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MEDIATING ROLE OF ACCEPTANCE ON PARENTAL STRESS AND COPING AMONG PARENTS HAVING CHILDREN WITH AUTISM SPECTRUM DISORDER

MEDIATING ROLE OF ACCEPTANCE ON PARENTAL STRESS AND
COPING AMONG PARENTS HAVING CHILDREN WITH AUTISM
SPECTRUM DISORDER

Kalaivani. P1 & Laxmi Narayan Rathore2

1PhD Scholar & 2Associate Professor, Department of Clinical psychology, School of Medical &
Paramedical Sciences, Mizoram University, Aizawl, Mizoram, India

Correspondence: Laxmi Narayan Rathore, E-mail: laxminarayan21@rediffmail.com

ABSTRACT

Background: Autism Spectrum Disorder (ASD) is a lifelong heterogeneous neurodevelopmental condition which includes social and communication impairments and restricted stereotypical patterns of behavior and interests. This is considered as chronic condition and it requires multiple therapy procedures and Rehabilitation for improvement of the condition. Parental acceptance of children with disability is very significant as it effects the perception of the problem, and the way they adopt coping strategies to deal effectively with the problem of the child. Parents especially of children with ASD undergo lot of stress as it is a chronic condition associated with poor adaptive skills and behavioural problems which makes them feel more stressed.Objectives: To study the level of distress and coping strategies among parents of children with Autism Spectrum Disorder. Methods: Sampling method included purposive sampling. About 50 parents aged between 25 years to 50 years old, who is the primary care giver of children with Autism Spectrum Disorder, attending OP services from NIEPMD, Chennai were included in the study. Parents who are single and having any other chronic physical or mental illness were excluded from the study. The participants were approached individually and after obtaining informed consent, General Health Questionnaire (GHQ-12), Parental Acceptance Questionnaire (PAR-Q), and Coping Health Inventory for parents (CHIP) were administered. The data obtained were statistically analyzed to assess the level of distress of parents with disability, different coping strategies they adopt, and mediating effect of Acceptance on relationship between coping strategies and stress. Results: The results showed that the majority of the parents are found to have psychological distress and the rejection level was found to be mildly high than the acceptance level of the parents. There is negative relationship between coping strategies and level of distress among these parents having children with ASD. Further, it was also found that level of acceptance plays a significant mediating role and it affects the relationship between coping strategies and level of distress among the parents. Conclusion: The study highlighted the importance of identifying mental health issues among parents having children with ASD and it also signifies the importance of adopting strategies to enhance the Acceptance level and coping strategies while delivering intervention programs for parents having children with ASD.

Keywords: Autism Spectrum Disorder, Psychological distress, and Parental acceptance.

