Respite Care for Children With Special Health Care Needs FREE

Children with special health care needs (CSHCN) are those 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 There are an estimated 9.3 million CSHCN in the United States, accounting for 14% to 18% of all children nationwide.^2- 3

Care of CSHCN strains the physical, emotional, mental, financial, and social well-being of caregivers.^4- 6 Families are the largest providers of long-term care for children with disabilities.⁷ Long-term medical care of children with complex conditions can be overwhelming and can lead to poor psychological outcomes in caregivers.^8- 13 To provide optimal care for CSHCN in the community, families need adequate psychological and social support. The American Academy of Pediatrics recommends support services such as respite care for families of CSHCN.¹⁴

Respite care seeks to decrease the burden on caregivers by giving them a break in caring for their CSHCN. Parents rank respite care as one of the most needed services for families caring for CSHCN,^15- 16 and studies suggest that respite care improves well-being of parents/caregivers of CSHCN.^17- 19 Yet, respite needs of caregivers of CSHCN are frequently unmet.^20- 21 Population-based studies with a primary focus on respite care are lacking. Using a large nationally representative sample of CSHCN, we sought to determine the sociodemographic and health status characteristics that are associated with need for respite care and unmet needs for respite care among CSHCN.

We used cross-sectional data from the 2001 National Survey of Children With Special Health Care Needs (NSCSHCN), which was sponsored by the Maternal and Child Health Bureau.²² The survey was conducted by the National Center for Health Statistics between October 2000 and April 2002 in the United States. The survey used a random-digit-dial sample of households with children younger than 18 years from each state and the District of Columbia.²² All survey data are publicly available at the National Center for Health Statistics Web site.²³

Respondents in this survey were parents or guardians who were most knowledgeable about the child's condition. The response rate was 61%. The sample is weighted for nonresponse, telephone lines, and 2000 census characteristics. Children were identified as having special health care needs using the CSHCN Screener, which is a validated tool to identify CSHCN.^22,24 The CSHCN Screener has 14 items inquiring about a condition that has lasted or is expected to last a year or longer and results in the need for medical and other services, special therapies, prescription medicines, limitation of ability, or an emotional, behavioral, or developmental condition needing counseling.²⁵ Prior studies have described the characteristics of CSHCN in the NSCSHCN.^6,26- 27

“Respite care need” and “unmet respite care” were the dependent variables of interest. Both were dichotomous variables. Respite care need was derived from the question in the survey that asked whether the caregiver or his or her family needed respite care in the 12 months prior to the survey (response options: yes/no). Respite care was further explained to families as having someone care for the child so that the caregiver could do other things. Respondents who reported a need for respite care were asked whether they received all the respite care that they needed (response options: yes/no); those who responded no to this question were considered to have an unmet respite care need. Finally, respondents who reported unmet respite care needs were asked if this stemmed from lack of availability/transportation problems, cost, health plan problem, inconvenient time, or other reasons.

Age, sex, metropolitan status of residence, maternal education, income level of the household, insurance type, race/ethnicity, functional limitation of the child, and stability of the child's condition were the independent variables. All the independent variables were categorical. We categorized age into younger than 6 years, 6 years through 11 years, and 12 through 17 years. Maternal education level was categorized into high school or less and more than high school. Income level of the household was categorized into income less than 100% of the federal poverty level (FPL), 100% to 199% of the FPL, 200% to 399% of the FPL, and 400% of the FPL or more. Insurance type was classified into uninsured/had gaps in insurance in the year prior to the survey, public, private, and other insurance types. Race/ethnicity had 4 categories: non-Hispanic white, non-Hispanic black, Hispanic, and other. We derived the functional limitation variable from 2 questions that asked how often and how much the child's condition affects his or her ability to do things his or her peers could do and categorized it into severe, some, and no limitation. Stability of the child's condition had 3 categories and was derived from the question that asked whether the child's health care needs changed all the time (unstable), once in a while (less stable), or was usually stable.

We performed bivariate analyses between the dependent variables (respite care need and unmet respite care) and the independent variables. We used Pearson χ² test to examine the associations between categorical variables. In multivariate analyses, we examined the association of independent variables with respite care need and unmet respite care in 2 logistic regression models. To obtain population-level estimates, appropriate survey weights were used in the analyses. A P value of less than .05 was considered to be statistically significant. Stata Intercooled version 8.2 (StataCorp, College Station, Texas) was used for statistical analyses. The institutional review board of Wake Forest University Health Sciences approved the study.

Of the 38 866 participants in the NSCSHCN, 38 831 (99.9%) responded to the question from which the “respite care need” variable was derived. Of the respondents, 3178 (8.8%) reported a need for respite care in the 12 months prior to the survey.

