summarized in percentages, while quantitative variables
were presented as mean and standard deviation. In the bivariate analysis, the T-Student test, ANOVA, and
Pearson's test were used.
A generalized linear multivariate model of the Gaussian family was performed based on a linear regression model. The variables included in the multivariate model were age, gender, number of children, and the presence of additional caregivers. These variables were chosen based on a literature review. The measure of association was the prevalence ratio (PR) with a 95% confidence interval (CI). The strength of the association between the main variable and the two predictive formulas with the highest correlation was measured using the R-squared.
Ethical aspects
This study followed the guidelines of the Declaration of Helsinki,
maintaining the anonymity of any data that could reveal the identity of the patient's family member;
therefore, the medical record number was used for identification in the data. This project was evaluated
by the ethics committee of the Universidad Ricardo Palma for review, correction, and execution. All
participants signed the informed consent form.
RESULTS
A total of 103 parents were included in the study. The median age was 39 years; there was a predominance of females (70.59%), the majority had 2 or more children (59.80%), and only 21.57% had additional caregivers. The medium level of stress was 88.24%, and the high level was 4.9%. The mean stress level was 95, and the mean COPE test score was 129.59 (Table 1).
| Characteristics | n (%) |
|---|---|
| Age | 39 (9.41)* |
| Sex | |
| Male | 30 (29.41) |
| Female | 73 (70.59) |
| Number of children | |
| < 2 | 41 (40.20) |
| > or = 2 | 62 (59.80) |
| Has additional caregivers | |
| No | 80 (78.43) |
| Yes | 23 (21.57) |
| Categorized stress level | |
| Low | 8 (6.86) |
| Medium | 90 (88.24) |
| High | 5 (4.90) |
| Stress level | 95 (28.30)* |
| COPE test | 129.59 (26.44)* |
*Mean (standard deviation)
Source: Ownelaboration
The means of the COPE strategies are described. In Strategy A, the strategy with the highest mean was planning (10.91). In Strategy B, the strategy with the highest mean was positive reinterpretation and growth (11.22). In Strategy C, the strategy with the highest mean was mental disengagement (7.53) (Table 2).
| Strategies | Mean (standard deviation) |
|---|---|
| Strategy A | |
| Planning | 10.81 (2.64) |
| Active coping | 9.67 (2.04) |
| Suppression of competing activities | 9.63 (2.31) |
| Restraint | 8.71 (4.41) |
| Strategy B | |
| Positive reinterpretation and growth | 11.22 (2.27) |
| Turning to religion | 10.83 (8.33) |
| Use of instrumental social support | 10.68 (2.56) |
| Acceptance | 10.16 (2.44) |
| Use of emotional social support | 9.65 (3.02) |
| Focus and venting of emotions | 8.36 (2.39) |
| Humor | 7 (2.78) |
| Denial | 6.44 (2.29) |
| Strategy C | |
| Mental disengagement | 7.53 (2.12) |
| Behavioral disengagement | 6.74 (2.18) |
| Substance use | 4.63 (2.51) |
Source: Own elaboration
It was observed that those who had a planning strategy had a mean stress level of 8.8; those who had a positive reinterpretation and growth strategy had a mean stress level of 10.2; and those who had a mental disengagement strategy had a mean stress level of 6.4. No statistically significant association was found (Table 3).
| Strategies | Mean (standard deviation) | P | ||
|---|---|---|---|---|
| Low | Medium | High | ||
| Planning | 13.28 (2.058) | 10.73 (2.59) | 8.8 (2.39) | 0.774* |
| Positive reinterpretation and growth | 13.57 (1.81) | 11.1 (2.23) | 10.2 (1.30) | 0.387* |
| Mental disengagement | 6.28 (1.79) | 7.68 (2.13) | 6.4 (1.51) | 0.629* |
* Performed with ANOVA test, significance level p< 0.05
Source: Own elaboration
It was observed that those with a high stress level had a higher mean COPE test score of 85.23 points compared to those with a low stress level. Parents with a medium stress level had a higher mean COPE test score of 53.10 points compared to those with a low stress level. With the exception of sex, number of children, and having additional caregivers, the rest of the results presented statistically significant associations (Table 4).