INTRODUCTION

Parents having child with disability undergo lot of stressors due to multiple challenges while rearing the child like facing stigma from the society, long term therapy procedures, and difficulty in accessibility of services. While the Parental stress among parents having children with disability has been well established, the stress among Parents having children with Autism Spectrum Disorder (ASD) has been more when compared to than those of with typical children and other disability. It has been reported that Parents of children with ASD have more stress compared to those with typical children and also than having children with Down Syndrome (A. dwska & E. Pisula., 2010, L. Abbeduto et al.., 2004). Parents of children with Autism face many challenges as Autism remains undiagnosed late or until preschool years (Beauchesne & Kelley, 2004) and due to the associated symptoms such as impairment in social communication skills and restricted or repetitive behaviors (Gabriels, R. L.,2005). In a very recent study done by Dijkstra-de Neijs, L (2024), he has reported that Parents of children with ASD have more psychological distress and poor quality of life. Although there is no proven cure for autism, the treatment of Autism includes long term multiple therapy procedures to improve the overall functional status of the child by promoting development of communication, social, adaptive, behavioral, and academic skills as well as lessening maladaptive and repetitive behaviors. Troster H. and Lange S. (2019) have described the various demands of parents having children with ASD such as cooperating with the partner, strengthening parent child relationship, difficulty in maintaining social life, facing stigmatizing social reactions, managing problem behavior of the child, and fulfilling one’s own need. Due to multiple challenges, they are prone to develop psychological disorders such as depression and anxiety (Al-Farsi, O. A 2016., Cai, R. Y., 2020). In a review of study done by Bailey et al., (2007) on mothers of children with disability, higher ratings of depressive symptoms were attributed to children with autism or behavioral problems. Although the stress is overwhelming, it is not likely that all parents were not able to handle the stress, some of them were able to cope up well the situation in a positive optimal way. It depends upon the individual and the coping strategies they adopt to deal with the situation. Coping involves specific coping strategies and psychological resources to manage a stressful event or situation. It depends upon the wide variety of factors such as perception and interpretation of the event, individual personality characteristics, financial status, education etc. The other factors such as marital relationship and social support also determines the adjustment of mother having individuals with disability (Emerson, 2003 & Fazil, Wallace & Singh, 2004). It is reported in a study that social support was associated with better coping strategy such as mobilizing family to acquire social support (Vassiliki Ntre., et al., 2021) Coping strategies to deal with the situation can be active and passive. Active coping strategies is more action oriented such as approaching the problem and resolution while passive coping strategies were such as avoiding the problem, can be a mechanism to reduce stress on short term. Many studies have revealed the relationship between coping strategies and stress among parents with disability. Problem focused coping has been associated with more positive well-being including relationship adjustment with one’s partner (Stoneman & Gavidia-Payne 2006), whereas avoidant coping strategies have been associated with psychological distress (Hastings et al., 2005). According to the systematic review by Vernhet and colleagues (2019), parents of children with ASD use less support and are more likely to

OBJECTIVES

Hence, this current study aimed to study the level of distress and level of acceptance and rejection among Parents of children with Autism Spectrum Disorder. The study also intended to study the mediating effect of Acceptance on relationship between coping strategies and level of distress.

HYPOTHESES

1. There will be significant level of distress among Parents of Children with ASD
2. There will be high level of Rejection compared to level of Acceptance among the Parents towards their children with Autism
3. There will be significant relationship between different types of coping strategies and the level of distress among the parents
4. The level of Acceptance and Rejection will mediate the relationship between Coping strategies and level of distress among Parents of Children with ASD.

METHODOLOGY

The present study included parents, both male and female aged between 25 years to 60 years old, who is the primary care giver of children with ASD, attending OP services from NIEPMD, Chennai. Parents of children with any comorbid disability other than intellectual disability and parents having more than one child with disability were excluded from the study. Parents having history of any other chronic mental illness or physical illness were also excluded from the study. After getting ethical clearance from the institution, the participants were approached individually and after obtaining informed consent, General Health Questionnaire (GHQ-12), Parental Acceptance Questionnaire (PAR-Q), and Coping Health Inventory for parents (CHIP) were administered. The data obtained were statistically analyzed to assess the level of distress of parents with disability, different coping strategies they adopt, and mediating effect of Acceptance on relationship between coping strategies and stress.

STATISTICAL ANALYSIS & STUDY DESIGN

Data was analysed using Statistical Package for Social Sciences (SPSS 20). Descriptive statistics was done to find the frequency percentage of level of distress and level of Acceptance. Pearson Correlation was used to find the relationship between coping strategies and psychological distress. The mediation analysis was done to assess the mediating effect of Acceptance on the relationship between coping and psychological distress.