The results of bivariate analysis of respite care need with sociodemographic and health status factors are presented in Table 1. Need for respite care was higher among CSHCN of younger age, low maternal education, low-income households, and minority race/ethnicity. The CSHCN with private insurance were less likely to report need for respite care compared with CSHCN who were uninsured/with insurance gaps and those with public insurance and other insurance types. Respite care need increased as functional limitations of CSHCN increased, and CSHCN with unstable health conditions were most likely to report need for respite care.

In multivariate analysis, age, insurance type, functional limitations, and stability of the child's condition were significantly associated with the need for respite care (Table 2). Children younger than 6 years were 3 times as likely and those between 6 through 11 years of age were twice as likely to need respite care as children 12 through 17 years of age. Children with private insurance were half as likely as those without health insurance/with gaps in insurance to need respite care. There was no difference between children who were uninsured/had insurance gaps and those with public insurance in the need for respite care. Children with some functional limitations and those with severe limitations were 2 and 4 times more likely to report respite care need, respectively, than those without functional limitation. Compared with caregivers of CSHCN with a stable health condition, caregivers of those whose health condition was unstable were twice as likely to need respite care. Maternal education, household income, and race/ethnicity were not associated with respite care need in multivariate analysis.

Twenty-four percent (774 of 3163 respondents) of caregivers of CSHCN who needed respite care reported that their needs were unmet. In bivariate analysis, CSHCN whose mothers had more than high school education had greater unmet needs for respite care than those whose mothers had high school education or less. Thirty-three percent of CSHCN who were uninsured/had gaps in insurance, 24% of those with private insurance, and 22% of those with public insurance had unmet needs for respite care. As functional limitations of CSHCN increased, the proportions of CSHCN with unmet respite care need increased. While 20% of CSHCN with stable health conditions had unmet respite care needs, this was doubled for those whose condition was unstable (Table 3).

In multivariate analysis, maternal education, insurance type, child's functional limitation, and stability of the child's condition were associated with unmet respite care needs (Table 4). The CSHCN with public insurance or other insurance were half as likely as those who were uninsured/had insurance gaps to report unmet respite care needs. There was no difference between CSHCN who were uninsured/had gaps in insurance and those with private insurance in unmet respite care needs. The CSHCN with severe functional limitations were 6 times as likely and those with some limitations were 3 times as likely as those with no limitation to have unmet respite care needs. The CSHCN with a health condition that was unstable were twice as likely to report unmet respite care needs as those with a stable health condition. However, there was no difference in unmet respite care needs between those with stable or less stable conditions.

Of those who reported unmet respite care needs, 767 described the reasons for unmet respite care needs. Twenty-six percent reported lack of availability or transportation problems, 22% reported too much cost, 13% reported health plan problem, 7% reported that time was not convenient, and 18% listed other unspecified reasons.

To our knowledge, this is the first population-based study to describe respite care needs and unmet needs for respite care among families with CSHCN. Our study shows that 9% of CSHCN need respite care; of those, 25% do not receive such care.

In a study by Liptak and Revell,¹⁶ respite care was rated as the most important service needed by parents of CSHCN. The lower proportion of families reporting respite care need in our study is probably because of the broad definition used to identify CSHCN in this study. The CSHCN Screener identifies children with mild conditions (eg, asthma, allergies) to very severe conditions (eg, mental retardation, autism).²⁵ Previous studies in which the sample included children with very complex health conditions showed a higher prevalence of respite care need than observed in this study.²¹ Among children with disabilities receiving Supplemental Security Income (a more homogeneous population than ours), 25% reported need for respite care.²¹

Other reasons for low reported respite care need could be that parents may feel that seeking respite care is “giving up” on the child, or parents may lack awareness about respite care as a support service and hence not perceive a need for it.²⁸ Another possibility is the understanding of the term respite care. For example, in the most recent NSCSHCN (2006), caregivers were asked whether they needed respite care but not told what that meant.²⁹ This might have accounted for the lower proportion of respondents reporting respite care needs from the 2001 to 2006 surveys (9% vs 4%).³⁰ Future studies should evaluate whether caregivers' understanding of the term respite care varies by how the question is asked in surveys. A reliable and valid measure of respite care should be identified.

Parenting stress associated with caring for CSHCN decreases over time as caregivers are better able to cope with their child's health condition.³¹ This could account for our observation that caregivers of young CSHCN were more likely to report respite care need. Another possible explanation is that the child's health condition could improve over time and make it more manageable for caregivers.

In our study, CSHCN with private insurance were less likely to need respite care. This observation probably reflects the overrepresentation of CSHCN with complex conditions in the public insurance group because of their eligibility for public insurance. Because of the cross-sectional nature of the NSCSHN, it is not possible to evaluate whether greater respite care needs in CSHCN result in caregivers having to stop work and consequently becoming eligible for public insurance. The association between insurance status and need for respite care is complex and warrants further evaluation.

