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Am J Public Health. 2009 April; 99(4): 698–705.
PMCID: PMC2661484

Perceived Effects of Leave From Work and the Role of Paid Leave Among Parents of Children With Special Health Care Needs


Objectives. We examined the perceived effects of leave from work among employed parents of children with special health care needs.

Methods. Telephone interviews were conducted from November 2003 to January 2004 with 585 parents who had missed 1 or more workdays for their child's illness in the previous year.

Results. Most parents reported positive effects of leave on their child's physical (81%) and emotional (85%) health; 57% reported a positive effect on their own emotional health, although 24% reported a negative effect. Most parents reported no effect (44%) or a negative effect (42%) on job performance; 73% reported leave-related financial problems. In multivariate analyses, parents receiving full pay during leave were more likely than were parents receiving no pay to report positive effects on child physical (odds ratio [OR] = 1.85) and emotional (OR = 1.68) health and parent emotional health (OR = 1.70), and were less likely to report financial problems (OR = 0.20).

Conclusions. Employed parents believed that leave-taking benefited the health of their children with special health care needs and their own emotional health, but compromised their job performance and finances. Parents who received full pay reported better consequences across the board. Access to paid leave, particularly with full pay, may improve parent and child outcomes.

Children with special health care needs are defined as children “who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”1 These children make up 13% to 17% of US children26 and account for a vastly disproportionate number of hospital days,7 medical encounters,3,7 and school absences.8

Parents of children with special health care needs must often choose between being with their child when he or she is ill and going to work.9 The 1993 federal Family and Medical Leave Act (FMLA) guarantees eligible workers up to 12 weeks of unpaid leave annually to care for themselves or ill family members without risk of being fired.10 Only half of employees, however, are eligible for FMLA leave,11 and many choose not to use it because the leave is unpaid.10 Although some can use vacation or sick leave, others have no access to employer-provided leave.12 To address these gaps, several states have begun to implement or are considering establishing paid family-leave programs,1316 and Congress is exploring similar policies as well.1721

Access to FMLA and employer-provided leave has been associated with more leave-taking and less unmet need for leave among parents of children with special health care needs.22,23 Effects of leave-taking, however, are unknown. Although leave-taking may improve child health, it may also require employment-related and financial sacrifices that might harm parents and families, creating a complex picture of benefits and costs. Parents' perceptions of effects are particularly important to understand. Studies have shown that parental perceptions of child health are a primary determinant of health care utilization.2426 Similarly, perceptions of leave's effects will likely shape parents' decisions about childcare and employment, responses to future child illnesses, and reactions to new employer or government initiatives. Moreover, differences in the perceived effects of paid and unpaid leave may influence how employers and policymakers weigh costs and benefits of paid leave programs.

We report on employed parents of children with special health care needs who took leave in the past year to care for their child and their perceptions of leave's effects in 5 domains: their child's physical health, their child's emotional health, their own emotional health, their job performance, and their finances. We also examined associations with factors that might influence these perceptions and that might have relevance for policy discussions regarding paid leave options, including receipt of full or partial pay during leave.


We sampled children receiving inpatient or outpatient care at 2 tertiary-care referral centers (and associated clinics): Chicago's Children's Memorial Hospital and University of California Los Angeles' Mattel Children's Hospital. Such hospitals provide the vast majority of specialized care for children with complex conditions.27

We identified children with special health care needs by adapting a validated approach that used International Classification of Diseases, Ninth Revision (ICD-9), billing codes.2832 This approach generally yields samples dominated by common diagnoses typically requiring few missed work days. Because we were most interested in children with special health care needs whose parents needed to miss work, we restricted the list to disease categories with the highest average per-patient physician charges (list appears elsewhere22). Previous studies suggest that patient charges correlate with illness severity.8,3335

We used this list to identify all children younger than 18 years in hospital billing databases who were assigned a qualifying diagnosis from October 1, 2002, to September 30, 2003; listed as alive; and living in their respective states (3680 Children's Memorial Hospital; 1570 Mattel Children's Hospital). To undersample parents who were less likely to be employed, we stratified by Medicaid status (details appear elsewhere22).

Data Collection

Interviewers conducted 40-minute computer-assisted telephone interviews (English or Spanish). In 2-parent households, we interviewed whichever parent was available and willing to participate, and if both were available and willing, we interviewed whichever parent worked more hours. If they worked similar hours, we interviewed the father (prior experience suggested that fewer fathers participate in interviews).

