During the past 20 years, the number of children and youth with neurological disorders attending schools has increased dramatically. There are two reasons for this increase. First, medical advances have resulted in more children and youth with neurological disorders surviving. Second, in the past, children with disabilities and health care needs were cared for in hospitals and residential institutions. Since 1975, however, federal legislation has mandated that all children with disabilities be provided a free appropriate public education in the nation's schools and in general education classrooms whenever possible.Unfortunately, school administrators and classroom teachers are not trained in how to accommodate students with neurological disorders. The medical literature provides information regarding the medical aspects of neurological disorders. However, neither the medical literature nor the educational literature provides the specialized knowledge and skills administrators and teachers need to plan for and provide appropriate educational and health related services to children with neurological disorders. This dissertation addresses the need to provide teacher and administrators with practical information about accommodating students with neurological disorders in schools.The purpose of this project was to develop a resource manual which describes the impact of students' neurological disorders on their education. This "user-friendly" resource manual can be used by teachers, administrators, and support staff in developing individualized educational programs for children and youth with neurological disorders. The manual focuses on six neurological disorders about which school personnel have limited knowledge. Section One includes a historical overview of the education of children with neurological disorders and the legislation which mandates that schools must provide all children with disabilities an appropriate education. Section Two describes each neurological disorder by presenting the definition of the disorder and its associated physical and cognitive conditions. Section Three addresses accommodations teachers can use in classrooms to meet the individual physical, cognitive and health care needs of these children.

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This thesis is comprised of three chapters that empirically examine two important areas in health economics: access to health care and health outcomes. The first chapter explores the impact of health care utilization on unmet health care needs (UHC) using four biennial confidential master files (2001-2010) of the Canadian Community Health Survey and applying an instrumental variables (IV) approach to deal with the endogeneity of health care utilization. The presence of drug insurance and the number of physicians in each health region are used to identify the causal effect. I find a clear and robustly negative relationship between health care use and unmet health care needs; individuals who are more likely to report unmet health care needs are those who use the health care system less frequently. One more visit to a family doctor, specialist or a medical doctor on average, decreases the probability of having unmet health care needs by 7.1, 4.6 and 2.8 percentage points, respectively. Further analysis by sub groups reveals that the impact of health care utilization on UHC is larger for females in comparison to males, rural residents in comparison to urban dwellers and those with low household income rather than high. The second chapter of this thesis examines whether the presence of the unmet health-care (UHC) needs has an adverse effect on health outcomes using the National Population Health Survey, a nationally representative longitudinal data set spanning 18 years. I pay close attention to the potential endogeneity of this problem. Five direct and indirect measures of health-related outcomes are examined. I find clear and robust evidence that the presence of UHC either two-years previously or anytime in the past, affects negatively the current health of the individual – controlling for a host of other influences. For instance, reporting UHC in the previous cycle reduces the probability of being in excellent or very good health and in good mental health, respectively by 8.1 and 1.2 percentage points; it reduces the HUI3 score by 2.9 percentage points and increases the expected number of medications used by 11%. Further analysis by looking at the effect of UHC when it was due to accessibility reasons, reveal that the effect of UHC because of accessibility reasons on health outcomes is larger than the one of the overall UHC, but the difference is small in general. Finally, the third chapter of this thesis examines the link between social networks and access to health care utilization, focusing particularly on the probability of having a regular family doctor. Unlike previous work that uses cross sectional data, I use panel data from the National Population Health survey to control for unobserved heterogeneity. Access to a regular family doctor is modeled using the dynamic random effects probit model, which makes it possible to explore the dynamics of access to a regular family doctor– for instance, the role played by past access status to a family doctor in predicting current access. In particular, I use the dynamic random effects probit model that controls for both unobserved heterogeneity and for initial conditions effects. I find robust evidence of a highly statistically significant relationship between social capital and the probability of having a regular family doctor. Although the marginal effects are modest, the results from all model specifications show that there is clear evidence that individuals with high levels of tangible, affection, emotional, social interaction, who live with spouse only or with spouse and children are more likely to have a regular family doctor, whereas those living alone are less likely to have a regular family doctor. The results also reveal that past access to a family doctor is an important determinant for both current and future access. The predicted probability of having a regular family doctor is about 18 percentage points (or 20%) higher for individuals who had a family doctor in the previous period, relative to those who did not. In addition, I find that unobserved heterogeneity accounts for about 25% of the variation in accessing a regular family doctor and is significantly correlated with the access to a family doctor over my long panel.

