ABSTRACT
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 38,866 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.
Subject(s)
Disabled Children , Family Health , Physician-Patient Relations , Adolescent , Child , Child Health Services/statistics & numerical data , Child, Preschool , Decision Making , Female , Health Care Surveys , Health Services Accessibility , Humans , Infant , Infant, Newborn , Insurance Coverage , Male , Social Class , United StatesABSTRACT
BACKGROUND: Children with special health care needs (SHCNs) are an important population from health care services, economic, and policy perspectives. However, until recently, no national data on their prevalence and health care service needs that use a commonly accepted definition have existed. OBJECTIVE: To provide national estimates of the number of children with SHCNs and their characteristics, including an assessment of how well their needs are being met. SETTING: The United States. PARTICIPANTS: Interviews were conducted by telephone with the families of 38 866 children with SHCNs younger than 18 years using the State and Local Area Integrated Telephone Survey platform developed by the Centers for Disease Control and Prevention, Atlanta, Ga. MAIN OUTCOME MEASURES: Prevalence of SHCNs, demographic and socioeconomic correlates of SHCNs, access to care, satisfaction with care, and impact on the family. RESULTS: An estimated 12.8% of US children experienced an SHCN in 2001. Prevalence was highest among boys, school-age children, and children in lower-income families. A substantial minority of these children experienced unmet health needs (17.7%) or lacked critical elements of family-centered health care (33.5%). The impact on families was pronounced, as 20.9% reported their child's health care caused financial problems, and 29.9% reported cutting back or quitting work because of their child's condition. These adverse child- and family-level impacts were concentrated among low-income and uninsured children with SHCNs. CONCLUSIONS: Children with SHCNs and their families represent an important underserved population. In addition, substantial disparities are present in access, satisfaction, and family impact.