From November 2003 to January 2004, we completed interviews with 554 parents from Children's Memorial Hospital and 562 from Mattel Children's Hospital. We excluded parents with incorrect (11%) or nonconfirmable (6%) contact information and parents who were ineligible (3%) because they were younger than 18 years, not English- or Spanish-speaking, too ill to participate, or their child had died. Final cooperation rates were 89% for Children's Memorial Hospital parents and 85% for Mattel Children's Hospital parents.36

Participating hospitals and institutional review boards approved the study and provided Health Insurance Portability and Accountability Act waivers.


We created 5 outcome measures: perceived effect of the longest leave ever taken for their child's chronic illness on (1) child physical health, (2) child emotional health, (3) parent emotional health, (4) parent job performance, and (5) family finances. For outcomes 1 through 4, parents were asked, “For the longest period of time you missed work due to [child]'s illness, what kind of effect did missing work have on”: (1) “[child]'s physical health,” (2) “[child]'s emotional health,” (3) “your own emotional health,” and (4) “your ability to perform your job?” Response options were: very good, good, neither good nor bad, bad, and very bad. For outcome 5, parents were asked 6 financial-impact questions (“yes” or “no”; Table 1). We asked about longest leave in case parents took multiple leaves with different perceived effects.

Perceived Effects of Longest Leave From Work to Care for Ill Children With Special Health Care Needs, by Pay Status: Chicago, IL, and Los Angeles, CA, November 2003–January 2004

Because outcome variables 1 through 4 did not meet parallel regression assumptions that would have allowed multicategory ordered logistic regression, we dichotomized outcomes 1 and 2 as very good versus other and 3 and 4 as very good or good versus other. Cut-points for dichotomization were based on response distributions—responses for outcomes 1 and 2 were predominantly very good and good, which prevented dichotomization at very good or good versus other. For outcome 5, the 6 financial variables (α = .71) were summed into a count of financial problems and categorized into a 3-level ordinal outcome (0 or 1, 2 or 3, or 4 to 6 problems) that met parallel regression assumptions.

We chose variables that we hypothesized would predict parent-perceived effects of leave on our outcomes. Predictors included parent demographics, questions about the longest leave ever taken for child's chronic illness, and child demographics and health measures (e.g., Pediatric Quality of Life Inventory [PedsQL] short version,37 hospitalizations in the past year; Table 2). Some items came from the Department of Labor Survey of Employees.10 Some were developed by the researchers; reviewed by clinicians, attorneys, and social scientists familiar with children with special health care needs and labor issues; and pilot tested among parents of children with special health care needs.

Characteristics of Families With Employed Parents Who Missed 1 or More Days of Work to Care for Ill Child With Special Health Care Needs, by Pay Status: Chicago, IL, and Los Angeles, CA, November 2003–January 2004

The PedsQL, a commonly used measure of health-related quality of life, is not defined for children younger than 2 years, so we assigned these children the mean PedsQL score for the sample and marked them with an indicator variable, allowing their inclusion in multivariate models without biasing estimates of PedsQL-related associations.

Within the question set regarding the longest leave ever taken for their child's chronic illness, we asked, “During the longest period of time you missed work due to [child]'s illness, how many days did you miss work?” ( ≤ 1 week, > 1–2 weeks, > 2–4 weeks, > 4–12 weeks, or > 12 weeks) and “How much pay did you receive while you missed work that time?” (none, partial pay, or full pay).

Statistical Analysis

We compared respondents (n = 1116) to eligible nonrespondents (n = 165) by child age, Medicaid status, ICD-9 category, and site; site (11% from Children's Memorial Hospital vs 15% from Mattel Children's Hospital; P = .038) and Medicaid status (7% Medicaid vs 14% no Medicaid; P = .042) predicted nonresponse. Analyses incorporated weights accounting for nonresponse (inverse predicted probabilities of multivariate logistic regressions) and Medicaid status. No variable was missing for more than 3% of parents. To prevent bias from limiting analyses to complete cases,39 we imputed data with the chained-equations approach.40