The CSHCN with functional limitations and unstable health conditions needed more respite care. The increased caregiving demands on the families of CSHCN with severe functional limitations could make these families report greater need for respite care. Prior studies show that families of children who have conditions with unpredictable courses, such as cystic fibrosis and sickle cell disease, often cause considerable psychological distress in families.^10,12 Our study provides further evidence that caring for CSHCN with unstable health conditions can cause substantial stress on the family.

The American Academy of Pediatrics recommends that support systems are in place for caring for CSHCN.¹⁴ Yet, our study shows that the respite care needs of 1 of 4 families of CSHCN are not met. This translates to approximately 200 000 families with unmet respite care needs in the United States. This large unmet respite care need is concerning. With advances in technology, more and more children with complex and life-threatening conditions are surviving longer than in the past.³² It is important to ensure adequate support systems for the family to care for their children for such prolonged periods.

The observation that maternal education was related to unmet respite care needs is intriguing and consistent with a previous report of unmet supportive services for children with disabilities.³³ It is possible that mothers with higher education are knowledgeable about the service systems and perceive services as unsatisfactory. Alternatively, mothers with poor education could have other family and social support systems unavailable to mothers with higher education.^34- 35

Our study shows that CSHCN with public insurance have far less unmet respite care need than those with private insurance and uninsured/had insurance gaps. This is probably because many private insurance plans are not comprehensive enough to provide support services such as respite care for CSHCN. In this time of intense debate about expanding public insurance for children, our study provides further evidence for the benefits of public insurance over private insurance in providing support services for CSHCN. Future studies should explore how state-level policies impact respite care provisions for CSHCN.

Our finding that CSHCN with severe functional limitations have the greatest unmet respite care needs is consistent with a previous report of very high unmet respite care needs (75%) among children with disabilities receiving Supplemental Security Income.²¹ Needs of children with very complex conditions may be so high that there may not be adequate personnel to provide respite care, or their conditions make it difficult to access these services. The unpredictable nature of unstable health conditions may make it difficult for parents to find appropriate providers when necessary. It is important to evaluate the reasons for unmet respite care need for CSHCN with functional limitations and unstable health conditions.

In qualitative studies, parents report lack of availability of respite care providers as a barrier to access respite care.¹⁰ While the nature of the NSCSHCN did not permit adequate exploration of the reasons, we found that at least one-fourth of those who had an unmet need reported lack of availability or transportation problems as the reason for unmet respite care needs.

There are certain limitations to this study. First, the interpretation of what constitutes respite care need and whether the need is met can vary by characteristics of the respondents. There were differences in the proportion of CSHCN reporting need for respite care between the 2001 and 2006 NSCSHCN. The differences in how the respite care variable and some of the confounding variables were defined in the 2001 and 2006 NSCSHCN preclude us from making direct comparisons between the 2 surveys. Second, unmeasured confounding factors may be associated with respite care need and unmet respite care. For example, data on single-parent families, presence of other children in the family, and employment status of the caregivers are not available in this data set. Next, the data set lacks information on the type of respite care needed (location in home or out of home; duration and period of respite). There may be variation among communities in the availability of respite care resources, which cannot be determined from a national survey. Respite care need may vary by medical condition; this information is not available in the 20001 NSCSHCN. Future studies should evaluate respite care need and unmet respite care needs by medical condition; this information is available in the 2006 NSCSHCN. Finally, since this is a cross-sectional study, causality cannot be inferred in the associations that we observed between sociodemographic and health status factors and the respite care need and unmet respite care need.

To our knowledge, this is the first study to describe information on respite care for CSHCN at a population level. Results from this study inform us about the subgroups of CSHCN who need respite care. This study has also identified disparities among CSHCN in access to respite care. This information will help to plan programs for CSHCN. Health care providers should ask families of CSHCN about their respite care needs and provide appropriate information on existing resources. Communities and states should identify existing support systems for CSHCN and their families and explore ways to improve these systems. Future population-based studies should determine whether The Life Span Respite Care Act of 2006 (passed by the US Congress in 2006 to assist family caregivers to access affordable respite care³⁶) has decreased unmet respite care needs of CSHCN.

Correspondence: Savithri Nageswaran, MD, MPH, Department of Pediatrics, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157 (snageswa@wfubmc.edu).

Accepted for Publication: August 29, 2008.

Financial Disclosure: None reported.

Previous Presentation: This work was presented in part at the Pediatric Academic Societies' Annual Meeting; May 7, 2007; Toronto, Ontario, Canada.

Additional Contributions: Karen Klein, MA, edited the manuscript.