Stress among mothers of children with Autism Spectrum Disorder in comparison to children with & without special health care needs

1 Introduction

Parenting is the process of understanding the physical, emotional, psychosocial, and intellectual development of a child from infancy to adulthood, and not just the biological relationship between parent and child [1]. Each parent, irrespective of their child’s characteristics, socioeconomic status, or other experiences, has parenting stress to some extent [2]. Parenting stress is defined as “a set of processes leading to aversive physiological and psychological reactions arising while parents attempt to adapt to the demands of parenthood.” This definition suggests that parenting stress involves parent and child factors, which invariably affect the parent-child relationship [2]. By definition, these feelings arise directly from the parenting role. This definition suggests that parenting stress involves parent factors as well as child factors. Looking at this, parent-child relationships can also be invariably affected by parenting stress.

Development is an essential aspect of childhood that harbingers the future of an individual. A developmental disorder affects both the child and the family. The stress of rearing a child with a developmental disorder can create a difficult home environment with stressful parent-child relationships. In the United States of America (USA), the prevalence of Autism Spectrum Disorder (ASD) has increased from 1 in 68 to 1 in 54 children in the last two decades [3]. The prevalence of ASD is reported to be as high as 1 in 65 in India [4]. The essential features of Autism Spectrum Disorder (ASD) are persistent impairment in reciprocal social communication and interaction and restricted, repetitive patterns of behavior or interests [5]. Maladaptive behavior like temper tantrums, aggression, and self-injurious behavior are often present in children with ASD. Sensory issues and self-adaptive skills (an ability that makes a child live independently) make routine care difficult to handle, along with the core deficits of ASD [6]. These maladaptive behavior, sensory issues, and self-adaptive skills, along with the core deficits of ASD, are some of the reasons for parental stress in families raising a child with ASD [6]. Also, unclear prognosis, maladaptive behavior, and low self-adaptive skills in the child add to the stress [7]. Parents of children suffering from chronic illnesses have varying levels of stress at the time of diagnosis, during the transition, during acute exacerbations of the illness, and during repeated hospitalizations [8, 9].

Studying distress among parents of children with ASD and other developmental disorders is vital. It is crucial to keep parents’ mental health in good shape for good care of children. An in-depth study of the same can give an insight into the factors responsible for the stress these parents experience. Once the reasons are identified, the issues can then be addressed as they can be medical, social, psychological, or personal. This area is underexplored in countries like India [10, 11]. In India, society still stigmatizes these disabilities. There is also no structured or designed referral system or recommendations, along with a lack of trained professionals in the field of developmental and behavioral pediatrics. The lack of insurance coverage for these interventions overwhelms many parents. Attempts to integrate and create an inclusive environment for their children are quite challenging in India [10]. Moreover, it is not very clear how the stress of a parent of a child with ASD stands in comparison to those with special health care needs like developmental delays, other neurological disabilities, and children with chronic illness. These comparisons can help understand the challenges parents go through. Studies are performed on parental stress in children with ASD in developed countries. However, the data from Lower Middle-Income Countries (LMIC), like India, is very limited. Considering the cultural differences and experiences, it needs to be explored.

Thus, the objectives of this study were; (1) To measure and compare the stress among mothers of children with (a) ASD, (b) Special health care needs (SHCN), including developmental, emotional, or behavioral problems other than ASD (children with other developmental problems), (c) SHCN without developmental problems and (d) Typically developing children without SHCN; (2) To assess the factors associated with maternal stress in children with developmental disorders in India.

2 Methods

A cross-sectional study was conducted from April 2018 to October 2018 at the Child Development and Guidance Clinic division of a tertiary care pediatric unit on parents of children from the age of 2–12 years. The project was approved by the Institutional Ethical Committee. Written informed consent was obtained from the mothers. Those having pre-existing mental health or other chronic illnesses were excluded to remove the confounding bias of over-reporting. Only those mothers who were able to read, understand, and write were included in the study (as shown in Fig. 1)

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Fig. 1

Case selection and enrolment in the study.

3 Results

A total of 200 children and their mothers (126 boys and 74 girls) were enrolled and analyzed in the study, 50 in each group. The mean age of the study population was 5.4±2.1 yrs. The basic demographic data of all four groups are shown in Table 1. There was no statistical difference observed in any of the groups because of any of the demographic or socio-cultural data.

