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Center for the Advancement of Underserved Children, Department of Pediatrics, and Department of Epidemiology, Health Policy Institute, Medical College of Wisconsin, Milwaukee, Wisconsin; Children’s Research Institute, Children’s Hospital of Wisconsin, Milwaukee, Wisconsin
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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METHODS. We analyzed data for 38886 CSHCN <18 years of age in the National Survey of CSHCN, conducted from 2000 to 2002. Outcome variables included perceived satisfaction with care and ease of service use. Covariates included sociodemographic factors, insurance, interview language, condition severity and stability, adequacy of family-centered care measures, and having a personal doctor/nurse.
RESULTS. The prevalences of reported dissatisfaction with care and problems with ease of using services among parents of CSHCN were 8% and 25%, respectively. Black and Hispanic parents were significantly more likely than white parents to be dissatisfied with care (13% and 16% vs 7%) and to report problems with ease of service use (35% and 34% vs 23%). Hispanic/white disparities in satisfaction with care and ease of use of services disappeared only after multivariate adjustment for parental interview language. Black/white disparities in satisfaction with care disappeared after adjustments for adequacy of family-centered care measures, but black/white disparities in ease of using services persisted. The severity of the child’s condition, lack of insurance, parental interview in Spanish, and inadequate family-centered care were associated significantly with dissatisfaction with care and problems with ease of using health care services.
CONCLUSIONS. Policies and strategies that reduce language barriers, promote insurance coverage and family-centered care, and improve ease of use of services among minority CSHCN have the potential to reduce racial/ethnic disparities in satisfaction with care and to promote ease of use of services among families with CSHCN.
Key Words: children with special health care needs • patient satisfaction • language barriers • insurance • disparities • race • ethnicity • family-centered care
Abbreviations: CSHCN—children with special health care needs • NS-CSHCN—National Survey of Children With Special Health Care Needs • SCHIP—State Children’s Health Insurance Program
PATIENT SATISFACTION WITH care and ease of using health care services are important quality and access-to-care indicators and key measures for monitoring and evaluating the performance of health care systems.1,2 Satisfaction with care influences several health behaviors, including changing providers,3–5 adhering to treatment,6,7 changing health care plans,7,8 avoiding physician visits,9 and filing lawsuits.10 Satisfaction with care can vary according to practice characteristics, service organization, and site of care.11–15
Although there is an extensive literature on satisfaction with care, little is known about satisfaction with care among children with special health care needs (CSHCN), particularly minority CSHCN. Most prior research on patient satisfaction focused on adults and children in general, with limited attention to CSHCN. A number of those studies noted that adults and children of racial/ethnic minority groups, with and without special health care needs, are more likely than white patients to be dissatisfied with their care.16–19 Although CSHCN have greater use of health care services and more frequent encounters with the health care system,20–22 there continues to be little empirical work assessing racial/ethnic disparities in this population.23 Research on CSHCN had been hampered by the lack of nationally representative data on CSHCN, but recent studies used the National Survey of CSHCN (NS-CSHCN) to examine important issues for CSHCN, including the prevalence of CSHCN,24 access to medical homes,25 unmet needs,26,27 and language and access to care.28 One analysis documented significant racial/ethnic disparities in satisfaction measures for family-centered care,24 but no study to date has examined such disparities in either overall parental satisfaction with care or ease of using health care services among parents of CSHCN.
