Future plans and social/recreational activities of youth with special health care needs: the implications of parental help in completing surveys.

BACKGROUND: A major focus of the literature on youth with special health care needs (YSHCN) is the transition to adult health care. As perceptions of disability are a product of interactions between youth and their environment, it is important to understand youth's needs and experiences beyond health care. Few studies have addressed social/recreational activity participation and future plans and none have included parent/caregiver help in survey completion as a potential factor impacting responses. OBJECTIVES: We describe activity participation and identification of future plans among YSHCN and examine the impact of receiving parent/caregiver assistance to complete a survey on these responses. Implications for research, policy, and practice affecting programs serving and providing transition assistance for YSHCN are discussed. METHODS: Data are from a survey of YSHCN conducted during Alabama's 2010 Title V Maternal and Child Health Needs Assessment. Analyses included descriptive statistics, bivariate analysis, and multivariable logistic regression. RESULTS: Youth who received help completing the survey were less likely to report participating in certain social/recreational activities and key future plans, including hobbies, getting married, having children, and working for pay. CONCLUSIONS: For YSHCN, parent/caregiver assistance to complete a survey is a critical consideration in analyses and interpretation of results. Whether, how much, and what type of help received may represent a more objective proxy measure of perceptions of condition severity or impact on abilities than do self-reported ratings of these factors. Our results also raise questions about the distinctions between youth and parent/caregiver perceptions of independence, participation, and potential.

Underinsurance in children with special health care needs: the impact of definition on findings.

To identify differences in groups of children with special healthcare needs (CSHCN) identified as underinsured by two alternate definitions and discuss implications for policy decisions based on using one definition over another. Secondary data from the National Survey of CSHCN 2005/2006 were analyzed. Only CSHCN who were continuously-insured for 12 months were included in analyses. We identified groups of underinsured CSHCN using two general definitions ("economic" and "attitudinal") and three mutually-exclusive groups (identified by both definitions, identified by attitudinal but not economic, and identified by economic but not attitudinal). Key variables included demographics and condition characteristics. Different underinsurance rates were identified [attitudinal = 30.9 % (n = 11,470); economic = 22.7 % (n = 8,447)] with fair agreement by kappa score (κ = 0.3194; Z = 65.91; p > 0.0001). Differences across mutually-exclusive groups included family income ≥400 % FPL (attitudinal only = 34.2 %, economic only = 16.3 %, both = 18.4 %; p < 0.001) and high severity (attitudinal only = 42.5 %, economic only = 68.5 %, both = 69.9 %; p < 0.001). CSHCN who needed equipment/supplies/home health (OR = 1.31, p < 0.001) had increased odds of being identified as underinsured by the economic, but not attitudinal definition. CSHCN with private insurance had increased odds of being identified by attitudinal only or both definitions, but not by economic only (AO: OR = 1.41, p < 0.001; BOTH: OR = 2.36, p < 0.001). Despite overlap between the two definitions, choosing either one excludes some CSHCN, potentially underestimating the extent of underinsurance and masking important findings related to specific conditions characteristics. A definition that comprehensively identifies and describes underinsurance is vital to translating health insurance coverage expansion into benefit packages that meet complex health and service needs.

The early years of Title V: extending and improving care for children with special health care needs, 1935-1941.

This historical study examines the early years of the federal program of services for children with physical disabilities in the United States (US) during the 1930s, known today as services for Children with Special Health Care Needs (CSHCN). Established as part of the Social Security Act (SSA) of 1935, the Crippled Children Services (CCS) program was one of the first medical programs for children supported by the federal government. Under the SSA, states and territories quickly developed state-level CCS programs during the late 1930s. The US Children's Bureau administered the program for the federal government and helped states to incorporate preventive services and interdisciplinary approaches to service provision into state-level CCS programs. Factors that influenced the implementation of these programs included the availability of matching state funds, the establishment of state programs for crippled children prior to the SSA, and the accessibility of qualified health care professionals and facilities. The early efforts of this federal program on behalf of children with disabilities can be seen in services for CSHCN today.

