The impact of a child's special health care needs on maternal sickness and work participation

The number of children with chronic special health care needs is growing and child caring tasks have become more demanding. Although gender equality is cornerstone of the Norway society, international studies suggest that mothers rather than fathers shoulder the burden of care when a child is chronically sick. This reduces the mothers' opportunities to be fully employed and may lead to double-burden and sickness. Thus, the goal of the project was to analyze the employment and sickness absences among mothers of children with special health care needs for up to 6 years after the child's birth. The project has so far resulted in 6 articles published in international peer-reviewed scientific journals with high impact and great relevance to the theme. Findings were also presented at scientific conferences and published online in user fora. The article in Paediatric and Perinatal Epidemiology uses information about children's attendance benefits obtained from the Norwegian Social Security database. Findings show that mothers of children who receive attendance benefits for special care needs have left the labor market when the child was 3 years old to a far greater extent than other mothers of healthy children. The findings also show an association between greater benefits and lower labor participation in the mothers. A follow-up article on maternal employment and income is resubmitted for peer review. There, the mothers' employment history and income development was analysed for the period between the child's 1st and 6th birthday. Findings showed that mothers of children who received attendance benefits were more often non-employed and had weaker income growth already from age child 2 years. The article in Maternal and Child Health Journal examines the relationships between the child's birth weight and maternal employment 1-3 years and 4-6 years after birth. We found that birth weight did not matter for employment until the child was 1-3 years, while it was important when the child was 4-6 years old, when fewer mothers of children with low birth weight had returned to paid employment than mothers of healthy children. An article examining mothers' sickness absence due to mental disorders is published in the Journal of Pediatric Psychology. It shows that mothers of children who receive both ordinary and higher attendance benefits were more often on sick leave due to mental disorders, had more often long-term sick leaves due to mental disorders, and had more often long-term sick leaves due to depression in the period between the child's 1st and 4th birthday. An article published in the Journal and Family and Economic Issues examined employment among all previously employed mothers who reported that their child had internalizing and / or externalizing behavior problems. We showed that mothers who reported that the child has significant behavioral problems (5%) were out of paid employment to a greater extent than mothers of healthy children by the child's 3rd birthday. An article published in the Journal of Marriage and the Family studied employment and long-term sick leave in mothers of children with language and behavioral problems. The survey showed that mothers of children with language difficulties were employed to a lesser degree throughout the children's preschool years. If the language and behavioral problems were comorbid, the risk of non-employment in the mothers was further increased. Mothers of children with language impairment or comorbid language and behavioral problems also had a higher risk of long-term sick leave by the child's 5th birthday. The article published in Developmental Psychology investigated stability and change in psychological distress and life satisfaction among mothers of children with disabilities through pregnancy, the neonatal period and early childhood. We compared mothers who had given birth to a child with either Downs syndrome, lip/palate cleft and mothers of healthy children. Mothers of children with Downs syndrome experienced persistent lower life satisfaction and persistent psychological distress at the follow-up assessments when the child was 6, 18 and 36 months old. Overall, the project revealed that mothers giving birth to a child with special health care needs have lower work participation, suffer more from psychological distress, experience less satisfaction with life, have less income and are more often on long-term sick leaves for mental disorders during the child?s first years of life and up to his or her 6th birthday. There is reason to believe that the differences between mothers of sick and mothers of healthy children will continue to increase, because career and income development require full time employment and full dedication to work. These disadvantages for mothers taking care of a child with special care needs can only be solved on a societal plan.

In Norway, mothers of children aged 0-15 years have twice the rate of sick leaves and half the number of weekly working hours compared to fathers. We claim that mothers' longer sickness absences and restricted working hours in part results from care for o wn children with special health care needs. Around 15% of mothers have a child with a chronic physical, developmental, behavioral/emotional condition requiring health and related services beyond that required by healthy children. In Norway, this translate s to ca. 300 000 afflicted women. These women have a higher risk of mental disorders, sick leaves, and reduced work participation. However, studies on this issue in Norway are lacking. Our study will capitalize from the unique possibility to link the Norw egian Mother and Child Cohort Study (MoBa), which provides psychological information to Norwegian registries providing objective information on maternal sickness absences, child care leaves, and maternal work participation. From the MoBa study, we will in clude 33000 to 90000 mothers followed with repeated questionnaires from pregnancy to child age 5 years. Child diagnoses will comprise congenital conditions, respiratory disorders, dermatological disorders, digestive disorders, and emotional/behavioral pro blems. Mothers report on their child's illness and their own personality. Registry information on these mothers' sick leaves and work participation will be available from before pregnancy to child age 5 years. Questionnaire and registry information on the fathers of these children will also be included. We will compare careers of sickness absences and work participation in mothers of a child with special needs with those of the child's father and those of mothers with healthy children. Specifically, we wi ll examine whether maternal mental disorder functions a mediator of the sick child-sick mother relationship, and whether maternal personality constitutes an additional risk factor