BACKGROUND. During the past 2 decades, family-centered care has evolved as the standard of care for children with special health care needs. A major principle of family-centered care is a strong partnership between the family and provider, working together to address issues and barriers to accessing comprehensive care and related services. The federal Maternal and Child Health Bureau defines a positive family-provider partnership as a core program outcome. Our objective was to assess the extent to which families of children with special health care needs feel as though they are treated as partners in decision-making by their doctors.
METHODS. We analyzed the 2001 National Survey of Children With Special Health Care Needs, a nationally representative telephone survey of caretakers for 38866 children with special health care needs. Bivariate and multivariate statistical methods were used to assess the frequency of meeting the partnership core outcome, as well as the demographic and socioeconomic predictors of meeting core outcome. We also examined the effect of partnership on indicators of access and well-being for children with special health care needs.
RESULTS. Among children with special health care needs, 85.8% of families reported usually or always feeling like a partner in their child's care. However, living in poverty, minority racial and ethnic status, absence of health insurance, and depressed functional ability placed children with special health care needs and their families at elevated risk of being without a sense of partnership. We found that sense of partnership was associated with improved outcomes across a number of important health care measures, including missed school days, access to specialty care, satisfaction with care, and unmet needs for child and family services.
CONCLUSIONS. Results of the survey demonstrated that whereas most families of children with special health care needs feel they are partners in the care of their child, further work is needed, particularly for poor, uninsured, and minority children, as well as those with functional limitations. The survey results also demonstrate the importance of partnership; children whose care met the partnership core outcome experienced improved access to care and well-being.
- children with special health care needs
- National Survey of Children with Special Health Care Needs
- family centered care
- family provider partnerships
Based on the recognition of the critical role that families play in the development and nurturing of their children, family-centered care has evolved as the standard of care for all children, including children with special health care needs (CSHCN). In 2005 the federal Maternal and Child Health Bureau (MCHB) implemented an initiative to develop and promulgate a new definition of family-centered care and a set of accompanying principles, which reinforces the importance of family-provider partnership:
Family-centered care assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-centered care is the standard of practice which results in high quality services… The foundation of family centered care is the partnership between families and professionals.1
Because CSHCN and their families often require a range of services, these family-provider partnerships are especially critical2 for ongoing communication, information sharing, and joint decision-making. Health services, for example, include health education and health promotion; preventive and primary care, including routine screening for impairments of vision, hearing, speech, and language and assessment of physical and psychosocial milestones; specialized diagnostic and therapeutic services; and habilitation and rehabilitation services. Early intervention services are necessary as well, as are educational, vocational, and mental health services and support services for children and their families. Enabling services, such as transportation and child care, are necessary to ensure access to care. Transition services are needed to assist in the progression from adolescent health care to adult services and from school to work.
Families continuously face the challenge of obtaining and coordinating the primary and special services that their children require. Families must navigate a variety of organizations and providers and often face geographic and financial barriers to care. Differing eligibility criteria, duplication and gaps in services, inflexible funding sources, and poor coordination among service sectors are some of the barriers consistently reported.3 Primary care practitioners in the community are often uncomfortable providing care to children with complex needs, and they seldom have time to coordinate the variety of resources that families need. Poor communication between families and providers and cross-cultural misunderstandings are additional concerns for families and providers.4
Many of these issues can be resolved only through the development of organized systems of care that crosscut agencies and service providers in a fashion that addresses the needs of families. The MCHB is seeking to respond to this challenge by articulating and fostering achievement of a set of 6 core elements that constitute community-based systems of services for CSHCN and their families. This systems model of care, designed in part to enhance the family's role in decision-making and partnership, is reflected in legislation (Title V of the Social Security Act), Healthy People 2010 Objectives,5 the President's New Freedom Initiative,6 and MCHB core program outcomes7: (1) families of CSHCN partner in decision-making at all levels; (2) children have access to comprehensive health and related services through the medical home; (3) children have early and continuous screening, evaluation, and diagnosis; (4) families and children have adequate public and/or private financing of needed services; (5) community services are organized so that families can use them easily and be satisfied with the services they receive; and (6) youth receive the services and supports necessary to transition to all aspects of adult health care, work, and independence.