| Characteristics | COPE Test | P |
|---|---|---|
| Sex | 0.1986** | |
| Male | 124.367 (4.35)* | |
| Female | 131.77 (3.22)* | |
| Number of children | 0.7136** | |
| < 2 | 128.46 (3.64)* | |
| > or = 2 | 130.36 (3.65)* | |
| Has additional caregivers | 0.0886** | |
| No | 127.44 (3.03)* | |
| Yes | 137.45 (4.87)* | |
| Categorized stress level | 0.023*** | |
| Low | 78.57 (11.13) | |
| Medium | 131.67 (22.52) | |
| High | 163.8 (8.35) |
* Mean (standard deviation)
** Performed with T-test, significance level p < 0.05
*** Performed with ANOVA test, significance level p < 0.05
Source: Own elaboration
There is a positive correlation between stress level and the COPE Test in a sample of parents. In Figure 1, we see the linearity of the stress level values (green line) and the COPE Test values (red line), as well as the blue scatter points.
Figure 1: Correlation between stress level and COPE Test
The correlation was statistically significant between the stress level and the COPE Test. The stress level had a strong positive monotonic correlation of 0.86 (Table 5).
| Encuesta | Test COPE | p |
|---|---|---|
| Nivel de estrés | 0.8604 | <0.001* |
* Significance level p < 0.05
Source: Own elaboration
For the first analysis, in the simple regression, it was found that, among parents, the average stress level increases by 0.80 (95% CI: 0.710-0.896; p<0.001) for each point increase in the COPE Test. In the multiple regression, the observed association in terms of direction and magnitude was maintained. It was observed that the average stress level increases by 0.81 (95% CI: 0.718-0.909; p<0.001) for each point increase in the COPE Test. This was adjusted for the confounding covariates of age, sex, number of children, and having additional caregivers. Additionally, the strength of the association between stress level and the COPE Test was 0.7402 (Table 6).
| Characteristics | Crude Analysis | Adjusted Analysis* | |||||
|---|---|---|---|---|---|---|---|
| Coef β | 95% CI | p** | R2 | Coef β | 95% CI | p** | |
| Stress level | 0.803 | 0.710-0.896 | <0.001 | 0.7402 | 0.814 | 0.718-0.909 | <0.001 |
* Adjusted for age, sex, number of children, and having additional caregivers.
** Significant p-value <0.05
Source: Own elaboration
Our results show that a high level of parental stress was associated with coping with stress as measured by the COPE Test. It was also found that the level of parental stress was significantly and strongly positively correlated with coping with stress. Additionally, the most used strategies were planning, positive reinterpretation and growth, and mental disengagement.
In our study, it was found that the stress level of parents with children with Autism Spectrum Disorder (ASD) was medium-high (93.24%). This was similar to a study conducted on women using social services, where high levels of stress were found (6). Another study conducted on English parents found high levels of stress related to their parenting (7-8). Another study of parents with children with ASD found that 87% of parents experienced stress (9). In our study, using the PSI/SF questionnaire, the stress level of parents had a mean of 95; this was similar to another study that found scores of 90 using the PSI/SF (10). It has been observed that parents with children with ASD experience significant stress and depression, even more than parents with children with intellectual disabilities and cerebral palsy (11-13). Regarding gender, mothers experience more stress in raising a child with ASD compared to fathers (11) and compared to mothers with children with facial paralysis (14). In our study, no gender differences were found. Possible explanations for why parents with children with ASD tend to have higher stress levels could be the children's behavioral problems and emotional deficiencies, the lack of respite caregivers, several children with ASD in the household, social support, frustration with the child's improvement, or satisfaction with life, and the instability typical of children with ASD (14-17).
Because parents with children with ASD experience significant stress, they attempt to manage stress with various coping methods (18). In our study, a strong positive correlation was found between the level of parental stress and coping strategies. A systematic review found that parents' stress levels had a significant positive correlation with positive reappraisal coping (19). Two studies found that parents with children with ASD used maladaptive coping strategies to deal with stress (12,20); it has been seen that having maladaptive coping is associated with higher stress levels (21). Another study conducted on French parents found that they focused more on problem-focused coping methods than emotion-focused methods and sought social assistance and/or other caregivers (22). In our study, no association was found between parents who had other caregivers and coping strategies. Another study found that parents with a higher burden related to their child's care had increased stress (23). Despite using various coping types, parents continue to experience high stress levels. One possible explanation for this could be that parental stress correlates with negative reappraisal coping, which leads to inadequate knowledge of coping strategies (12); additionally, parents use strategies based on their skills, and it has been seen that parents can manage externalizing behaviors but do not have the tools to manage internalizing behaviors (20). Thus, the child's behavior can lead to exhaustion, resulting in inadequate coping strategies and consequently increased stress.