RESULTS

DISCUSSION

The results have revealed that there is significant level of distress among parents of Children with ASD which is in line with the previous literature that Parents of children with ASD have more distress due to reasons such as difficulty especially in handling the behaviour pattern of the child which has been reported in a recent study done by Miranda, A., Mira., et al., (2019) and deficits in social and communication domain. In a study done by Omar Al-Farsi (2016), caregivers of children with Autism have high levels of stress, anxiety, and depression compared to parents with intellectual disability and typically developing children. It also has been reported in a study done by Ciara Padden ( 2017) that Parents of children with ASD not only experience higher level of stress but also poorer health than parents of typically developing children. In a very recent study done by Taleha Shahbaz et al., (2023), stress level of 144 parents of children with ASD were assessed and it reported that especially Mothers experienced higher level of stress and it correlated with symptoms of autism. The current study also revealed similar findings in line with the previous findings that majority of them had higher level of psychological distress. Even though, the person experience stress, the way an individual cope is significantly important for the person to overcome the stress and maintain their wellbeing. Hence, as the study intended to study the coping mechanism adopted by the parents, CHIP inventory was used to study the coping mechanisms of parents having children with ASD as the condition of Autism is considered as a chronic condition. In this study, most of the Parents had better coping mechanism which might be due to the reason that most of them included in our study were literates and belongs to middle socio-economic status. They are also aware of the condition of the child since they are seeking services already for their children and hence these factors might have amplified the coping mechanism in a better way in the current study. The current study showed that relationship between different coping domains such as family integration (r = -.546), social support (r = -.572), and understanding the medical situation (r = -.s508) have significant negative correlation with psychological distress (Joseph Awwad Bawalsah 2016; Ana Miranda et al., (2019). In a study done by Sharabi, A., and Marom-Golan, D. (2018), it was reported that different sources of informal social support from the family, friends, and partner reduce stress, foster engagement, and mediate and moderate wellbeing. This finding well corroborates with finding of the current study which revealed that social support and family integration was negatively correlated with distress level of the parents. The findings corroborated with the study done by Joseph Awwad Bawalsah (2016) in which he concluded significant and positive correlation between levels of stress and coping strategies. Our study also have found that the acceptance level mediates the relationship between coping strategies and stress. The similar findings were highlighted in other similar previous studies. In a study done by Lloyd, T., & Hastings, R. P. (2008), acceptance was negatively associated with maternal anxiety, depression and stress such that mothers who were generally more accepting reported fewer psychological adjustment problem. In a study done by Elaine E. MacDonald et al., (2009), his findings have revealed that Acceptance level mediates the impact of behavioural problems on parental stress, anxiety, and depression and it also serves as positive predictor of parent’s perceptions associated with raising their child with disability. This finding clearly proves the effect of parental acceptance on mental wellbeing of the parents. In another study done by Heiman T. (2002), he conducted interview with the parents and majority of them have expressed the need for optimistic outlook, realistic view and acceptance of the disability. These findings highlighted the importance of knowing the parent’s insight and acceptance level towards their child which would help us to implement intervention programs to improve the parent’s attunement towards their child’s condition which indeed will also help to maintain their mental well being.

CONCLUSION

The study have concluded that Parents of Children with ASD have significant level of distress which had significant negative relationship with coping strategies they adopt. The study also highlighted the significance of Acceptance level of the parents towards their children with ASD that mediated the relationship between coping strategy and distress. This study gave the understanding that while planning interventions for the children, the focus should also be aimed to improve the mental well being of the parents, decrease their stress by using appropriate strategies and also to improve the level of acceptance. The factors such as increasing their social support and family integration, and making them to understand the condition of the child would serve a lot in the programs of rehabilitation and intervention.