The aim of the study was to explore the experiences of displaced women living in the Osire refugee camp in Namibia about their health care needs, and to develop health care guidelines that will help to address the identified health care needs of displaced women. A descriptive phenomenological study was used, using face-to-face interviews with participants in response to one question. The following question was asked: What are the health care needs of displaced women living in Osire refugee camp and how should they be addressed? Ten women were interviewed. Their ages ranged between 18 and 58 years. The duration of displacement was longer than 6 months. Interviews were conducted in Osire Refugee Camp in Namibia. Displaced women were invited to participate in the study on a voluntary basis. The interviews were tape recorded and transcribed verbatim. During the analysis the essence substantiated by the constituents of their experiences regarding their health care needs were identified. The findings of the health care needs of displaced women living in Osire refugee camp reflect that they have a need for restoration of hope and human dignity. A thorough literature review was done and the constituents were re-phrased to form guidelines on how to address the health care needs of displaced women. The guidelines were refined through a Delphi study. / Thesis (PhD)--University of Pretoria, 2014. / tm2015 / Nursing Science / PhD / Unrestricted

Epidemiologic surveillance indicates an increased susceptibility to obesity among children with special health care needs (SHCN) in comparison to children without. The present study investigated this disparity in weight severity between both groups, with a focus on the provision of obesity management counseling by physicians. This study consisted of a retrospective medical record review that acknowledged the effect of patient-provider interactions on health behaviors and risk perceptions. An independent sample t test compared the incidence of clinician-initiated obesity management counseling received by children with SHCN to that which was received by children without SHCN. This t test revealed a statistically significant difference between the weight management frequency received by youth with SHCN (M = 1.0, SD =.46498) and the weight management frequency received by youth without SHCN (M = 2.0, SD = .74975), t(100) = 7.826, p = .000, α =.05 over a 2-year timeframe. Bivariate correlation analysis validated a correlation between weight severity among children with SHCN and the incidence of clinician-initiated obesity management counseling. The results indicated a small but significant association between weight severity and weight management frequency among children with SHCN, r(50) = .287, p = .044, α =.05. These results support the need for a transformation in the delivery of preventive health services for children with SHCN, such as providing clinician-based obesity management strategies and increasing access to validated diagnosis-specific preventive health screening tools. These results promote positive social change by informing efforts to improve health outcomes and decrease health disparities experienced by people with SHCN.