Various coping strategies such as meditation, sports, good nutrition, relaxation, humor, and leisure activities can help reduce the consequences of stress (24). However, coping strategies for dealing with stress differ according to personality, emotional stance, and the individual's interpretation of the situation (25). In our study, the strategies with the highest scores were planning, positive reinterpretation and growth, and mental disengagement. This was similar to other studies where it was found that the main coping strategies used by parents with children with ASD were planning, acceptance, positive reinterpretation and growth, and problem-focused coping strategies (18,22,26). Coping strategies such as mental disengagement, active avoidance, and escape avoidance (maladaptive/inadequate strategies) can occur due to crises in homes with children with ASD (12,20); this is related to a lack of knowledge about coping strategies. A possible explanation could be the fatigue of parents related to insufficient coping techniques (20); it has also been observed that parents prefer mental disengagement due to high levels of stress, depression, and negative moods (23).
Various coping strategies were studied by Cohen, which are based on rational thinking, explaining the positive reinterpretation of stressful situations logically; individual imagination, which would be future planning and the consequences of the current situation (27). Other strategies are pointed out by Higgins and Endler, which relate to orientations that include emotions, avoidance, and the best immediate plan to address the stressful situation (28). Kim and Han mention that increased emotional control and efficiency help adapt and practice effective strategies for coping with stress (29). However, variations in how coping mechanisms are employed by parents with children with ASD make it difficult to highlight only one of them, so it could be indicated that coping strategy should be personalized according to the parents' skills and the child's degree of autism.
Our study has limitations. First, the degree of autism in children was not considered. Second, other psychological problems in parents, such as depression and anxiety, were not evaluated. Third, the educational level and economic level of the parents were not considered. However, these findings could be useful for understanding the panorama of stress coping in Peruvian parents with children with ASD.
It is concluded that there is a correlation between stress level and coping with stress in parents with children with ASD. Furthermore, its relationship with stress coping strategies was identified; the strategies that scored highest in the studied population were planning, positive reinterpretation and growth, and mental disengagement.
In the future, studies should investigate the incidence of stress in deciding stress coping strategies and thus understand this behavior in parents with children with ASD. Therefore, children can have better improvement and understanding from parents; additionally, the quality of life in families with children with ASD would be higher and more positive. The implementation of educational seminar programs and campaigns on this topic for parents with children with ASD should be promoted, providing them with tools for stress coping strategies.
Conflict of interest statement: The authors declare no conflicts of interest.
Funding: Self-funded.
Authorship contribution:
Conceptualization: Lorela La Torre Atusparia, Luis Roldan.
Data Curation: Lorela La Torre Atusparia, Jesús Talavera.
Formal Analysis: Luis Roldan, Jesús Talavera.
Investigation: Lorela La Torre Atusparia, Luis Roldan, Jesús Talavera.
Methodology: Luis Roldan, Manuel Loayza Alarico.
Supervision: Luis Roldan, Manuel Loayza Alarico.
Visualization: Lorela La Torre Atusparia, Jesús Talavera.
Writing – Original Draft: Lorela La Torre Atusparia, Jesús Talavera.
Writing – Review & Editing: Lorela La Torre Atusparia, Jesús Talavera, Luis Roldan, Manuel
Loayza Alarico.
Received: March 12, 2024.
Approved: May 24, 2024.
Corresponding author: Lorela La Torre Atusparia
Email: lorela.latorre@urp.edu.pe
Phone number: +51 987 380 952
Address: 33, Av. Alfredo Benavides 5440, Santiago de Surco 15039
Article published by the Journal of the faculty of Human Medicine of the Ricardo Palma University. It is an open access article, distributed under the terms of the Creatvie Commons license: Creative Commons Attribution 4.0 International, CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/), that allows non-commercial use, distribution and reproduction in any medium, provided that the original work is duly cited. For commercial use, please contact revista.medicina@urp.edu.pe.