The analysis sample consisted of the 79% of all part-time and full-time employed parents who missed 1 or more days of work for their child's illness (n = 585). Full-time status was defined as working 30 or more hours per week. Because pay during leave was a variable of special interest, we used bivariate regressions (linear, logistic, multinomial, or ordered logistic, depending on how the dependent variable was characterized) to assess whether outcomes and predictors were associated with pay during leave (Tables 1 and and2).2). We then performed multivariate logistic (for child physical and emotional health, parent emotional health, and parent job performance) and ordered logistic (for family finances) regressions by using the predictors in Table 2 (except child gender, which did not pass bivariate screening for model parsimony41) and pay during leave. In case the 6 items in our family finances index were heterogeneous with respect to associations, we conducted sensitivity analyses in which we repeated regressions by using various subsets of the index items.

We present regression coefficients as odds ratios (ORs) and translate selected ORs into the covariate-adjusted percentages of respondents associated with a given predictor, holding covariates at their naturally occurring values.42


Sixty-three percent of interviewed parents of children in the sample were women; 54% were White, 25% were Hispanic, 12% were Black, and 8% were “other”; 42% were FMLA-eligible; 63% were not college graduates; and 41% had a household income of less than $50 000. Fifty percent of the children were 9 years or younger, and 69% had a PedsQL score of 80 or less (out of 100; the mean PedsQL score for healthy children is 8438); 47% had been hospitalized in the past year, and 14% had been hospitalized 4 times or more (Table 2).

The duration of parents' longest leave was 1 week or less (36%), more than 1 week to 2 weeks (16%), more than 2 weeks to 4 weeks (18%), more than 4 weeks to 12 weeks (16%), or more than 12 weeks (14%; Table 1). During that leave, parents received no pay (43%), partial pay (15%), or full pay (42%). Parents who missed 4 weeks or less were more likely to receive full pay than were parents who missed more than 4 weeks (46% vs 20%; P < .001; data not shown).

Perceived Effects of Leave

Forty-three percent of parents reported that leave (i.e., their longest leave) had a very good effect on their child's physical health, and 38% reported a good effect. Fifty-two percent of parents said that leave had a very good effect on their child's emotional health, and 33% reported a good effect (Table 1).

Most parents (57%) reported that leave had a good or very good effect on their own emotional health, but a substantial minority reported a neutral (18%) or negative (24%) effect (Table 1). Parents who said that leave had a very good effect on child physical or emotional health were more likely than were other parents to report a good or very good effect on their own emotional health (67% vs 44%; P < .001; data not shown).

Fourteen percent of parents reported that leave-taking had a good or very good effect on their ability to perform their job, 44% reported no effect, and 42% reported a bad or very bad effect (Table 1).

Leave-taking also appeared to strain some parents' finances. Parents reported using savings set aside for health needs (41%), using savings set aside for other uses (42%), borrowing money to cover lost pay (27%), signing up for public assistance (12%), limiting spending on basic needs (56%), and putting off paying bills (35%) because of their leave-taking (Table 1). Twenty-six percent reported no such problems, 16% reported 1 problem, 17% reported 2 problems, 17% reported 3 problems, and 24% reported 4 to 6 problems.

In multivariate analyses, full pay, compared with no pay, significantly predicted 4 of the 5 outcomes: it was associated with parents perceiving that leave had a positive effect on child physical health (OR = 1.85; 95% confidence interval [CI] = 1.13, 3.03) and child emotional health (OR = 1.68; 95% CI = 1.02, 2.76), a positive effect on parent emotional health (OR = 1.70; 95% CI = 1.04, 2.77), and fewer financial problems (OR = 0.20; 95% CI = 0.12, 0.34; Table 3). Sensitivity analyses with indices derived from various subsets of the family finances index showed the same associations.

Results of Multivariate Regressions for Perceived Effects of Longest Leave From Work for Parents of Children With Special Health Care Needs: Chicago, IL, and Los Angeles, CA, November 2003 to January 2004

These ORs correspond to substantial differences in covariate-adjusted percentages for a perceived “very good effect” of leave on child physical health (45% of those receiving full pay vs 31% of those receiving no pay) and child emotional health (58% of those receiving full pay vs 45% of those receiving no pay), a perceived “good” or “very good effect” on parent emotional health (66% of those receiving full pay vs 53% of those receiving no pay), and perceived leave-related financial problems (26% of those receiving full pay and reporting ≥ 2 problems vs 63% of those receiving no pay).