Background: Transition readiness is a critical set of skills that youth must acquire as they prepare for managing their healthcare in adulthood, for both youth with and without special health care needs (SHCN). Currently much of the literature pertaining to transition readiness focuses youth with special health care needs (YSHCN). However, all youth, including those without special healthcare needs, should develop skills for managing their health as they transition into adult healthcare. Additionally, youth from rural areas may face additional barriers to acquiring the skills for transition, yet a paucity of information on transition readiness among this population. Objective: We examined transition readiness among youth in two rural high schools in South Central Appalachia. Specifically, we examined differences in readiness among youth with and without SHCN. Design/Methods: We used data from a 2016 school-based survey of adolescents ages 16-18 at two high schools in rural South Central Appalachia Tennessee (n = 437). Using a validated screener, we identified 23% of youth as YSHCN. Compared to healthy youth, a greater proportion of YSHCN were female (68% vs. 49%) or non-Hispanic white (96% vs. 83%). We assessed differences in transition readiness as measured by four subscales (managing medications, appointment keeping, tracking health, and talking with providers) of the the Transition Readiness Assessment Questionnaire (TRAQ). Responses were collasped into two categories, yes/no, for each item and summed to create scale scores. We conducted MANOVA models predicting transition readiness by YSHCN status and demographics as potential covariates. Results: YSHCN scored significantly higher than youth without SHCN on all four measures of transition readiness (p<.01). In multivariate analyses YSHCN (versus other youth) had significantly greater transition readiness for the four subscales: F(4, 401= 5.36, p<.001), controlling for age. Table 1 displays overall and group means, and p-value for the TRAQ subscales. Conclusion(s): Rural YSHCN scored higher on the scale, perhaps due to their increased exposure to the health care system. Readiness skills for the transition to adult health are necessary for all youth however, findings from this study suggest that many rural youth—particularly those often thought of as “healthy”—may not be fully prepared for this transition. Findings point to the need for the development of interventions to help all youth effectively make transition to adult healthcare

Background: Professional guidelines recommend that all adolescents receive annual preventive visits including psychosocial and behavioral screening, and anticipatory guidance and counseling for health risk behaviors. Youth with special health care needs (YSHCN) experience many health-related disparities yet little is known about receipt of such counseling this population. Objective: We characterized adolescents’ receipt of recommended healthcare provider-delivered counseling and assessed differences between youth with and without special health care needs. Design/Methods: We used data from a 2016 school-based survey of adolescents ages 16-18 in rural South Central Appalachia Tennessee (n=403). About one-quarter (23%) were categorized as YSHCN. A greater proportion of YSHCN were female (68% vs. 49%), non-Hispanic white (96% vs. 83%), or had seen a doctor or other healthcare provider in the past year (97% vs. 83%) (all p<.05). Adolescents reported on their discussions with a healthcare provider about ten different recommended topics across four areas: weight/physical activity; mental health; substance use; and protective factors (i.e., friends, school). We assessed differences in individual topics discussed by YSHCN status using chi-square analyses and multivariable logistic regression. Results: Overall, only half (50%) of adolescents reported talking with their healthcare provider about any of the assessed topics. As shown in Figure 1, receipt of counseling varied by YSHCN status with a greater proportion of YSHCN reporting having discussed most of the assessed topics with a healthcare provider compared to other youth. In multivariable models controlling for adolescents’ sex, age, race/ethnicity, SES, use of health services, and quality of a relationship with their healthcare provider, YSHCN had greater odds than other youth of discussing topics related to weight/physical activity (OR=4.08, 95% CI: 2.35-7.07); mental health (OR=2.50, 95%CI: 1.46-4.31); protective factors (OR=2.32, 95% CI: 1.29-4.18); but not substance use (p>.05). Conclusion(s): This study provides novel data on receipt of healthcare provider-delivered counseling about important health risk and promotion topics. Findings suggest that YSHCN are more likely than other youth to receive counseling about most topics, even when controlling for their increased receipt of preventive care. However, findings also highlight suboptimal provision of anticipatory guidance to all youth, and point to the need to increase delivery of adolescent preventive servcies.

Epidemiologic surveillance indicates an increased susceptibility to obesity among children with special health care needs (SHCN) in comparison to children without. The present study investigated this disparity in weight severity between both groups, with a focus on the provision of obesity management counseling by physicians. This study consisted of a retrospective medical record review that acknowledged the effect of patient-provider interactions on health behaviors and risk perceptions. An independent sample t test compared the incidence of clinician-initiated obesity management counseling received by children with SHCN to that which was received by children without SHCN. This t test revealed a statistically significant difference between the weight management frequency received by youth with SHCN (M = 1.0, SD =.46498) and the weight management frequency received by youth without SHCN (M = 2.0, SD = .74975), t(100) = 7.826, p = .000, α =.05 over a 2-year timeframe. Bivariate correlation analysis validated a correlation between weight severity among children with SHCN and the incidence of clinician-initiated obesity management counseling. The results indicated a small but significant association between weight severity and weight management frequency among children with SHCN, r(50) = .287, p = .044, α =.05. These results support the need for a transformation in the delivery of preventive health services for children with SHCN, such as providing clinician-based obesity management strategies and increasing access to validated diagnosis-specific preventive health screening tools. These results promote positive social change by informing efforts to improve health outcomes and decrease health disparities experienced by people with SHCN.

