Abstract
Chronically ill children require several hours of additional care per day compared to healthy children. As parents provide most of this care, they have to incorporate it into their daily schedule, which implies a reduction in time for other activities. The study aimed to assess the effect of having a chronically ill child on parental employment and parental leisure activity time, and to explore the role of demographic, social, and disease-related variables in relation to employment and leisure activities. Outcomes of 576 parents of chronically ill children and 441 parents of healthy school children were analyzed with multivariate regression. Having a chronically ill child was negatively related with family employment, maternal labor force participation, and leisure activity time. Use of child care was positively related to family and maternal employment of the total group of parents. Within parents of chronically ill children, most important finding was the negative relation of dependency of the child on daily care and low parental educational level with family and maternal employment. In conclusion, parents of chronically ill children, mothers in particular, are disadvantaged in society probably due to the challenge of combining child care with work and leisure time.
Introduction
The number of chronically ill children has increased in the last decades and is expected to further increase due to medical advancements, and due to genetic, social, and behavioral changes (Perrin et al., 2007). Chronically ill children require several hours of additional care per day compared to healthy children (Heyman et al., 2004; Wilson et al., 2005). As parents provide most of this care (Heaton et al., 2005; Roberts and Lawton, 2001), they have to incorporate it into their daily schedule, which implies a reduction in time for other activities such as employment and leisure activities. Several studies indeed demonstrated that parents of chronically ill children are less often employed and spend less time on personal care and doing leisure activities (Brandon, 2007; Heaton et al., 2005; Kirk, 1998).
Across studies, approximately 30% of parents reported that they stopped working due to the care they need to give to their ill children (Chen and Newacheck, 2006; Eiser and Upton, 2007; Kuhlthau et al., 2005; Kuhlthau and Perrin, 2001; Thyen et al., 1999). Additionally, parents report to work fewer hours or to have changed jobs due to the care for their ill child (Brandon, 2007; Chen and Newacheck, 2006; Eiser and Upton, 2007; Thyen et al., 1999). These changes in work may lead to financial problems (Chen and Newacheck, 2006; Kuhlthau et al., 2005), different career perspectives (Kuhlthau et al., 2005), and psychological distress (Klassen et al., 2007). Workforce participation offers—besides income—a lot of other additional benefits like social relationships, development of skills, daily rhythms, and often, meaning in life (Schur, 2002; van Campen and Cardol, 2009).
Factors related to employment of parents of chronically ill children are demographic variables, functional status of the child, and care-giving demands. Furthermore, leave arrangements and health insurance are also related to parental employment. Providing paid leave to parents increases the availability to care for their children (Heyman et al., 2004). However, many parents of children with special health-care needs reported unmet need for leave (Chung et al., 2007).
Leisure activities of parents of chronically ill children have not been studied extensively. Available studies show that parents with a disabled or chronically ill child do not have enough time for their hobbies (Brandon, 2007; Taanila et al., 1999).
Despite the number of studies addressing employment of parents of chronically ill children, most studies have been carried out among samples of parents of chronically ill children only, while only a few studies made a comparison with parents of healthy children. Also, comparison between studies is hampered as few studies used a clear definition of chronic childhood disease. What’s more, studies can only be extrapolated between countries to a certain extent, as different regulation concerning insurance and leave arrangements probably influences parental ability to stay at home or be employed (Heyman et al., 2004). The majority of these studies have been conducted in the United States.
The present study aimed to enhance insight into employment and leisure activities of parents of chronically ill children. In this paper, we explore family employment, maternal labor force participation, and time spent doing leisure activities by parents of chronically ill children compared to parents of healthy children in the Netherlands, a country with a comprehensive civil social support system. According to a consensus-based definition (Mokkink et al., 2008), 10 diverse groups of chronic childhood diseases were included (van der Lee et al., 2007) (see Participants section). The main questions to be answered in this paper are: what is the association of having a chronically ill child with family employment, maternal employment, and leisure activities of parents and which demographic, social, and disease-related factors are associated with these outcome variables?
Patients and methods
Participants
Parents of chronically ill children who participated in this study were employed using the definition of chronic illness of Mokkink et al. (2008): (1) the disease occurs in children aged 0–18 years, (2) the diagnosis is based on medical scientific knowledge, (3) the disease is not (yet) curable, and (4) the disease exists for at least three months, or will probably endure longer, or at least three disease episodes occurred the last year. A total of 10 chronic diseases were included: asthma, diabetes, Down syndrome, Duchenne muscular dystrophy, end-stage renal disease, metabolic diseases, profound multiple handicaps, sickle cell disease, spina bifida, and survivors of a brain tumor who suffer from long-term effects of the disease and/or treatment. Additional inclusion criteria for the present study were: (1) the chronically ill children were 1–18 years old, (2) diagnosed more than one year before inclusion in the study, (3) lived at home, and (4) parents were able to fill out the questionnaire in Dutch or English.