The aims of this study were to examine whether there are racial/ethnic disparities in parent-reported satisfaction with care and ease of using health care services among CSHCN and to identify factors that contribute to these disparities among parents of CSHCN. Considering the challenges faced by families of CSHCN and the added difficulties experienced by minority children in our society,16–19 we hypothesized that minority parents of CSHCN would be more likely than white parents to be dissatisfied with care and to report that health care services for their children are not easy to use. We also hypothesized that controlling for insurance coverage, poverty status, interview language, and adequacy of family-centered care factors would reduce racial/ethnic disparities in satisfaction and ease of service use among parents of CSHCN.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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The weighted National Council of American Survey Research Organizations response rate was 61%; it was calculated as the product of the household resolution rate (86.5%), the household-level age screener completion rate (94.9%), the household-level special needs screener completion rate, and the child-level special needs interview completion rate (97.6%). Additional details on the NS-CSHCN survey methods and weighting procedures are available elsewhere.29 The survey contained questions regarding health and functional status, insurance coverage, adequacy of coverage, access to and utilization of services, care coordination, and adequacy of family-centered care.29 The parent or legal guardian most knowledgeable about the child was the primary respondent in each household.29 Henceforth, all references to satisfaction with care or ease of service use refer to parent/guardian reports or perceptions. Approximately 2% (n = 807) of the interviews were conducted in Spanish using a Spanish questionnaire that was developed by translating the English questionnaire into Spanish and then translating it back into English; independent contractors performed the 2 translation components.29
Study Variables
Dependent Variables
The main dependent variables in this study were parent-reported overall dissatisfaction with care and difficulties with ease of using health care services. Satisfaction with care was assessed with the following question: "Thinking about [your child’s] health needs and the service (he/she) receives, how satisfied or dissatisfied are you with those services?" The 4-point Likert scale responses (very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied) were dichotomized as dissatisfied (somewhat/very dissatisfied) or not dissatisfied (very/somewhat satisfied), consistent with prior studies.32,33 Overall ease of using health care services was assessed with the following question: "Thinking about the services [your child] needs, are those services organized in a way that makes them easy to use?" The 4-point Likert responses (never, sometimes, usually, or always) were dichotomized as problems in ease of use of services (usually/always) or no problems (sometimes/never).
Independent Variables
The child’s race/ethnicity was defined as non-Hispanic white, non-Hispanic black, or Hispanic, based on parental report (herein the terms white, black, and Hispanic will be used as per the terms used in the NS-CSHCN). Other independent variables included child characteristics (age in years, gender, residence, condition stability, and condition severity), socioeconomic characteristics (maternal educational attainment and poverty status), access factors (insurance coverage and having a personal doctor or nurse), interview language (English versus other languages), and family-centered care factors. The child’s condition status was a categorical variable based on parental assessment of whether the child’s condition changes all the time, changes once in a while, or is stable (these were the 3 main options, in addition to "none of the above," "don’t know," and "refused this question," available for this question in the NS-CSHCN). The severity of the child’s condition was measured on a Likert scale ranging from 0 to 10, with 0 indicating the mildest severity and 10 the greatest severity.
Maternal educational attainment was coded as less than a high school graduate, high school graduate, some college, or college graduate or higher. Poverty status was based on federal poverty guidelines for a family of 4 in the year 200129 and was classified in this study into 3 percentage categories (0–99%, 100–199%, or 
200%). A dummy variable was used to indicate "missing" poverty data for 
9% (n = 3406) of CSHCN. Access factors included insurance coverage (private, public, or uninsured) and having a personal doctor or nurse (yes/no). Children were classified as uninsured if they did not have insurance coverage at the time of the interview. Residence was dichotomized as metropolitan statistical areas versus nonmetropolitan statistical areas.