Families of children with special health care needs (CSHCN) and disabilities who lived in rural communities faced a variety of economic, social, and environmental challenges. Bronfenbrenner (1979, 2005) in his Bioecological Theory of Human Development offered an insightful lens for understanding the nested environments in which these families interact. This model was used as the overarching framework for this dissertation. The three manuscripts contained in this dissertation have included analyses of the involvement and participation of families of CSHCN and disabilities in the creation of a medical home located in a rural southwestern border community. These studies were critical for the medical home professionals - family involvement was at the core of the medical home philosophy. The overarching purpose of this dissertation was to set the foundation for successful family participation and feedback in the medical home. Within the first manuscript, I used the Medical Home Family Index to discover families’ (a) perceptions of interactions with medical professionals and (b) ratings of the quality of care within the medical home. Families of CSHCN (N = 92) completed the Medical Home Family Index and descriptive statistics as well as Chi-Square analyses were completed. Significant associations between families’ home languages and the amount of time the CSHCN had been receiving services at the medical home and the families’ responses were found. No associations between the children’s ages and the families’ responses were found. Recommendations for medical home professionals to complete the partner index, the Medical Home Index, were included. The purpose of the second manuscript was to examine the support needs of families of CSHCN and disabilities. Relationships between the severity of the children’s special health care needs and disabilities and the potential services they required were explored. For this study, a small sample (N = 25) of families of CSHCN completed the Family Needs section of the Center for Medical Home Improvement Family Survey, an in-depth, five-part survey designed to have families report on the services and supports that their CSHCN actually received. Families of CSHCN identified the need for therapies to be provided within the community. Findings from this study supported the creation of a pilot program in which parents were active participants in an intensive summer program designed to address the language and communication needs of their children. The purposes of the third manuscript were to (a) conduct research in two settings - a rural medical home and the families’ natural environments, (b) identify families’ perceptions of a targeted summer language intervention program, and (c) determine what changes in young children’s communication skills could be measured when parents were active members in a targeted summer language intervention program. For the third study, fourteen children with language delays and their families participated. Children were assessed using the Battelle Developmental Inventory-2nd Edition or the Preschool Language Scale-4th Edition. Intervention was conducted within a pediatric medical home and families continued the intervention at home. For both test results, the treatment had a significant effect. All families indicated a strong desire to continue the program and families who were most concerned with their children’s language were most satisfied with the program. This pilot program model was an example of ways that interventions could be extended successfully beyond traditional settings.

Background/Aim: During the past two decades, major advances in maternal-fetal medicine, neonatology, and the development of regionalized perinatal care have resulted in dramatic increases in survival rates, by more than 60%, of extremely immature (EI) infants born at less than 26 completed weeks of gestation, creating a new infant population. Studies of school-age outcomes in children with an extremely low birth weight of &lt; 1000 g, born in the1980s, indicated that these children had a substantially high prevalence of low-severity neuropsychological deficits, behavioral problems, and difficulties at school. Information on school-age outcomes of extremely preterm children born in the 1990s is sparse, and mainly restricted to the neurobehavioral and developmental outcome. The aim of this research was to investigate the comprehensive neurological, developmental, functional, and mental health status and health care needs of children born at 23-25 weeks of gestation in the 1990s, allowing a total view of the child in the context of the family, his peers, school, and the health care system. The ultimate aim was to obtain a clearer understanding of the functional capacities of these vulnerable children and the possibilities of ameliorative interventions, as a basis for planning and provision of services for this growing population. Methods: We studied 11-year-old children born from 1990 through 1992 before 26 completed weeks of gestation in all of Sweden. All had been evaluated at a corrected age of 36 months. Of 89 eligible children, 86 (97%) were studied at a mean age of 11 years. An equal number of children born at term served as controls. The following methods were used: 1) well validated, mailed questionnaires filled