Length of leave was significantly associated with 4 of the outcomes. Although the magnitude of the effect varied based on the length category, longer leaves were associated with a greater number of positive perceived effects on child physical and emotional health, a more negative perceived effect on job performance, and a greater number of reported financial problems (Table 3).

Other Factors

Parents with a nonemployed spouse were less likely than were parents with a full-time employed spouse to report that their leave helped their child's physical health (Table 3). Our sample was too small to support separate subanalyses by spouse's employment status. Parents who had not completed college were less likely than those who had completed college to report that leave positively affected their child's emotional health and negatively affected their ability to perform their job. The number of hospitalizations was not associated with any of the 5 outcomes.


Employed parents of children with special health care needs appear to face tradeoffs between taking leave for their child's illness and maintaining financial stability. Parents who received full pay during leave, however, consistently reported better consequences compared with those who received no pay: more positive effects on their child's physical and emotional health and their own emotional health and a less negative effect on finances. As employers and policymakers consider far-reaching changes to current leave policies, this study provides the first evidence that paid leave is associated with a variety of improved outcomes reported by parents.

Almost all parents reported that leave-taking was beneficial to their child's health, so much so that we needed to dichotomize the 2 child-health outcomes as “very good” versus “other” in the regressions. Although prior studies have not examined leave-taking's effects on child health, our finding is consistent with reports suggesting, although not definitively, that children tend to recover faster when parents are present to help care for them.4347 It is important to note, though, that because we selected children with special health care needs in higher-expenditure diagnostic groups, our sample intentionally represented children who were, on average, somewhat sicker than children with special health care needs in nationally representative samples.48,49

Most parents also reported that leave-taking had a positive effect on their own emotional health. Studies show that parents of children with special health care needs are more likely to suffer from psychological distress and conflicts over family responsibilities than are parents of healthy children5054; nearly half of such parents in one study reported psychiatric symptoms related to their child's illness.55 If parents' distress is exacerbated by work demands that limit parenting time, it is plausible that leave-taking would have a positive effect on parents' emotional health. Our data cannot address whether social support from friends and family might modify this effect. It is also unclear why 24% of parents reported a negative effect of leave on their emotional health. Possible reasons include stress caused by missing work or seeing their child suffer.

Although some parents said that their job performance benefited from taking leave, most believed that leave-taking had either a negative or neutral effect on their job performance. Researchers have hypothesized that leave leads to productivity improvements because of fewer family distractions.56 Our data, however, suggest that parents may experience challenges returning to work. Less-educated parents were less likely than were highly educated parents to report a negative effect on job performance, suggesting that challenges catching up may be particularly acute for more specialized positions less easily covered by others. Our sample had higher educational attainment than did a national sample from another study of parents of children with special health care needs,57 which was not unexpected, given that our sample was limited to employed parents. Future research would benefit from information on the specific nature of parents' jobs.

It is not surprising that parents reported leave-induced financial problems—in one survey, 78% of employees who needed leave for a family or medical reason reported being unable to afford the associated loss of income.10 Parents of children with special health care needs generally have lower income58 and experience a greater number of financial problems than do parents of healthy children.5,57 The National Survey of Children With Special Health Care Needs estimated that more than 20% of families of such children experience financial problems because of their child's condition.48 Our study, in which about half the parents received no or partial pay during leave, confirms that many parents of children with special health care needs sacrifice financially (e.g., use savings) to take leave.

Reported effects for the longest leave might vary with frequency of illness episodes. A single leave might have smaller reported effects if the corresponding illness episode were merely 1 in a long series of illnesses. Although we did not measure total number of illness episodes, we accounted for serious episodes by including number of hospitalizations as a covariate. The number of hospitalizations was not associated with any of the outcomes, suggesting that reported effects of leave did not diminish as the number of serious illness episodes increased.

By contrast, the effects of leave-taking appeared to be greater when leave was longer. Parents who took longer leaves reported that leave had a more positive effect on child physical and emotional health but a more negative effect on job performance and finances, relative to parents whose leave lasted less than 1 week. Length of leave was not associated, however, with parent emotional health; perhaps parents perceived leave-taking to be an emotionally delicate balancing act between their child's health needs and their job-related or financial obligations.

