Our community-based birth cohort study did not find statistically significant difference between the maternal level of childcare pressure among the ASD, DD and controls. Pathway analysis showed the diagnosis of children did not have a direct association with parental health QOL, instead an indirect influence was found. Mothers of children diagnosed with ASD perceived more family support, and those who perceived more family support had better health QOL. On the other hand, mothers of children diagnosed with DD perceived higher childcare pressure, and mothers who perceived higher childcare pressure had worse health QOL. In the demographics aspect, higher maternal level of education was associated with lower maternal QOL, but had a lower risk of DD or ASD diagnosis. Paternal health QOL was only associated with maternal QOL.
Our community-based pathway model found children of mothers diagnosed with ASD perceived more family support, and higher family support was associated with better health QOL. In addition, mothers of children diagnosed with DD perceived more childcare pressure compared to those not diagnosed with DD, but mothers of children diagnosed with ASD did not perceive higher childcare pressure compared to mothers of children without ASD diagnosis. This results differ from previous research which have generally found that caring for a child with ASD is associated with greater parenting stress, compared to families of a child with typical development and other disabilities [29]. We hypothesize that this difference is due to differences in previous studies were of clinical self-referred samples and cultural context. Previous parental stress research was selected from clinical samples, meaning those who experience more stress about their children’s behavior problems, and it’s the level of stress which motivates them to seek treatment for their child [10]. Studies have shown that children’s behavior problem contribute more to parental stress than their children’s cognitive delay [30, 31], thus it is understandable parents from clinical sample would report higher stress compared to those in the community.
In the cultural aspect, Chinese culture is characterized by collectivism, emphasize relational interdependence and the close links among individuals, and the mode of relying on family and in-group. The advantage of interdependence is being able to benefit from a rich network of family, friends, and community [32], which supports our results of mothers of children diagnosed with ASD perceiving more family support. A study in Kuwait also found mothers of children diagnosed with ASD reported an association between the ability to enjoy life and receiving support from the family [33]. However, the disadvantage of vertical collectivism is the emphasis of obedience to authorities, therefore subordinating one's own goals to those of the in-group, and restricting the pursuit of individual happiness [34, 35], and placing greater importance on family priorities than on individual needs [36]. As a result, stigma experienced by family members as a consequence of being associated with a stigmatized relative [16] is of greater concern for parents in the Chinese culture compared to those in other cultures. A study in Vietnam also showed parents of children with cognitive delays perceived higher parenting stress when they experience higher level of stigma [37]. Tremendous effort has been placed in increasing the public health awareness of ASD in Taiwan, including public campaigns, parliament advocate for awareness, establishment of ASD parent groups, the growth in public knowledge of ASD decreases stigma toward the diagnosis [38]. On the other hand, DD being a more generalized diagnosis, is not discussed as much and does not receive as much public attention, thus higher pressure maybe perceived by parents of children with DD. With the increased public awareness on ASD, family support for ASD increases, however, mothers still experience pressure on childcare when their children are diagnosed with DD. The differences in mother's experience when their children are diagnosed with DD and ASD can only be found in pathway analysis, thus showing the importance of SEM.
Factors that affected maternal QOL included the following: mothers who perceived more family support were associated with better overall QOL, and mothers who perceived greater childcare pressure or were more highly educated were associated with lower health QOL. From the perspective of women’s multiple social roles, family support and work both have an important influence on a mother’s role as a parent [14, 39]. Social support has a buffering effect on both the mental and physical health of women, lowering their risk of depression and mortality, and giving them a greater likelihood of recovery from clinical illness [40]. Mothers of children with ASD have reported support from friends, family, and especially spouses as being important to help them cope emotionally [41].
Maternal level of education affected QOL, as well as children’s risk for DD and ASD, as measured using TBCS-DI and M-CHAT. Children of mothers who were higher educated were associated with lower risk of DD or ASD. This is consistent with previous studies showing that children of mothers with higher education had better development [17, 18]. Lung and colleagues further investigated the interactive effect of maternal level of education and location of residence with ASD diagnosis [18]. Children of mothers with higher than average level of education, and who lived in the city had a 2.37 times higher chance of being diagnosed with ASD, compared to children of mothers with a lower than average level of education and who loved in a rural area. However, the opposite phenomenon was found in M-CHAT screening for ASD risk, with parents of children who were screened out with a higher risk of ASD having a lower level of education [18].
Paternal QOL was not associated with child development; rather, it was associated with maternal QOL in both the mental and physical health aspects. This is consistent with a previous qualitative study that showed that fathers of children with ASD were not associated with their children’s condition; however, their children’s condition was associated with their partner’s condition, which in turn affected them [41]. Another study also found that the stress perceived by fathers of children with ASD was not associated with child characteristics but was positively predicted by their partner’s depression [42]. A review of stress and coping in parents of children with ASD found that maternal mental health predicted a positive paternal parenting experience [43], and their children's behavior does not affect fathers' directly, but rather through their spouses' stress [41]. Since mothers carry the main burden in terms of caregiving, their QOL and children’s condition are more closely connected, while fathers serve as backup support for the mothers [41].
A limitation of this study is the small magnitude of effect. Since this is a community study, there is a spectrum of severity in the symptom of ASD included. Community based studies may differ from clinical studies, in that clinical cases have already sought help, thus they are generally more severe and difficult to recover. In the same line the sample size of those diagnosed is small (5 children with ASD diagnosis and 26 with DD diagnosis), resulting in the small variance. Furthermore, there are a broad array of factors which may effect parental QOL (such as children’s genetic information, medical comorbidities, or whether other siblings have ASD/DD diagnosis), and children's risk and diagnosis for DD and ASD, only direct effect were investigated in this study. However, there maybe mediating factors, thus when only the direct effects are investigated the magnitude of effect may be lessened. Since this is the pilot of a longitudinal follow-up birth cohort study, the causality and associations of these factors can continuously be observed in the large birth cohort sample with more children diagnosed later follow-ups. The second limitation of this study was that all measurements were based on parental report, including perceived health QOL, maternal childcare pressure, and family support. We used the dataset from a national birth cohort study, with the aim to collect data on all variables that may affect the child health and development, thus only simplified inventories could be used to measure childcare pressure and family support, rather than clinician inventories. In addition, children’s measures of development were also from parental reports, including those in the broadband development screening (TBCS-DI) and the narrowband ASD screening (M-CHAT) instruments. These screening instruments resulted in a high prevalence of ASD (18%) and DD (32.1%). However, it should be noted that previous studies have found that those screened as false positive performed substantially poorer academically than true negatives [44]. Furthermore, it has been shown that parental reports of their concerns are reflective of true problems [45, 46]. It should be noted that the diagnostic rate found in our study is low compared to that in the US, where a prevalence of 2.24% for ASD and 3.57% for DD was found [47], therefore we hypothesize that some children screened out at high risk are still waiting to be diagnosed. A previous study found an urbanization and educational disparity in ASD diagnosis in Taiwan, with children of mothers with higher education and living in the city having a 2.37 times higher chance of being diagnosed with ASD compared to children of mothers wither lower level of education and living in rural areas [18]. Showing that parents and professionals in urban areas have higher awareness of the disorder [48], on the other hand, the lack of access to diagnostic services in rural areas leads to lower diagnosis [49]. This also reflects the need to raise awareness of ASD in Taiwan and prevent underdiagnosis.