out by the parents, class teachers and the children themselves; 2) structured interviews were conducted with a parent or a primary caregiver; 3) review of pediatric case records and records from other specialist health care services; and 4) anthropometric measurements (length, weight, head circumference and body mass index) from birth to 11 years of age. The following domains were explored: current health status, growth attainment, mental health assessment, emotional well-being, adaptive functioning and social competencies, school performance, executive functions, and learning and language skills. Relations of socioeconomic background and of environmental and perinatal risk factors to the long-term outcome were evaluated. Results: EI children compared with the controls had significantly higher rates of specific diagnoses or disabilities including neurosensory impairment (15% vs 2%, respectively), asthma (20% vs 6%), poor motor skills (26% vs 3%), poor visual perception (21% vs 4%), poor learning skills (27% vs 3%),poor adaptive functioning (42% vs 9%), and poor academic performance (49% vs 7%). As a consequence of these disabilities, significantly more EI children than controls had chronic conditions, which included functional limitations (64% vs 11%), compensatory dependency needs (59% vs 25%), and services above those routinely required by children in general (67% vs 22%). Regarding growth attainment, EI children had significantly lower values for all three growth parameters (length, weight and head circumference) than the controls at 11 years. They showed a sharp decline in weight and height z scores up to 3 months’ corrected age, followed by good catch-up growth in both weight and height up to 11 years. EI children did not exhibit catch-up growth in head circumference after the first 6 months of life. Preterm birth and parental height were significant predictors of 11-year height, and group status (prematurity) correlated strongly with head circumference. Our results also suggest that the EI children had a significantly greater risk for poorer mental health and poorer emotional well-being than the control participants, including internalizing (anxiety/depression, withdrawn behavior and somatic complaints), and attention, social, and thought problems. No differences in externalizing problems were found between the EI cohort and controls. Multivariable analyses disclosed a number of significant predictors of behavioral adjustment: group status (EI vs control), family function, social risk, male gender, and presence of a chronic medical condition. Concerning school performance, more than half (59%) of our EI cohort were experiencing school difficulties and 15%, compared with 5% of the control children were attending special schools or having full-time special education. Despite fewer adaptive skills in the EI cohort these children were not different from the controls in respect to being happy and being positively adjusted in their day-to-day life. Compared with controls, EI children had a significantly increased risk for executive dysfunctions in most of the areas assessed (Attention control and Attention switching, Hypoactivity, Planning/organizing, and Working memory). EI children were also at increased risk for deficient skills in language tasks (comprehension, communication, and expression) and in the four standard measures of learning skills (reading/writing, math, general learning, and coping in learning). However, only a relatively small number of EI children exhibited severe impairments in executive or non-executive skills. Multivariate analyses revealed that prematurity, executive dysfunction and male gender were associated with poor learning skills. Conclusions and implications: Children born extremely immature have significantly greater health problems and special health care needs that require ongoing services through the school years. However, it is notable that very few children have severe impairments that curtail major activities of daily living. The overall results of this study are reassuring. Despite having an increased risk for mental health problems, executive dysfunctions and school difficulties, 85% of the EI children were in the mainstream schools and a majority were not having major adjustment difficulties. In terms of growth, most of our EI children showed good catch-up in late childhood and were within 2SD of their mean midparental height at 11 years of age. Although biological immaturity is associated with an increased risk for a substantial number of behavioral/emotional problems, improvement of the modifiable environmental factors will benefit the outcome in EI children. We also believe that knowledge of the course of development of psychopathological conditions from early childhood to adolescence and beyond is crucial for identifying the need for intervention and prevention strategies. Thus when there is evidence to suggest neuropsychological and behavioral or emotional problems, early identification and preventive measures might help families to manage these from an early stage. Our findings further suggest that current preterm follow-up programs might benefit from the addition of psychological and family services to traditional neurodevelopmental assessments, especially in the neonatal period and first years of life.