We follow the American Academy of Pediatrics definition of family-centered care as a system of service planning, delivery, and evaluation of care that is grounded in collaborative relationships of patients, families, and health care providers.34 In this study, adequacy of family-centered care was assessed by using parental ratings of the following 5 NS-CSHCN measures: (1) time spent with the provider, (2) listening skills, (3) sensitivity to family customs and values, (4) information provided, and (5) partnership with the family.29 These 5 measures are referred to as adequacy of family-centered care measures or factors. The amount of time spent with the provider was assessed with the following question: "In the past 12 months/since [your child’s] birth, how often did [your child’s] doctor or other health care providers spend enough time with [your child]?" Listening skills were assessed with the following question: "In the past 12 months/since [your child’s] birth, how often did [your child’s] doctor or other health care providers listen carefully to you?" Provider sensitivity to values and customs was measured with the following question: "When [your child] is seen by doctors or other health care providers, how often are they sensitive to your family’s values and customs?" Adequacy of information given to families by the provider was assessed with the following question: "Information about a child’s health or health care include things such as the causes of any health problems, how to care for the child, and what changes to expect in the future. In the past 12 months, how often did you get the specific information you needed from [your child’s] doctor and other health care providers?" Assessment of partnership with providers was based on the following question: "In the past 12 months, how often did [your child’s] doctor or other health care provider help you feel like a partner in [your child’s] care?" The 4-point Likert responses (never, sometimes, usually, or always) for family-centered care were dichotomized as never/sometimes versus usually/always.
Analyses
Bivariate analyses and multivariate logistic regression modeling were used to assess associations between race/ethnicity and satisfaction with care and ease of using health care services. Sample weights are incorporated in all estimates presented. Multivariate analyses were used first to examine the association between race/ethnicity and each outcome, after adjustment for relevant covariates, and second to examine the potential contributions of other independent variables to satisfaction with care and ease of using health care services. Only variables that were significant (P < .05) in bivariate analyses were included in multivariate analyses. Tests of colinearity were performed in the multivariate analyses, but no substantial correlations were found among independent variables.
Independent variables were included in the analyses in a sequential manner, beginning with a base model (model 1) containing only the race/ethnicity variable, followed by a model (model 2) containing other child characteristics (age in years, condition status, and condition severity). Model 3 added socioeconomic factors (maternal educational attainment and poverty status), and model 4 added access-to-care factors (insurance coverage and having a personal doctor or nurse). We added interview language in model 5, followed by an additional model that included family-centered care factors (model 6). The final model for dissatisfaction with care added perceived organizational ease of using health care services (model 7). In addition, to examine the influence of language barriers on satisfaction with care and ease of using health care services among Hispanic subjects, we performed analyses stratifying Hispanic parents into 2 groups, those interviewed in English and those interviewed in Spanish.
From the initial 38866 respondents, we excluded children classified as multiracial (n = 1366) and other racial groups (n = 1262), which resulted in an overall sample of 36238 respondents. The bivariate and multivariate analyses were limited to subjects who responded to the questions on overall satisfaction with care (n = 14368) and ease of service use (n = 14203). All analyses were conducted with Stata 8.0 SE software (Stata Corp, College Station, TX), to adjust for the complex survey design. Comparisons of discrete categorical variables were performed with 
2 tests of independence, and the t statistic was used to compare means of continuous variables between groups.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Multivariate Analyses
Satisfaction With Care
Compared with parents of white CSHCN, parents of racial/ethnic minority CSHCN had significantly greater unadjusted odds of being dissatisfied with care (Table 3). These disparities diminished slightly after adjustment for other child characteristics (age, condition status, and condition severity) but remained significant (Table 3, model 2). The addition of socioeconomic status (maternal education and poverty status) and access-to-care (insurance and presence of a personal doctor or nurse) factors reduced but did not eliminate the minority/white disparities in dissatisfaction with care (Table 3, models 3 and 4). The Hispanic/white dissatisfaction disparity disappeared after adjustment for interview language, whereas the black/white dissatisfaction disparity persisted (Table 3, model 5). Black/white disparities in dissatisfaction with care disappeared only after adjustment for family-centered care factors (Table 3, model 6). Several measures of adequacy of family-centered care were associated independently with dissatisfaction with care, including inadequate time spent with the provider, the amount of information given by providers to families, provider listening skills, and partnership with families. These factors also seemed to account for much of the black/white disparity in dissatisfaction with care.