Healthcare providers' satisfaction with a State Children's Health Insurance Program (SCHIP).

PURPOSE: This study's purpose was to understand how experiences with and perceptions of the health care plan characteristics influence provider satisfaction with a State Children's Health Insurance Program (SCHIP). METHODS: Physicians and other health care providers participating in one program (ALL Kids) were mailed a survey (n = 500). Pediatricians were the most likely to return the survey. We used frequencies, chi-square and logistic regression analysis to explore relationships. RESULTS: The odds of being less satisfied with the program among providers who perceived that reimbursement in the ALL Kids program was less compared to private insurance were almost 7 times (OR = 6.81; 95% CI = (1.88-24.73)) greater than for those who perceived that reimbursement was more or the same in ALL Kids. Likewise, respondents who perceived that All Kids families were less likely than families with private insurance to return for follow-up visits were less satisfied with ALL Kids (OR = 17.42; 95% CI = (1.85-164.70)). CONCLUSIONS: The stigma of SCHIP may be less than that often associated with Medicaid; however, this investigation should be considered with others that have identified barriers for provider's participation. This study indicates that provider satisfaction is related to their perceptions of SCHIP policies and families, though it does not tell us what factors might contribute to this perception, such as, previous experience with public insurance (Medicaid) and publicly insured patients. Increasing reimbursement rates may not address perceptions that affect provider views of publicly-supported health plans and the participating families.

Does access to a medical home differ according to child and family characteristics, including special-health-care-needs status, among children in Alabama?

OBJECTIVE: Our goal was to examine relationships among access to a medical home, special-health-care-needs status, and child and family characteristics in one Southern state. We hypothesized that access to a medical home is influenced by several family and child sociodemographic characteristics, including special-health-care status. METHODS: We used data from the 2003 National Survey of Children's Health. The study sample comprised all Alabama resident children. The main dependent variable was a medical home; the primary independent variable classified children according to children-with-special-health-care-needs status. We controlled for child age, gender, race, family structure, health status, insurance coverage, household education, and poverty. We first explored means or proportions for the study variables and then estimated multivariate logistic regression models. RESULTS: Children with special health care needs were significantly more likely than children without special health care needs to have a personal doctor or nurse, to have a preventive health care visit in the previous 12 months, and to have good communication with their provider. Children with special health care needs were also more likely to experience problems accessing specialty care, equipment, or services. Being uninsured, living at or near the federal poverty level, in a household where no one completed high school, being black, having less than excellent or good health, and living in a nontraditional family structure were characteristics associated with being less likely to have a medical home. In general, children-with-special-health-care-needs status was not related to having a medical home, but dependency on prescription medicine was. CONCLUSIONS: Assuring that all children, irrespective of family income, have access to and are enrolled in health insurance plans will move us closer to the national goal of having a medical home for all children, especially those with a special health care need, by 2010.

The impact of SCHIP enrollment on adolescent-provider communication.

PURPOSE: Effective communication between physicians and adolescents is critical to convey health information, provide counseling and identify emerging health problems. This article addressed two questions: (a) After an adolescent enrolls in a State Children's Health Insurance Program (SCHIP), is there a change reported in communication between the adolescent and his/her health care provider; and (b) Is there a relationship between respondent's characteristics and change observed within specific content areas? METHODS: Adolescent preventive care guidelines developed by national organizations provided the study framework. Surveys were mailed to 3472 12-19-year-olds in a SCHIP; 1689 responded (response rate = 49%). Frequencies described the study population, chi-square analysis explored differences in adolescent-provider communication before and after enrollment, and multiple linear regressions were used to determine relationships between respondents' characteristics and provider communication topics. RESULTS: There were substantial increases after enrollment in SCHIP in the general area of communication between adolescents and their health care providers. Specifically, the presence of a special health care need had a significant influence on most communication areas. Further, females were more likely than males to talk about sexual health (p = .049) and diet and exercise (p < or = .001); older more likely than younger to discuss sexual health (p = .026) and mental health feelings (p = .023); and white more likely than nonwhite to have better overall communication with the provider after enrollment (p = .029) but Whites also were more likely to experience more negative mental health feelings after enrollment in SCHIP (p = .029). CONCLUSIONS: Practice guidelines define the content of preventive services; but, it appears that many adolescents do not receive adequate guidance from their physicians. For the group of adolescents in this study who had recently enrolled in SCHIP, there was a reported increase in their communication with their health care provider. The positive changes in communication suggest that encouraging providers and adolescents to discuss risky behaviors is a feasible, achievable goal.