Previous articles in Pediatrics have described progress in meeting the core program outcomes related to the medical home, health insurance and financing, and the transition to adulthood.8–10 This article uses the 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) to assess the status of the first core outcome: whether families of CSHCN feel as though they are treated as partners in decision-making by their doctors. This sense of partnership with doctors is but 1 level of partnerships that families may desire: other examples include partnerships with policy-makers and the research community. However, this article will highlight partnerships between families and their providers. Specifically, we examine family perspectives on how well physicians are partnering with them, the demographic and other correlates of sense of partnership, and how sense of partnership impacts CSHCN and their families. Originally this core outcome included a service satisfaction component. However, this component has been moved to core outcome 5: “Services for CSHCN are organized so families can use them easily and are satisfied with the overall care experience.”
The 2001 NSCSHCN is a component of an ongoing and longitudinal monitoring strategy involving multiple evaluation procedures to assess progress in providing family-centered, community-based, coordinated care for CSHCN.11 The survey was developed and launched over a 3-year period beginning in 1999 as a partnership between the federal MCHB and the National Center for Health Statistics. It yielded prevalence estimates of CSHCN across several domains: health and functional status; access to care, care coordination, and satisfaction with care; insurance coverage; impact of caring for a CSHCN on the family; and demographic information about the sample child, respondent, and household.12
The NSCSHCN is a random digit-dialing survey based on the sampling frame of the National Immunization Survey and the State and Local Integrated Telephone Survey mechanism. Candidate telephone numbers were selected by first eliminating numbers determined to be nonresidential or nonworking and calling the remaining numbers to identify households with children <18 years of age. All of the children in a household were screened for special health care needs, but only 1 child was randomly sampled to be the subject of the in-depth questionnaire when a household contained multiple CSHCN. The targeted sample size was 750 CSHCN per state and the District of Columbia. A total of 196888 households with 373055 children were screened, and 38866 special needs interviews were completed. The interview completion rate was 97.6%, and the national weighted response rate was 61% (ranging from 53.3% to 72.0% across states).
The survey was conducted using a computer-assisted telephone interview data collection system as a module of the National Immunization Survey such that the 2 questionnaires were integrated into a single interview. A complex sample design involving clustering of children within households and stratification of households within states was used to obtain data for this survey. Sampling weights are required to produce estimates that are representative of children nationally and within each state. Because of the complex design, stratum identifiers and primary sampling unit codes were used in addition to the sample weights to estimate the complex sample variances.
The survey was implemented in 3 stages. First, demographic information, including age, gender, and race/ethnicity, was collected for all of the children <18 years. Next, the CSHCN screener was administered to identify CSHCN. The definition of CSHCN used by the MCHB is “those 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.”2 A special health care need was operationally defined by the presence of a condition that has lasted or would be expected to last ≥1 year and that resulted in ≥1 of the following: using or needing more medical care, mental health services, or educational services than are generally required by other children of the same age; using or needing prescription medicines; having limitations in the ability to do things other children of the same age do; using or needing special therapy (ie, physical, occupational, or speech therapy) or assistive devices; or using or needing emotional, developmental, or behavioral treatment or counseling.13
When 1 of the above conditions was met, a comprehensive interview was administered to the parent or legal guardian who was most knowledgeable about the health and health care of the child with special health care needs. In 79% of the cases, the mother was the respondent, whereas the father or other relatives or guardians were respondents in 17% and 4% of the cases, respectively. The mean length of the special needs interview was ∼19 minutes. The questionnaire was translated into several languages, with 5% of the interviews completed in a language other than English. Informed consent was obtained from respondents when it was determined that the household contained age-eligible children. The Institutional Review Board at National Center for Health Statistics approved the survey instrument and implementation procedures.
The focus of this article concerns the concept of family provider partnership in the treatment of CSHCN, as operationalized in the survey by: “In the past 12 months, how often did your child's doctors or health care providers help you feel like a partner in his/her care?” We classified responses of “usually” or “always” as an indication that parents perceived themselves as having a partnership with their child's health care provider. Responses of “never” or “sometimes” were equated with a perception of the absence of partnership.
The data analysis includes several parts. Descriptive and analytic statistical methods were used to explore the family-provider partnership and its relationship to a variety of potential predictor (independent) variables. Frequencies of “usually” or “always” feeling like a partner were calculated as a function of sociodemographic variables using bivariate analyses (χ2). Potential sociodemographic predictor variables included the child's race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and non-Hispanic other), gender, age (0–5, 6–11, and 12–17 years), and poverty status (0%–99%, 100%–199%, 200%–399%, and ≥400% federal poverty level). An additional composite predictor variable, the functional ability of the child with special health care needs, was based on responses to 2 questions: (1) “How often has your child's condition affected his/her ability to do things other children his/her age do?” (responses: never, sometimes, usually, or always) and (2) “Do your child's health problems affect his/her ability to do things a great deal, some, or very little?” Frequencies for this predictor variable were derived by combining “usually” and “always” responses on the first question with the frequency of “a great deal” responses to the second question. Health insurance coverage was also examined as a potential predictor of family partnership with the health care provider.