REFERENCES

Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile X syndrome. American journal on mental retardation, 109(3), 237-254. Al-Farsi, O. A., Al-Farsi, Y. M., Al-Sharbati, M. M., & Al-Adawi, S. (2016). Stress, anxiety, and depression among parents of children with autism spectrum disorder in Oman: a case– control study. Neuropsychiatric disease and treatment, 1943-1951. Beauchesne, M. A., Kelley, B. R., & MeInyk, B. M. (2004). Evidence to support parental concerns as an early indicator of autism in children. Pediatric nursing, 30(1), 57. Bailey Jr, D. B., Golden, R. N., Roberts, J., & Ford, A. (2007). Maternal depression and developmental disability: Research critique. Mental retardation and developmental disabilities research reviews, 13(4), 321-329. Bawalsah, J. A. (2016). Stress and coping strategies in parents of children with physical, mental, and hearing disabilities in Jordan. International Journal of Education, 8(1), 1-22. Cai, R. Y., Uljareviæ, M., & Leekam, S. R. (2020). Predicting mental health and psychological wellbeing in mothers of children with autism spectrum disorder: Roles of intolerance of uncertainty and coping. Autism Research, 13(10), 1797-1801 Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre school children with autism and Down syndrome. Journal of intellectual disability research, 54(3), 266-280. Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self assessed social and psychological impact of the child’s difficulties. Journal of intellectual disability Research, 47(4 5), 385-399 Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375– 387. Fazil, Q., Wallace, L. M., Singh, G., Ali, Z., & Bywaters, P. (2004). Empowerment and advocacy: reflections on action research with Bangladeshi and Pakistani families who have children with severe disabilities. Health & social care in the community, 12(5), 389-397 Gabriels, R. L., Cuccaro, M. L., Hill, D. E., Ivers, B. J., & Goldson, E. (2005). Repetitive behaviors in autism: Relationships with associated clinical features. Research in developmental disabilities, 26(2), 169-181.. Griffith, G. M., Hastings, R. P., Nash, S., & Hill, C. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism. Journal of Autism and Developmental Disorders, 40, 610–619 Heiman T. (2002) Parents of children with disabilities: resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14, 159–171 Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and schoolage children with autism. Autism, 9(4), 377-391. Lloyd, T., & Hastings, R. P. (2008). Psychological variables as correlates of adjustment in mothers of children with intellectual disabilities: cross sectional and longitudinal relationships. Journal of Intellectual Disability Research, 52(1), 37-48. MacDonald, E. E., Hastings, R. P., & Fitzsimons, E. (2010). Psychological acceptance mediates the impact of the behaviour problems of children with intellectual disability on fathers’ psychological adjustment. Journal of Applied Research in Intellectual Disabilities, 23(1), 27-37. Miranda, A., Mira, A., Berenguer, C., Rosello, B., & Baixauli, I. (2019). Parenting stress in mothers of children with autism without intellectual disability. Mediation of behavioral problems and coping strategies. Frontiers in psychology, 10, 464. Ntre, V., Papanikolaou, Ê., Amanaki, E., Triantafyllou, K., Tzavara, C., & Kolaitis, G. (2022). Coping Strategies in mothers of children with autism spectrum disorder and their relation to maternal stress and depression. Psychiatriki, 33(3), 210e8. Padden, C., & James, J. E. (2017). Stress among parents of children with and without autism spectrum disorder: a comparison involving physiological indicators and parent selfreports. Journal of developmental and Physical disabilities, 29(4), 567-586. Stoneman, Z., & Gavidia-Payne, S. (2006). Marital adjustment in families of young children with disabilities: Associations with daily hassles and problemfocused coping. American Journal on mental retardation, 111(1), 1-14. Sharabi, A., & Marom-Golan, D. (2018). Social support, education levels, and parents’ involvement: A comparison between mothers and fathers of young children with autism spectrum disorder. Topics in Early Childhood Special Education, 38(1), 54-64. Shahbaz, T., Khalid, S., Ali, A., & Yaqoob, S. (2023). Parenting Stress Among Parents of Children with Autism Spectrum Disorder. Journal of Health and Rehabilitation Research, 3(2), 724-729. Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American association of nurse practitioners, 19(5), 251-260. Tröster, H., & Lange, S. (2019). Eltern von Kindern mit Autismus-SpektrumStörungen. Springer Fachmedien Wiesbaden. Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Gélie, F., Miot, S., Roeyers, H., & Baghdadli, A. (2019). Coping strategies of parents of children with autism spectrum disorder: A systematic review. European child & adolescent psychiatry, 28, 747-758. Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261- 274. Wang, J., Hu, Y., Wang, Y., Qin, X., Xia, W., Sun, C., … & Wang, J. (2013). Parenting stress in Chinese mothers of children with autism spectrum disorders. Social psychiatry and psychiatric epidemiology, 48, 575- 582. Wolstencroft, J., Srinivasan, R., Hall, J., van den Bree, M. B., Owen, M. J., IMAGINE Consortium, … & Skuse, D. (2023). Mental health impact of autism on families of children with intellectual and developmental disabilities of genetic origin. JCPP advances, 3(1), e12128.

Conflict of interest: None
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