Long-time sickness absence among parents of pre-school children with cerebral palsy, spina bifida and down syndrome: a longitudinal study
The results showed that caring for a child with special needs seems to affect the level of maternal sickness absence, particularly in the first year after the birth. We cannot be completely sure that the increased sickness absence is caused by the caring burden, however the results are in line with previous research showing that mothers caring for a child with special needs are at substantial risk of a long-term sick leave due to psychiatric disorders [9]. Moreover, a recent review article also indicates that caring for a child with special needs has adverse effects on mothers’ health [3]. Thus, there is reasonable to suggest that intensified care burden affect mother’s health, which in turn will increase long-term sickness absence. In addition, struggling with the health and social care system, and challenges in everyday life among these families [4, 5] might also result in maternal sickness absence due to distress and time demanding tasks related to having a child with special needs.
Furthermore, the results demonstrated that sickness absence was greater among mothers caring for a child with spina bifida and cerebral palsy than among mothers of children with Down syndrome. The sickness absence of the fathers caring for a child with cerebral palsy, spina bifida and Down syndrome was similar to that of the fathers of a child without special needs.
The aim of this article was to shed light on the health and sickness absence of parents caring for pre-school children with spina bifida, cerebral palsy and Down syndrome. An additional goal was to analyse differences in parental sickness absence according to the type of special needs the child had and differences between the levels of absenteeism of the mothers versus the fathers. The results showed that caring for a child with special needs affected maternal sick leave, with the mothers of pre-school children who had spina bifida, cerebral palsy and Down syndrome having higher sickness absence than the mothers of children with no special needs. This result is in line with that of previous research [6, 9]. It supports the notion that caring for a child with special needs impairs maternal health, resulting in an increased level of sick leave. The findings also illustrated that caring for a child with special needs affected only the mother’s level of sick leave, not that of the fathers, whose sickness absence levels were similar to those of the fathers of children without special needs. This finding is in accordance with that of previous studies [3, 6–8]. Mothers are often the primary caregiver [21, 24]. The results of the present study seem to indicate that the responsibility of caring for a child with special needs falls predominantly on the mothers.
The present study also showed that the sickness absence patterns among the parents varied according to the child’s age, with the greatest effects on maternal sick leave observed in the first year after the child was born. This applied to all the mothers, irrespective of the type of special needs of the child (i.e. spina bifida, cerebral palsy or Down syndrome). The first year may be the most critical, possibly due to the major adjustments that have to be made when the mothers return to work and the child starts in kindergarten.
The results also illustrated that the sickness absence patterns differed according to the type of special need, with the mothers of children with cerebral palsy and spina bifida having higher sickness absence levels than the mothers of children with Down syndrome. The results confirm previous research, which found that mothers of children with Down syndrome often fare better than mothers of children with other types of special needs [11, 13]. The higher levels of sickness absence among the mothers of children with cerebral palsy and spina bifida may be related to the fact that these children have physical disabilities. These may be particularly challenging when the child enters kindergarten. In the first year of life, many children with cerebral palsy have feeding difficulties due to oral motor dysfunction [25], in addition to other types of impairments, such as spasticity, dyskinesia and ataxia [26]. Children with spina bifida may have bladder and bowel dysfunction, which was found to be a stressor among parents [27]. Urinary tract infections were also reported to be common among children with spina bifida [28]. The increased level of stress and worry associated with the complex care needs of children with spina bifida or cerebral palsy may increase the level of maternal sick leave.
The strengths of this study are the large sample size and longitudinal design, with a wide range of sociodemographic, health and work-related pre- and post-birth data on both fathers and mothers who gave birth from 2001 to 2005. Cross-sectional studies have tended to dominate this area of research. The present study included both mothers and fathers, whereas previous research focused mainly on mothers. An additional strength of this study is the inclusion of data on children with different special needs. Thus, it was possible to analyse differences in parental sick leave according to the type of special needs the child had. The first limitation of this study is that the follow-up data included children only up to the age of 4 years. It is possible that the between-group differences in parental sick leave patterns observed herein may have changed when the child was older. For example, previous research indicated that stress among parents of children with Down syndrome increased over time [12, 29]. Second, the sample size of the spina bifida and cerebral palsy groups was rather small. Therefore, the two groups had to be merged into one group. A third limitation is that the data did not contain information on attendance allowances, which compensate for the loss of income related to care responsibilities2. Thus, the differences in sickness absence between the parents of a child with special needs and those of a child without special needs might be underestimated [2]. Finally, the last limitation is that in the first year after birth many women in Norway are on parental leave for large parts of this year. Thus, we are not able to compare sick leave across calendar years. However, the focus in the present article is differences in sick leave between parents with a child with special needs and parents with a healthy child. In this respect, the problems related to parental leave in year 1 is not problematic since the situation is comparable for the two groups of parents.