On ANOVA analysis, the PSS score was significantly different between the groups (p = 0.0001). Post-hoc analysis revealed that the ASD group had a higher stress score as compared to other groups (p = 0.0001) except for the Developmental delay without the ASD group (p = 0.203). The Developmental delay without ASD group had higher stress scores as compared to the SHCN without developmental delay group (p = 0.004) & the Typically developing group (p = 0.0001). The SHCN without developmental delay group had higher stress scores than the Typically developing group (p = 0.0001) (Fig. 2).

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Fig. 2

Comparative mean PSS, rewarding and challenging scores in different groups with its significance; (^*p < 0.001 when comparing all the groups individually with SHCN without developmental delay group, ^#p < 0.001 when comparing all the groups individually with Typically developing group).

The mean challenging scores were in the following order: ASD group > Developmental delay without ASD group > SHCN without developmental delay group > Typically developing group. In the ASD group and Developmental delay without ASD group, mothers reported majorly increased stress due to: worry whether doing enough for the child; caring for the child takes more time and energy; being overwhelmed by the responsibility of being a parent. In SHCN without developmental delay group, concern about financial burden was higher. The challenging scores of different items observed in the four groups were statistically different from one another (Table 2). The mean rewarding scores were in the following order: ASD group<Developmental delay without ASD group<SHCN without developmental delay group<Typically developing group. The majority of the mothers affirmatively reported doing everything for the child; closeness with the child; enjoying spending time with the child, and the child being an important source of affection. The scoring observed in all these questions from the four groups was not statistically different from each other (Table 2).

There was a moderate positive correlation observed in the rewarding and challenging scores of PSS of the ASD group (R = 0.473, p = 0.008). This implies that if the rewarding score was low, there is a high likelihood of challenging scores also being low (please note that the rewarding questions are to be scored in a reversed way, so the mothers who are having a more challenging theme of motherhood about their children are having a less rewarding theme of motherhood towards them). Similar correlations were found in the developmental delay without ASD group (R = 0.411, p = 0.024) and the SHCN without developmental delay group (R = 0.421, p = 0.026), but not in the Typically developing group (R = 0.249, p = 0.185) (Table 3).

Among the ASD group, behavioral issues were observed in 42 (84%) children, whereas 8 (16%) had no behavioral issues. Maternal stress in children with ASD group was higher in those with behavioral issues as compared to those who did not have behavioral issues (p = 0.039). In the ASD group, mothers whose children were on regular interventions had a lower PSS score as compared to those who were not on regular interventions (p = 0.012) (Fig. 3a and 3b). There was no difference observed in the PSS in the ASD group for inadequate social maturity of child (VSMS score < = 70), delayed speech, presence of co-morbidities along with ASD, and different duration of illness in the children (p = 0.343).

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Fig. 3

(a) Maternal Stress in children with ASD for behavioral issues in children (^*p < 0.05). (b) Maternal Stress in children with ASD for regularity of interventions (^*p < 0.05).

Among children with other developmental disorders with SHCN, no statistical differences were observed in PSS on the grounds of maladaptive behavior in the child (p = 0.664) or inadequate VSMS score < = 70 (p = 0.202).

The results show higher stress among mothers of children with SHCN as compared to other children without SHCN. Among all four groups, the ASD group reported higher stress. This higher maternal stress among the ASD group was associated with behavioral issues and irregular interventions among children. The strength of this study is the focus on the rewarding aspect of the mother-child relationship helping in making a ‘family-centered approach’ for interventions. The study of rewarding and challenging aspects of the mother-child relationship, maternal stress, and stressors was attempted. Further, four different groups- three groups belong to a variety of disorders reflecting maternal stress in different situations, and a typically developing children group serves as a control in the Indian setting were studied. The need to conduct such studies in India, where disability is neglected by society and mothers are overwhelmed without essential support systems was already highlighted. The limitations are a modest sample size, though four broad groups were attempted to be covered. Parental stress of only mothers was reported in the study, considering them as the primary caretaker of the child in India. Parenting styles, resilience, and more details on parents could have been obtained. This observation is from a single center. Similar reports from other Indian centers might help to support these observations.