Parents were eligible for the comparison group if (1) their child was not chronically ill, (2) their child was aged between 1 and 18 years, (3) their child lived at home, and (4) the parents were able to fill out the questionnaire in Dutch or English.
Recruitment
The majority of parents with a chronically ill child in one of the 10 selected disease groups were recruited through the Emma Children’s Hospital, the Netherlands. Parents of children with Duchenne muscular dystrophy were members of the Dutch Duchenne Parent Project, and parents of children with metabolic diseases were members of the Parents and Children with Metabolic Diseases (Volwassenen en Kinderen met Stofwisselingsziekten: VKS) organization.
The comparison group of parents of healthy children was recruited from two elementary schools and one high school located within 50 km of Emma Children’s Hospital.
Between January 2006 and September 2007, parents received an introductory letter explaining the aim of the study and asking for their participation. The letter was accompanied by a self-report questionnaire, an informed consent form, and a stamped self-addressed envelope. Each family received one questionnaire, which was completed at home by one parent. In the comparison group, the school children took an envelope with the information and the questionnaire home for their parents. The specific recruitment procedure for each (disease) group is described in the appendix of Hatzmann et al. (2008).
Measurement
A self-report questionnaire containing questions regarding demographics, education, employment, leisure activities, child care, additional burden in the family (e.g., chronic illness of parents), and characteristics of the chronically ill child was developed (see Appendix 1). Several questions were adapted from other studies (Kars et al., 2005; Snyder, 1981; van Acker, 2005; van Agt et al., 1996)). The questionnaire was pretested with 15 parents of chronically ill children who met the inclusion criteria. Based on their suggestions, modifications were made to improve the survey’s content and clarity. A number of questions concerning demographics and employment status had also to be answered for the partner.
Employment status and leisure time activities (outcome variables)
Outcome variables were family employment status, maternal labor force participation, and leisure activity time. Family employment status was a dichotomous variable indicating whether a child’s parents performed 20 hours of paid work per week or more, on average (i.e., jointly 40 hours or more in a two-parent family). Maternal labor force participation was a dichotomous variable indicating whether a child’s mother worked 12 hours per week or more, following the definition of labor force participation in the Netherlands by the Dutch Central Bureau of Statistics. Leisure activity time was a continuous variable defined as the total number of hours per week spent by the parent doing sports or other leisure activities.
Social and disease-related variables
The following explanatory variables were included in the analyses: having a chronically ill child (yes/no), age of the chronically ill child, course of disease in the last year (progressive, improving, constant, relapsing), emotional support, and dependency of the child on daily care. Perceived quality of emotional support was defined as the sum of support (0 = no support, 1 = more or less, 2 = good support) from partner, family, friends, or neighbors, resulting in a score from 0 to 8; 0 indicates no support and 8 indicates very good support.
Dependency on daily care was defined as the sum of dependencies (0 = no, 1 = yes) on the following aspects of daily life of the child: physical care, mobility, eating and drinking, medication use, coping with devices, amusing himself/herself, contact with other children, and education (range 0–8).
Sociodemographic variables
The following potentially confounding variables were included in the analyses: gender of parent, marital status of parent (partner yes/no), parental age, parental education level (low, intermediate, high), parent’s country of birth (the Netherlands or elsewhere), number of children (1, 2–3, >4), chronic illness of parent (yes/no), and use of paid (yes/no) or unpaid child care (yes/no).
Statistical analysis
Parents of chronically ill children were compared to parents with healthy children on all measured variables (Table 1) using Student’s t test and the Mann–Whitney U test (continuous data) and the χ 2 test (categorical data). The associations of the sociodemographic, social and disease-related variables with the three outcome variables were assessed using multivariate regression analysis, excluding parents with missing values. Data of 845 parents could be used for the regression model for family employment, excluding 172 parents due to missing values. Included and excluded cases did not differ with respect to the sociodemographic characteristics as presented in Table 1, except that among the excluded cases, parents more often had a partner.
Characteristics of the parents.
aEducational level: Lower: elementary education, MAVO (general secondary education-junior level), VBO (lower vocational education); Intermediate: HAVO/VWO (general secondary education-senior level) and MBO (vocational education-junior level); Higher: HBO (vocational education-senior level) and WO (university education).
Note: “–” indicates not measured for comparison group.
bChild care use in mean hours a week; parents who did not use child care were excluded.