Because some of these predictor variables are correlated with each other, confounding may occur in a simple bivariate analysis, such as that just described. Thus, multivariate analysis (logistic regression) was also used to account for the confounding. Both unadjusted (bivariate) and adjusted (multivariate) results are presented. Adjusted and unadjusted odds ratios (OR) and the 95% confidence intervals were computed.
The association between several outcome variables for CSHCN and sense of partnership with the child's health care provider was explored. Some of the possible effects of parents not feeling like partners include increased numbers of missed school days, difficulty accessing specialist care, unmet child and family needs, and dissatisfaction with services. Therefore, we also tested a set of models (logistic regression) using these outcome variables and the previously described sociodemographic and partnership variables.
Finally, a cumulative risk assessment was undertaken by determining the percentage of families who did not feel like a partner as a function of 3 risk or predictive factors: low income (0%–199% federal poverty level), lack of public or private insurance coverage, and ethnic/racial minority status (Hispanic, non-Hispanic black, and non-Hispanic other). The percentage of families who did not feel like a partner was calculated at each of 4 risk levels: none, any 1, any 2, or all 3 of the predictive factors.
All of the estimates were statistically weighted to reflect population totals using sample weights provided by the data collection agency. The statistical analysis was conducted using SUDAAN,14 a software program that accounts for a complex sample design involving stratification, clustering, and multistage sampling. Taylor series linearization methods were applied for variance estimation.
Among CSHCN, 85.8% of families reported that they usually or always felt like a partner in their child's care (Table 1). Non-Hispanic whites reported the highest levels of feeling like a partner (88.0%) as compared with non-Hispanic blacks, non-Hispanic other races, and Hispanics (83.4%, 82.0%, and 77.5%, respectively). The response variation across age groups was <3%, with families of children in the oldest age group (12–17 years) reporting feeling the least like partners (84.3%) and those with children in the youngest age group (0–5 years) feeling the most like partners (87.1%). The extent to which families felt like partners decreased fairly linearly with increasing poverty level. Families with incomes of ≥400% of the federal poverty level reported a feeling of partnership in their child's care (90.9%) more than families at 0% to 99% of the federal poverty level (78.3%). A relatively large difference in the sense of partnership was noted for families of children who were more severely affected (ie, higher impact of condition on activity level) compared with those who were less affected. Families of children with the highest functional abilities (ie, those whose activity level is never affected by their condition) more frequently reported feeling like a partner (88.2%) as compared with families of children with the lowest functional abilities (78.4%). Finally, families with children who had public or private insurance coverage said they felt like partners more than parents of uninsured children (87.1% vs 75.7%). Gender was the only sociodemographic characteristic that showed no significant bivariate association with whether or not families reported a sense of partnership.
Table 2 shows the ORs from a logistic regression analysis conducted to determine the effects of sociodemographic predictor variables (ie, race/ethnicity, age, gender, poverty status, impact of condition on activity, and insurance coverage) on the feeling of partnership before (unadjusted ORs) and after (adjusted ORs) adjusting for the confounding effects of the other covariates. A comparison of the unadjusted and adjusted ORs indicates that, although some confounding is present as evidenced by the attenuation of the ORs in the adjusted analysis, all of the statistically significant unadjusted differences remained significant after adjustment. For example, Table 2 indicates that after adjustment, large differences remained across income levels as evidenced by the fact that families at the lowest income level were almost twice as likely to lack a sense of partnership than families at the highest income level. Families in the middle 2 income categories were ∼40% to 65% more likely to say that they did not feel like partners when compared with the highest level. Insurance coverage also had a significant impact on the feeling of partnership, with families of uninsured children being 78% more likely to report a lack of partnership.
CSHCN of Hispanic origin were the least likely to feel like partners compared with the other ethnic and racial groups. They were ∼71% more likely than non-Hispanic whites to report not having a feeling of partnership, whereas non-Hispanic blacks and non-Hispanic other races were similarly but somewhat less affected (25% and 52%, respectively). A substantial increase (∼78%) in the likelihood of not feeling like a partner can be seen in the adjusted ORs of families with the most profoundly affected children compared with those who are generally not limited in their activities. Families of 12- to 17-year-old CSHCN were 32% more likely to report not feeling like a partner than the 6- to 11-year-olds, but the difference between the 6- to 11-year-olds and youngest age group (0–5 years) was not significant. Gender was not a significant factor in whether families felt like partners.