The association of child condition severity with family functioning and relationship with health care providers among children and youth with special health care needs in Alabama.

OBJECTIVE: The purpose of the present study is to assess how the severity of a child's condition affects family functioning and the relationship with health care providers among children with special health care needs in Alabama. METHODS: Using the data from the National Survey of Children with Special Health Care Needs (CSHCN), three variables were used as measures of condition severity: responses to the CSHCN screener questions, whether condition affected the ability to do things for children and youth with special health care needs (CYSHCN), and the level of severity of CYSHCN's condition. The dependent variables included family functioning and provider relationship. RESULTS: CYSHCN who only take prescription medicine for their chronic condition (MO) had lower condition severity from those who have other needs (NMO). In NMO CYSHCN, higher condition severity was associated with increased strain on family functioning outcomes and higher unmet needs in provider relationship outcomes, adjusted for demographic and insurance variables. Families of NMO CYSHCN with a more severe condition spent more temporal and financial resources and had a higher need for professional care coordination, and were less likely to have sensitive providers. CONCLUSIONS: Severity of condition is an important factor increasing strain on family resources and relationship with the provider. Our results indicate the need for professional care coordination and family support, particularly among those families in which there is a NMO CYSHCN with a more severe condition. This finding supports the mandate that all CYSHCN should have their health care coordinated and provided in the context of a medical home.

Best practices for inclusive child and adolescent out-of-school care: a review of the literature.

Inclusion or full participation by children with disabilities in programs and activities designed for typically developing children benefits children with and without disabilities and their families. Inclusive care programs are least available for school-age children and adolescents. A review of the literature identified best practices for effective inclusive out-of-school care, including: a written program philosophy; a written plan for inclusive programs; strong leadership; a disability awareness program for staff and children; training and support for staff; sufficient staff to meet program needs; a working communication and collaboration; an adapted setting, activities, and time parameters; proficient collaboration with families; and an evaluation plan.

Association of early childbearing and low cognitive ability.

CONTEXT: Teenage pregnancy remains a pressing social issue and public health problem in the United States. Low cognitive ability is seldom studied as a risk factor for adolescent childbearing. METHODS: Data from the National Longitudinal Survey of Youth were used in a matched-pairs nested case-control study comparing women who had a first birth before age 18 with those who did not. Significant differences in Armed Forces Qualifications Test scores and in reproductive and social intervening variables were determined using chi-square analyses and t-tests. Multiple logistic regression models determined the independent effects of specific factors on early childbearing. RESULTS: Women who had their first birth before age 18 had significantly lower cognitive scores than others; women with a second birth before age 20 had significantly lower scores than those with one teenage birth. On average, women with the lowest cognitive scores initiated sexual activity 1.4 years earlier than those with the highest cognitive scores. Among those who had had a sexuality education course, a smaller proportion of women had scores in the first quartile for the overall sample than in the fourth quartile (20% vs. 28%); an even greater difference was seen among women who correctly answered a question about pregnancy risk (14% vs. 43%). Both poverty and low cognitive ability increased the odds of early childbearing. CONCLUSIONS: Young women with low cognitive ability are at increased risk for early initiation of sexual activity and early pregnancy. Further research is needed to design interventions that consider this population's specific information and support needs.