*p < .05; **p < .01.
Logistic regression analyses were conducted for family employment status and maternal labor force participation, and linear regression analysis was conducted for leisure activity time. The analysis of maternal labor force participation was restricted to two-parent families.
For each of the three outcome variables, two analyses were performed. The first analysis considered both parent groups, including sociodemographic variables, emotional support, and ‘having a chronically ill child’. The second analysis considered only parents of chronically ill children and used sociodemographic and social and disease-related variables (except ‘having a chronically ill child’). Prior to the analysis, a logarithmic transformation was applied to the outcome variable ‘leisure activity time’ to cope with the skewness in its distribution.
A significance level of p = .05 was used in all statistical tests. The analyses were performed using S-PLUS version 6.2 (Insightful Corp, Seattle, Washington, USA).
Results
Participants
In total, 580 of 1106 invited parents of chronically ill children participated in this study. The average response rate was 52%, ranging from 37 to 71% across diagnosis groups. A total of 443 parents of healthy children formed the comparison group (response rate 35%). Nonparticipants did not differ from participants with respect to age and gender of their chronically ill child, except for the children with asthma and sickle cell disease, with a higher proportion of boys in the nonparticipating asthma group and a lower proportion of boys in the nonparticipating sickle cell group. Further demographic information of the nonparticipating parents was not available. Parents who had no residence permit (n = 6) were excluded from the analysis, which resulted in a final sample of 1017 parents consisting of 576 parents of chronically ill children and 441 parents in the comparison group.
Comparison between parents of chronically ill children and parents of healthy children
Table 1 shows the sociodemographic characteristics of parents with chronically ill children and parents with healthy children (comparison group). There were no differences between the two groups of parents with respect to age, gender, marital status, and country of birth. The two groups differed in educational level, with a larger proportion of highly educated parents in the comparison group (p < .05). The number of children per household and parental age also differed between the groups; however, these differences were small.
Table 2 shows the effect of having a chronically ill child on parental employment (family employment and maternal labor force participation) and leisure activity time, corrected for possible confounding effects of sociodemographic variables. The results showed that parents with chronically ill children less often worked at least 20 hours per parent per week than parents of healthy children. The odds of family employment were also lower when one of the parents was chronically ill, but higher when paid child care was used.
Multivariate analyses of employment and leisure time of parents of chronically ill and healthy children.
OR: odds ratio; CI: confidence interval.
Note: The highest educational level within a family was used for analyses of hours of family employment; empty box: variable not included in analysis; –: reference category.
a≥20 hours a week on average; jointly ≥40 hours in two-parent families.
b≥12 hours per week.
cAge: spline function with two degrees of freedom.
*p < .05; **p < .01.
For the analysis of maternal labor force participation, data of the mothers from two-parent families were used. In 511 families (64.4%), the mother worked more than 12 hours a week. The odds of working ≥12 hours a week decreased when mothers had a chronically ill child and when they had a low level of education. Increasing age and making use of paid and unpaid child care led to higher odds of mothers working ≥12 hours a week.
Parents of chronically ill children spent less time doing leisure activities, on average 9% less (corrected for other variables in the regression analysis). Low level of education and being born outside the Netherlands were also associated with less time spent on leisure activities, while higher age, being the father, and more emotional support were associated with more time spent on leisure activities.
Exploration of social and disease-related factors among parents of chronically ill children
Within the group of parents of chronically ill children (Table 3), higher dependency of the chronically ill child on daily care and low level of education of the parents led to lower odds of working more than 20 hours a week. Higher odds of working were found for using paid and unpaid child care and older age of the chronically ill child.
Multivariate analyses of employment and leisure time of parents of chronically ill children.
OR: odds ratio; CI: confidence interval.
Note: The highest educational level within a family was used for analyses of hours family employment; Empty box: variable not included in analysis; Reference category.
aOn average ≥20 hours a week and jointly ≥40 hours in two-parent families.
bLabor force participation of ≥12 hours per week.
cAge of the parent is a spline function with two degrees of freedom.
*p < .05; **p < .01.
Within the group of mothers of chronically ill children (from two-parent families), higher dependency of the chronically ill child on daily care and low level of education of the mother led to lower odds of working ≥12 hours a week. Use of paid and unpaid child care and a small family (one child) led to higher odds of mothers working ≥12 hours a week. No disease-related variables were associated with maternal labor force participation.
Leisure activity time spent by parents of chronically ill children was negatively associated with low level of education and being born outside the Netherlands.