Some of the possible outcomes of not feeling like a partner might be increased numbers of missed school days, greater difficulty accessing specialty care, dissatisfaction with services, and unmet child and family needs. Adjusted ORs for these outcomes as a function of sense of partnership (while controlling for race/ethnicity, age, gender, poverty status, functional ability, insurance coverage, and partnership) are shown in Table 3. The partnership variable was significantly associated with each of the independent variables, although the effect size declined slightly after adjustment for confounding. Families who reported never or sometimes feeling like a partner were ∼10 times more likely to be dissatisfied with services compared with families who reported that they usually or always felt like partners. Their child was ∼4 times more likely not to get needed specialty services and ∼2 to 3 times likelier to have unmet child and family needs. Partnership was a weaker but significant predictor of increased numbers of missed school days.
Income (0%–99% federal poverty level) and functional ability of the child with special health care needs (highest impact of condition on activity level) were also significantly associated with each of the outcome variables after adjustment for confounding. Being uninsured was significantly associated with each of the variables except missed school days. Race and age were inconsistent in their association across the outcome variables after adjustment.
Table 4 shows the effect of cumulative predictors or risk factors (ie, poverty, lack of insurance, and minority status) for families of CSHCN on the likelihood of not feeling like a partner. For families with no predictors, ∼10% reported not feeling like a partner. As the number of predictors is increased from 0 to 3, the percentage of families not feeling like partners increases by 3.5 times to ∼35%.
Most families of CSHCN feel they are partners in the care of their children. However, 14%, or ∼1 million nationwide, lacked a sense of partnership. Poverty, minority status, absence of insurance, and greater severity of functional limitation were associated with greater risk of lacking a sense of partnership. Cumulative sociodemographic risk factors (poverty, absence of insurance, and minority status) were associated with increasing likelihood of being without a sense of partnership in the care of CSHCN. Each additional risk factor led to a more than linear increment in risk of absence of partnership, such that minority uninsured children residing in low-income families faced a threefold to fourfold increase in the likelihood of being without a sense of partnership compared with children without any of these risk factors. To compound issues for minority families, there is evidence that provider bias and stereotyping, within the context of the clinical setting, with its pressures to limit costs and time spent with patients, as well as provider uncertainty and the bureaucratic nature of health system, may contribute to racial and ethnic disparities in the quality of health care.15
The elevated risks of lacking a sense of partnership experienced by families of disadvantaged children were attenuated when we used multivariate analysis to control for confounding. Nevertheless, all of the differences in risk remained statistically significant, and some cases were quite large. For example, even after adjustment, poor families were twice as likely as higher income families to report an absence of partnership. Similarly, Hispanic families were almost twice as likely as white, non-Hispanic families to be without a sense of partnership, even after taking into account differences in age, severity, and insurance status.
We found that the presence of health insurance was strongly associated with an increased likelihood of partnership. This suggests that expansions in health insurance coverage, such as State Children's Health Insurance Program, can facilitate higher rates of partnership. However, it is important to note that insurance expansions alone are not adequate. Even after statistically holding constant insurance status, we still found significant socioeconomic gradients and racial/ethnic disparities in partnership. Hence, both financial (eg, expansions in insurance and enhanced reimbursement rates) and nonfinancial (eg, provider training, parental empowerment, etc) initiatives will be needed to reach 100% success for this core program outcome.
We also found that a sense of partnership was predictive of improved outcomes across a number of important health care measures, including missed school days, access to specialty care, satisfaction with care, and unmet needs for child and family services. Partnership was particularly predictive of better access to specialty care and satisfaction with services. These findings suggest that efforts to increase partnership will have the added benefit of improving many other aspects of the health care experience for families.
The partnership concept in decision-making is critical, because parents/guardians have the ultimate responsibility for caregiving and overseeing their child's health care.3 Partnership is particularly critical for families with CSHCN because of the many decisions that families must make regarding primary and specialty health care and related services on behalf of children with multiple needs.4 Moreover, because of the nature of the special needs of their children, some families may perceive their physicians as so significant that they put forth more of an effort to build positive relationships to ensure that physicians will put forth extra effort on behalf of their children.