Paid leave may be able to substantially alter this balance. Paid leave was strongly associated with improvement in 4 of 5 outcomes. Although the association of paid leave with fewer reported financial problems is not surprising, our study, to our knowledge, is the first to link paid leave with improved perceptions of child physical and emotional health and parent emotional health. Parents who received full pay were perhaps better able to focus attention on their child's needs, to obtain additional health services and supports in the home or hospital, and to worry less about financial consequences of leave-taking; furthermore, full pay may indicate a more family-friendly workplace culture that provides greater emotional support during leave. We note, however, that about one quarter of parents receiving full pay still reported 2 or more financial problems, suggesting that even full pay may not entirely shield families from the costs of illness.


Several study design elements may qualify our conclusions. Although hypotheses were determined a priori, the testing of multiple hypotheses means the probability of a type 1 error (concluding that there is a difference when in truth there is none) across all tested hypotheses is greater than it would be for a single hypothesis. As in all observational studies, associations between paid leave and outcomes are not necessarily causal. For example, parents who believed that taking leave would benefit their children may have been more likely to take jobs with paid leave. With respect to the sample, parents who did not take leave because of lack of access to state- or employer-sponsored paid leave (and, thus, would have been included in the study had access been available) may have had a different perspective from parents who were included.

Finally, data sources other than parent reports might have resulted in different conclusions. As stated, however, parents' perceptions of improved child health in our study are consistent with prior research suggesting an association between parental presence during care and better child outcomes.4347 Moreover, our approach limited parental-report biases by inferring the effect of pay during leave analytically rather than asking parents directly about the effects of paid leave on the various outcomes. Regardless, parents' perceptions of leave's effects are inherently important; these perceptions will likely shape parents' future decisions regarding leave, childcare, and employment, as well as the introduction of any new leave policies or programs. Further qualitative and quantitative research on parents' perceptions of leave's effects, especially research examining how these perceptions may influence leave and employment decisions, would be helpful.


Our findings highlight the potential importance of paid leave options for parents of children with special health care needs and have implications for clinicians and policymakers. Informed clinicians can advise parents about considering leave in family health and employment decisions and advise that, although leave-taking might cause employment-related or financial strain, it might improve their child's health and their own emotional health. The American Academy of Pediatrics emphasizes parents' importance in promoting the health of ill children and urges clinicians to pursue a family-centered approach.59,60 Thus, when children are admitted to the hospital or families are being counseled about adapting to a child's chronic disease, clinical staff may be well-positioned to help parents learn about family leave options and strategies for balancing job demands and their child's needs.

Additional research could elaborate on the relationships we found between work leave and child and parent outcomes, as well as the impact of full pay during leave. In particular, it will be important to examine whether associations between our outcomes and predictors such as length of leave, need for leave, income, and gender might vary with pay during leave. One might hypothesize, for instance, that when leave is paid, associations between leave length and financial strain might diminish substantially and associations between leave length and child health might increase. If so, the impact of pay during leave could plausibly be even greater than the independent associations between pay during leave and outcomes reported in this article suggest. Analyses such as these would require substantially larger samples than ours.

Regardless, our findings may have implications for policymakers considering instituting paid-leave programs. Several states and the District of Columbia offer or will soon offer paid family-leave programs,1316 and other states and Congress are considering the issue.1721 Our findings indicate that receiving pay during leave might improve leave's effects on child physical and emotional health and parent emotional health while limiting its negative effect on finances, at least as perceived by parents. In addition, regardless of whether leave is paid, our results suggest that parents perceive time away from employment during their child's illness to be a critical contributor to child health.


This research was supported by the National Institutes of Health (grant R21 HD052586), the Centers for Disease Control and Prevention (grant CDC U48/DP000056), and The California Endowment.

We thank Children's Memorial Hospital in Chicago and Mattel Children's Hospital at the University of California, Los Angeles (UCLA) for providing administrative data for the study; the RAND Survey Research Group for data collection; the UCLA/RAND Work–Family Advisory Board for advice during questionnaire development; the UCLA/RAND Center for Adolescent Health Promotion and the Evanston Northwestern Healthcare Research Institute for administrative and research assistance; and Robert H. Brook for comments on a draft of the article.

Human Participant Protection

This study was approved by the institutional review boards of RAND, the University of California, Los Angeles, and Children's Memorial Hospital, Chicago.


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