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Ease of Using Health Care Services
Black and Hispanic parents had significantly greater unadjusted odds, compared with white parents, of reporting that services for their CSHCN were not easy to use (Table 4, model 1). These disparities diminished slightly but persisted after adjustment for other child characteristics (Table 4, model 2), socioeconomic status (Table 4, model 3), and access factors (Table 4, model 4). Hispanic/white disparities in ease of using services disappeared after adjustment for interview language (Table 4, model 5). Black/white disparities were attenuated slightly with inclusion of family-centered care factors but persisted (Table 4, model 5). Even after adjustment for all relevant covariates, black parents still had significantly greater odds, compared with white parents, of reporting that services were not easy to use.
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Parental Interview Language
Hispanic parents interviewed in Spanish had 6 and 3 times greater unadjusted odds than white parents of being dissatisfied with care and reporting that services for their child were not easy to use, respectively (Table 5). In contrast, Hispanic parents interviewed in English did not differ statistically from white parents in both outcomes, after multivariate adjustments. Hispanic parents interviewed in Spanish still had almost 3 times greater adjusted odds of being dissatisfied with care than white parents, but disparities in ease of service use did not persist after adjustments (Table 5).
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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A key finding of this study is the strong influence of interview language on disparities in satisfaction and ease of service use among Hispanic parents of CSHCN. Interview language is a crude proxy for language barriers. Language problems are major access barriers for Latino children35,36 and have been linked to fewer physician visits37 and substantially lower satisfaction with care among those who need but do not receive interpreters.38 The present study underscores the importance of addressing the language needs of Hispanic families with CSHCN. The findings are consistent with prior research that documented lower satisfaction with provider-patient communication among Spanish-speaking parents, compared with English-speaking parents.16,18,19,39 Weech-Maldonado et al,39 for example, found that minority parents were less satisfied with pediatric care than white parents and that much of the dissatisfaction with care was associated with language barriers. The findings are also consistent with prior research that associated parental survey interview language with poor child health status40 and lower odds of having a usual source of care among children.41 In this study, Hispanic parents interviewed in Spanish had almost 3 times greater adjusted odds of dissatisfaction with care, compared with white parents. These findings indicate that efforts to address disparities in dissatisfaction with care and ease of using health care services among parents of Hispanic CSHCN will need to identify and to address the language needs of Hispanic families with CSHCN who have limited English proficiency. Potential strategies for addressing these language needs may include incorporating and integrating cultural competence curricula into both medical training and continuing medical education and increasing the availability of trained medical interpreter services and bilingual staff members.38,39
The study findings also suggest that providing families of CSHCN with adequate family-centered care may improve satisfaction with care and the ease of using health care services. Among parents of black CSHCN, dissatisfaction with care was associated strongly with measures of inadequate family-centered care, a finding consistent with prior research with general pediatric and adult populations that showed that greater patient involvement in health care decision-making and improves patient-provider communication improved patient satisfaction and outcomes.10,42–46 Family-centered care factors, such as adequate listening, respect, trust, and participatory decision-making, have been linked to greater satisfaction with care among black adults, compared with other racial/ethnic groups.42,43 One study16 revealed that time spent with the provider and satisfaction with information given by the provider were associated with parental satisfaction with care for young children and that a dose-response relationship existed between visit duration and patient satisfaction with care. Cultural competency training,43 increasing the number of minority providers,43 and enhancing patients’ trust of providers and the health care system47 have the potential to improve 2 components of family-centered care, namely, patient-provider communication and participatory decision-making.