Discussion
In the Netherlands, several governmental arrangements are available for employees to simplify the combination of work and family life. Despite these efforts, our results indicate that having a chronically ill child reduced time spent working on a family level and for mothers, and reduced leisure activity time. Parents of chronically ill children worked fewer hours a week, mothers less often participated in the labor force, and parents spent less time doing leisure activities than parents of healthy children. Dependency of the child on daily care was negatively associated with family employment and maternal labor force participation, but not with leisure activity time. Parents making use of child care had a higher probability of working more hours a week, while the association of child care with employment was stronger for mothers than on family level. In addition, low-educated parents were less likely to be employed and spent less time on leisure time activities.
The present study corroborates on other studies finding lower employment rates in families with chronically ill children compared to families with healthy children. In the present study, hours of family employment and maternal employment were negatively associated with care dependency of the child, indicating that it is difficult to combine the care for a chronically ill child with paid work. In the literature, this is mostly found among mothers. Kuhlthau and Perrin (2001) showed that for mothers, activity limitation of their child was the strongest predictor of reduced employment. From the literature, it is also known that mothers reduce working hours, while fathers continue working and are financial providers of the family (Pelchat et al., 2007). This also seemed to apply for the families in our study. Descriptive data of our sample showed that fathers of both chronically ill and healthy children worked on average 34 hours a week. On the other hand, mothers of chronically ill children worked on average 12 hours a week, while mothers of healthy children worked 18 hours a week. Thus, the division in employment between mothers and fathers is stronger among parents of chronically ill children, although it is also seen in the general population (Fitzenberger et al., 2009).
It is known that lower employment rates may influence parental well-being. Having an interesting job reduces parental stress (Warfield, 2001), and unemployment is negatively associated with well-being (Artazcoz et al., 2004). In that perspective, parents of chronically ill children, especially mothers, are disadvantaged.
Not surprisingly, using child care was positively related to family employment and maternal labor force participation, with the largest effect for mothers of chronically ill children. Although parents of chronically ill children more often made use of child care (unpaid: 23.7%; paid 30.1%) than parents of healthy children (unpaid 17.5%; paid 17%), maternal labor force participation was still lower among parents of chronically ill children. Perhaps, for parents of children with specific care requirements, it is more difficult to find adequate trained and educated people to care for the ill child.
Leisure activity time shows a similar picture as employment. Having a child with a chronic illness was associated with less leisure activity time in parents. In the total group, fathers spent more time doing leisure activities than mothers; however, this effect is not found within the group of mothers and fathers of chronically ill children. In the literature, the effect of reduced leisure time activities on health or well-being is mainly measured as physical activity, and its effect on health and well-being is equivocal. The present study focused on leisure activity time in a broader sense, also including leisure time other than exercise or sports, but excluding the quality of the time spent. Although no direct effect of hours of leisure activity time on parental health-related quality of life was found in our sample (Hatzmann et al., 2009), studies in other populations show beneficial effects of leisure activities on health and well-being (Iwasaki, 2006; Wilkinson et al., 2007).
Limitations and future research
A first limitation of this study is the generalizability of the results. There is a clear gender difference in employment but only a small number of fathers were included. We had only some indirect information about fathers who did not participate because respondents (mainly mothers) were asked about the employment situation of their partner. Besides fathers, single parents, and parents born outside the Netherlands were also underrepresented in our study. Also, parents in our study had a relatively high level of education compared with the average Dutch population. This may have resulted in an underestimation of employment problems as low education is associated with less hours of paid employment. Second, the number of missing cases in the regression analyses may have led to biased results. Yet, the risk of added bias is little, as the sociodemographic characteristics of the missing cases do not differ from the characteristics of the full cases. Third, we did not study the complex role of (paid) leave arrangements (Chung et al., 2007; Schuster et al., 2009). Finally, due to the cross-sectional design of the study, causality and changes over time could not be assessed. Longitudinal studies on parents are needed to give further insight in the dynamics of employment and leisure activity time of caregivers.
Conclusion
Our study, including parents of children from 10 different disease groups and a comparison group of parents with healthy children gives a generic view on parental functioning in society in terms of social participation. Parents of chronically ill children, mothers in particular, seemed to be disadvantaged in society probably due to the challenge of combining child care with work and leisure time. It should be widely recognized that adequate child care might stimulate parental employment, especially in mothers of chronically ill children. Both parents and employers could benefit from adequate child care. Although this is not easily realized for all chronically ill children (e.g., technology-dependent children), extra effort is needed on this matter. Early recognition of difficulties in combining work with caring for a chronically ill child and referral to social workers may help reduce the consequences.
Footnotes
Authors’ note
Author J.H. wrote the first draft of the manuscript.
Declaration of Conflicting Interests
The authors declared no conflicts of interest.
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
