This is the first study that has thrown light on the relationships between the QOL of parents rearing children with PDDs and their psychosocial characteristics.
First, this study has revealed that mothers of children with PDDs had low QOL scores in several mental domains. Almost all previous studies have shown impairment of QOL among such parents. There is a report that parents of children with autism spectrum disorders had significant poorer self-perceived health except for physical health dimensions [17
], and our obtained results are consistent with the findings regarding mothers. According to the previous studies, the children’s disabilities place a higher burden on the mothers among the parents of children with high functioning autism or Asperger’s disease [45
], and there is a tendency for the mothers to suffer stronger impairment than the fathers in terms of the QOL [15
]. Our results are largely in line with these previous reports.
The mothers of children with PDDs seem to have lower QOL than those of children with other chronic diseases because of their children’s symptoms and behavior problems. PDDs seem to place greater burden on the parents in comparison with other developmental disorders. For example, the mothers of children with PDDs tend to have a lower QOL in the psychological domain than the mothers of children with mental retardation [15
]. Parents of children with autism report a greater level of child caring burden, less frequent attendance of religious service, more school days missed, more repeated grades, less participation in activities/events, and less involvement in community services compared to parents of children with ADHD [31
In this study, maternal QOL were significantly related to high Care scores and related to low Control scores in both physical and psychological areas. It has been generally indicated that social support is one of many important factors which contribute to the positive adaption of parents [21
]. In particular, support from their partners seems to be associated with positive maternal outcomes [11
]. The quality of the marriage has been reported to increase the ability to cope with the stress of parenting an autistic child [22
], so that social support from their spouses contributes to positive maternal adaptation to a great extent. For example, single mothers appear to suffer from depression more easily than married mothers [12
]. Some reports have suggested that the distress of mothers of PDD-affected children was correlated with perceived control by their spouses [14
], expressed support from their spouses was the best predictor of quality of parenting [11
], and mothers of autistic children expressed the need for additional support from their spouses [2
]. Mothers should receive not only help but also supportive attitude, and should not be under psychological control from their husbands. According to one study, fathers were also much more likely to see themselves as being a reserve source of support for their wives [45
Moreover, in this study, living with grandparents gave positive maternal QOL scores in physical domains. It is reported that greater family support was associated with increased optimism, and that in turn optimism was associated decreased depression and parenting stress [48
]. Living with grandparents might help mothers and play an important role in maternal physical QOL.
Next we found that impairment of the mental QOL was strongly associated with the personality tendencies of the parents. There are rare reports about the association between QOL and personal traits, but a study exists which has reported that the QOL of patients with mood or anxiety disorders is not only determined by the disease or the current health but is also shaped by personality traits [49
]. Our results showed that parents with higher Neuroticism scores seem to suffer from a poorer QOL especially in psychological areas. The pattern of personality traits appears to dictate the patterns of the QOL. Knowing the parents’ personality traits may therefore help us decide which interventions can be most successful among the parents.
There are few studies which have reported about the QOL of fathers. It is reported that maternal physical health was poorer than paternal physical health, but that self-related mental health did not differ between mothers and fathers of children with Asperger’s disease or high-functioning autism [16
]. It is also reported that fathers of children with PDDs also showed statistically significant lower scores in the social relationship domain compared to fathers of normal developing children and in the psychological domain compared to fathers of children with cerebral palsy, but that mothers showed low scores in more domains than fathers [15
]. Thus fathers seem to show less impairment in their QOL than mothers, but the causes are unknown. In this study, the paternal QOL scores were higher than mothers’ QOL, but psychological domains were significantly associated with the attitude by spouse than those of the mothers.
There are some limitations in this study. First, this is a cross-sectional study, precluding any conclusions from being made with regard to causality. Second, we did not control for the parents’ socioeconomic or marital status and number of rearing children when we compared our subjects with the general population, because such information was not available for the normative dataset of SF-36. In an analysis of the QOL, these issues are regarded as limitations because they have been suggested as factors associated with the cores of SF-36 in preceding reports [15
]. Third, there might be a sampling bias because all the subjects were parents whose children came to the hospital. One population study reported that mothers of children with autistic disorders showed remarkable strengths in the parent–child relationship and coping with parenting tasks regardless of high stress and poor mental health [20
]. Future research should be performed on the general population basis.
Taken together, the results of the present study suggest that we may need to support parents, especially mothers, of children with PDDs in all the aspects of their lives that have been shown to correlate with their QOL. Social support strategies including the spousal support have been identified as the important factor for these mothers. We would need further studies with a similar design to replicate this finding not only in the treatment-seeking subjects but also in the community-dwelling subjects and their families.