The mean PSS in another study using the same tool [11], where the parents of children with ASD, Specific Learning disabilities, and children without any psychiatric disorder were analyzed, had scores similar to those in this study. The mean score was significantly higher in parents of children with ASD than in the other two groups. Similar observations were also made from studies worldwide [11, 21]. It is reported that parents of children with Autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than ASD (44%), followed by those with SHCN without developmental problems (12%), and least by parents of children without SHCN (11%) [22]. The reasons for higher stress observed in the ASD group are possibly due to unique challenges related to the characteristics of such children as compared to other developmental disabilities. ASD, which is considered an invisible disability without any physical impairment, leads to significant distress in families [7]. Higher levels of distress are reported in the presence of problem behaviors and impaired adaptive functioning-commonly observed in other developmental disabilities but are observed at a higher degree in children with ASDs [7]. Maternal stress in Developmental delay without ASD group may be due to maladaptive behavior, lower self-care and adaptive skills, emotional disturbances in children, and the need for specialized care [23].

The rewarding aspects reveal the pleasant and rewarding experience felt by the mother, which was seen in 90% of mothers in the ASD group. From the observations, it seems that despite substantial stress, mothers do report a rewarding perception of their relationship with their children. These findings are consistent with previous observations [24, 25]. This aspect of parenthood can help guide coping strategies and offer support to the parents. However, mothers in the ASD group were less optimistic about the future and their role and less satisfied as parents, which have been previously reported [24, 26]. Mothers in India are not only the primary caregivers for their children but also the entire family and household chores. Due to such overwhelming responsibilities, they are probably affected a lot.

In the ASD group and the Developmental delay without ASD group, mothers reported higher stress mainly due to: worry about doing enough for the child; caring for the child requiring more time and energy; responsibility of parenthood. These findings are in line with the previously reported studies [22, 26]. However, in the SHCN without developmental delay group, the concern of financial burden was higher, and, with an uncertainty of the illness course, concerns about the prognosis or complications related to illness were sources of maternal stress [8, 9]. This may be due to the lack of insurance coverage for the above illnesses. The positive correlation between rewarding and challenging PSS scores may be due to strong negative emotions interfering with the motivational aspects of parenting and the cognitive appraisal of caregivers. Hence, mothers perceive their children less positively or suppress their positive emotions towards them [27].

In the ASD group, the mean PSS observed among those having behavioral issues was significantly higher than children without them. It has been suggested that maternal stress increases with behavioral issues in children with ASD [20, 21]. Also, it is reported that a child’s behavior is the most important predictor of parental stress [7]. The vicious cycle of a child’s behavior leads to parental stress, and the inappropriate reactions of parents reinforce the development and persistence of behavior problems, which in turn elevates parental stress [28]. Mean PSS in the ASD group with irregular interventions was higher. This may be due to the lack of availability or not seeking professional support, either formal (interventions by therapists and professionals) or informal (social or family support), leading to elevated parental stress and affecting the overall child’s functioning [29]. There was no difference reported in PSS with inadequate social maturity of the child, delayed speech, presence of co-morbidities along with ASD, and different duration of illness in the children, which is consistent with the previously reported findings [30, 31].

No differences were observed in stress among mothers in the Developmental delay without ASD group with the presence of maladaptive behavior or inadequate adaptive skills of a child. There is conflicting evidence on whether a child’s poor adaptive skills lead to increased parental stress [30, 32]. The findings of the study could be attributed to the fact that the majority of children with developmental delay who did not have ASD were receiving regular interventions and cognitive evaluations from their caregivers. The children fulfilling CSHCN criteria (condition lasting for at least 12 months) were only included in the group, so it will be difficult to comment on parental stress due to maladaptive behavior at the time of diagnosis.

5 Conclusion

Mothers of children with a developmental or behavioral disorder, ASD in particular, perceive higher stress as compared to mothers of children without the developmental disorder. The combination of maladaptive behavior in the child and irregularity in follow-up for evidence-based interventions contributes to elevated stress in mothers of children with ASD. Despite substantial stress in mothers of children with ASD, they report a rewarding mother-child relationship. Evaluation of stress and stressors in mothers of children with developmental disorders is vital. Steps towards improving maternal stress could also enhance their capacity to provide adequate care for their children and might lead to better outcomes for the whole family. The study is very crucial for LMIC like India due to certain reasons. In India, the priority is given to acute illnesses over chronic neurodevelopmental disorders. A heterogeneous population of doctors serves these children, therefore lacking proficiency to cater to their special needs. Also, the lack of insurance coverage for families with children with neurodevelopmental disorders and limited awareness among parents and society are hurdles in executing the optimum standard of care for developmental disorders. There is unmet need to give optimum care to families with SHCN in India. It may be provided through a multidisciplinary standard of care in management and reinforcing parental support.