A 1999 national survey conducted by Brandeis University in collaboration with Family Voices further documents that families want to be informed decision-makers around the health care for their children.16 According to families who completed the Family Centered Behavior Scale developed by the Beach Center on Disability, the 3 most desired provider/provider staff behaviors included: accepting families as important team members for a child, listening to families, and treating families with respect.7 The importance of partnerships in relationship to health and family outcomes has been recognized by the American Academy of Pediatrics, which has incorporated into its policy statements for the medical home, that “the physician should be known to the child and family and should be able to develop a partnership of mutual responsibility and trust with them… respecting their diversity.”17
As noted earlier in this article, the MCHB has renewed its ongoing commitment to the family-provider partnership through its support for the new definition of family-centered care. The new definition recognizes partnership as the foundation of family-centered care and includes the following principles: (1) families and professionals work together in the best interest of the child and family; as the child grows, he or she assumes a partnership role; (2) everyone respects the skills and expertise brought to the relationship; (3) trust is acknowledged as fundamental; (4) communication and information sharing are open and objective; (5) participants make decisions together; and (6) there is a willingness to negotiate.1
Results of the NSCSHCN demonstrate that whereas most families of CSHCN feel that they are partners in the care of their child, further work is needed to facilitate partnerships, particularly for children below the poverty level, uninsured children, Hispanic and black children, and children with functional limitations. Significantly, but not surprisingly, these are the same groups most at risk for not being well served in other aspects or components of the broad system of services identified earlier in this article, including access to a medical home, adequate financing for services, early and continuous screening, access to and satisfaction with community services, and youth transition. These findings reinforce the case for strategies responsive to the unique issues facing underserved families. For example, providers who take the time to better understand sociocultural influences and preferences and who use culturally and linguistically competent approaches to their primary care practices report an increase in patient satisfaction, improved health outcomes, and greater provision of preventive care.18 Taken as a whole, the survey results presented here demonstrate and underscore the importance of partnership as a critical component of an effective system of care for CSHCN and their families.
- Accepted June 1, 2006.
- Address correspondence to Diana Denboba, BS, Division of Services for Children with Special Health Care Needs, Maternal and Child Health Bureau, Health Resources and Services Administration, Parklawn Building, 5600 Fishers La, Room 18A-18 Rockville, MD 20857. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
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- ↵McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics.1998;102 :137– 140
- ↵Wells N, Krauss MW, Anderson B, et al. What Do Families Say About Health Care for Children with Special Health Care Needs? Your Voice Counts!! The Family Partners Project Report to Families. Available at: www.familyvoices.org/YourVoiceCounts/National%20Famrpt.pdf. Accessed August 11, 2006
- ↵US Department of Health and Human Services. Healthy People 2010 Objectives for Improving Health, Volume II, Conference Ed. Washington, DC: Health Resources and Services Administration; 2000
- ↵US Department of Health and Human Services. Delivering on the Promise- Compilation of Individual Federal Agency Reports of Action to Eliminate Barriers and Promote Community Integration. Section: Self-Evaluation to Promote Community Living for People With Disabilities SOLUTION III.C. Washington, DC: Health Resources and Services Administration; 2000. Available at: www.hhs.gov/newfreedom/final/hhsfull.html#sol3c. Accessed August 11, 2006
- ↵US Department of Health and Human Services, Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs. A 10 Year Action Plan to Achieve Community-Based Service Systems for Children and Youth With Special Health Care Needs and Their Families. Washington, DC: Health Resources and Services Administration; 2001
- Honberg L, McPherson M, Strickland B, Gage JC, Newacheck PW. Assuring adequate health insurance: Results of the National Survey of Children with Special Health Care Needs. Pediatrics.2005;115 :1233– 1239
- ↵Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: Results from the National Survey of Children with Special Health Care Needs. Pediatrics.2005;115 :1562– 1568
- ↵Blumberg SJ, Olson L, Frankel M, et al. Design and operation of the National Survey of Children with Special Health Care Needs, 2001. National Center for Health Statistics. Vital Health Stat.2003;41 :1– 136
- ↵SUDAAN [computer program]. Release 9.0. Research Triangle Park, NC: Research Triangle Institute; 2004
- ↵Smedley B, Stith A, Nelson A, eds. Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003
- ↵Krauss MW, Gulley S, Leiter V, et al. The Family Partners Project-Report on a National Survey of the Health Care Experience of Families of Children With Special Health Care Needs. Waltham, MA: The Starr Center for Mental Retardation and Disability Policy Research; 2000
- ↵American Academy of Pediatrics Medical Home Initiatives for Children With Special Needs Project Advisory Committee. Policy statement: The medical home. Pediatrics.2002;110 :184– 186
- ↵Cohen E, Goode T, Dunne C. Policy Brief 1: The Rationale for Cultural Competence. Washington, DC: National Center for Cultural Competence, Georgetown University Center for Child and Human Center; 2003
- Copyright © 2006 by the American Academy of Pediatrics