The strong association of the several measures of family-centered care with dissatisfaction with care and perceived ease of using health care services suggests that efforts to address or to improve these outcomes need to ensure that all CSHCN, and particularly minority CSHCN, receive adequate family-centered care. Prior research showed that increasing patients’ communication and participatory skills led to improved communication with health care providers and better overall health outcomes.48,49 Street50,51 found that patients’ communication skills, including assertiveness, willingness to ask questions, expressing concerns, and providing details about their conditions, influence physician behaviors and participatory style. Interventions focused on increasing patient-provider communication skills and participatory decision-making could have the potential to increase satisfaction with care, improve ease of service use, and decrease health disparities among parents of CSHCN.43
Parental perceptions of family-centered care have a substantial impact on both dissatisfaction with care and ease of using health care services. All measures of family-centered care, except for sensitivity to family values/culture, were associated strongly and independently with dissatisfaction and ease of health care use. These findings lend support to the concept of family-centered care and highlight the potential significance and contribution of family-centered services to reducing health disparities. The findings also support other studies52,53 that suggested the need for systems and policy changes to make family-centered care the "best practice approach" for caring for CSHCN. Promoting and providing family-centered care has the potential not only to reduce health disparities but also to enhance the quality and performance of health care systems for families of CSHCN.
It is not clear why black/white disparities in ease of using health care services for CSHCN persist after multivariate adjustment. A core principle of family-centered care system is "flexibility in organizational policies, procedures, and provider practices so services can be tailored to the needs, beliefs, and cultural values of each child and family."34 It may be that other unmeasured organizational and practice factors, such as provider and patient attitudes, bias or discrimination, transportation barriers, waiting times, and limited availability of providers and specialized services in minority communities, may contribute to black/white disparities in ease of using health care services. These findings suggest the need for additional study of how to make health care services easier to use for black CSHCN and their families.
Lack of insurance coverage was associated independently with both dissatisfaction with care and problems with ease of using health care services. Given that minority CSHCN are more likely to be poor and uninsured or publicly insured and that most poor uninsured children are eligible for public insurance,54 our findings indicate the need for enhanced Medicaid and State Children’s Health Insurance Program (SCHIP) outreach efforts to increase enrollment and retention of eligible poor and minority CSHCN.55,56
Publicly insured CSHCN had parental satisfaction levels equivalent to those of privately insured CSHCN and actually reported significantly greater ease of use of services, compared with privately insured CSHCN. These findings highlight the importance of public insurance coverage for CSHCN. Our data indicate that 22% of CSHCN in the US (9 million) are covered by public insurance, with more than one third of poor CSHCN being covered through public programs. The data suggest that continued federal and state funding for Medicaid and SCHIP is critical for CSHCN and especially for poor and minority CSHCN. The findings also suggest that reductions in current Medicaid and SCHIP funding may result in greater dissatisfaction with care and difficulties with ease of using services for black and Hispanic CSHCN.
Certain study limitations should be noted. The data are based on parental self-report and therefore may be subject to recall and reporting bias. Because the adequacy of family-centered care measures are based on recall of the past 12 months, it is possible that parents with more-recent encounters with providers are more likely to report accurately their satisfaction with care, compared with those with more-remote encounters. Furthermore, when parent’s reports are used as proxies for children’s self-reports, some incongruence is possible in assessments of health care services and health status.57–60 This study also did not examine disparities within subcategories of CSHCN (ie, those classified as having special needs solely because of their dependence on medication, compared with those with complex conditions that require medication and other types of services). In a separate article, we plan to examine racial/ethnic disparities in satisfaction and ease of service across these different subcategories of special health care needs. Finally, patient satisfaction is a multidimensional construct that often is measured with more comprehensive instruments. The single overall satisfaction item in NS-CSHCN does not permit identification of specific aspects of care associated with patient satisfaction.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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FOOTNOTES |
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Address correspondence to Emmanuel M. Ngui, DrPH, Center for the Advancement of Underserved Children, Department of Pediatrics, Medical College of Wisconsin, 8701 Watertown Plank Rd, Milwaukee, WI 53226. E-mail: engui{at}mcw.edu
This work was presented as a poster at the annual research meeting of AcademyHealth;June 27, 2005; Boston, MA.
The authors have indicated they have no financial relationships relevant to this article to disclose.
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REFERENCES |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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