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.

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Background: One in five households has a child with special health care needs (SHCN). Such parents report poorer mental health, greater depressive symptoms, and more restrictions in instrumental activities of daily living (IADL). The quality of mental and physical health of all family members' continuingly declines. Objectives: To evaluate the effects of the current ITK Healing Retreat Week program on familial well-being via introduction of CAM methods through assessment of 1) mood based on affect 2) self-efficacy 3) changes in coping skills 4) growth over time in parents/caregivers who have children with SHCN. Methods: A secondary analysis of data from sixteen parents/caregivers who participated in the ITK Healing Retreat Week July 13-19, 2014. Scores from Positive and Negative Affect Schedule (PANAS) with Serenity subscale, Post Traumatic Growth Inventory (PTGI), and Self-Efficacy Scale (SES) were analyzed using SPSS. Content analysis was performed on open-ended questions from post, three and six-month post retreat questionnaires. Results: Before to immediately after the retreat week there was a statistically significant decrease in negative emotions and increase in positive mood state, ability to feel calm/at peace, relate to others, see new possibilities, and confidence in ability to perform certain care needs (<.001). From post to three-month post retreat the families' confidence in ability to perform certain care needs did not change (<.001), but declined from three to six month post retreat in a statistically significant manner (.044). Content analysis indicated that the biggest benefit for the families was being in a supportive community and having an increase in positive emotional states. At six-months post retreat an increase in receptivity was additionally reported. Conclusion: The ITK Healing Retreat Week program positively impacted families who have children with SHCN in multiple positive ways: increased mood, more confidence, ability to relate better to others and ability to see new possibilities. In effort to make this program generalizable or even replicable, further research needs to be done on the mechanism of change, the structure that creates this change, and how to make such a change sustainable by investigating a new retreat format and alternative research tools, questions, and scales.

Background: Every year in the United States approximately half a million youth with special health care needs (SHCN) turn 18. Little is known about how this population fares during the transition to adulthood. Purpose: To examine transitions to adulthood for young adults with SHCN. Methods: Using data from two national longitudinal surveys: the Panel Study of Income Dynamics and the Survey of Adult Transitions and Health, I built linear and logistic regression models to evaluate the relationship between having a history of SHCN during childhood and key transitional outcomes during young adulthood (e.g., mental health status, educational attainment, employment, financial independence and subjective indicators of adulthood). A second set of logistic models examined associations between hypothesized risk and protective factors during childhood (e.g. family financial burden, care in a medical home and access to adequate insurance) and physical health outcomes during young adulthood for youth with SHCN. Multivariate models were adjusted for key confounders. Results: The majority of youth with a history of SHCN were doing well during the transition to adulthood. That said, compared to young adults without a history of SHCN, young adults with a history of SHCN were in significantly worse mental health (adjusted OR of experiencing a non-specific psychological disorder 3.90, 95% CI 1.78-8.53) and had significantly lower odds of graduating from high school (adjusted OR 0.55, 95% CI 0.32-0.96), attending college (adjusted OR 0.61, 95% CI 0.38-0.96), and receiving financial assistance from their families (adjusted OR 0.56, 95% CI 0.38-0.83). Amongst young adults with a history of SHCN, family financial burden during childhood significantly decreased the odds of being in good physical health during the transition to adulthood. There was limited evidence that receipt of care in a medical home or access to adequate insurance during childhood increased the odds of being in good physical health for young adults with a history of SHCN. Conclusions: These findings have important policy implications for programs serving youth with SHCN. Specifically, mental health and educational services may need to be expanded and more emphasis placed on addressing the non-medical determinants of health, like family financial burden.

It is estimated that one out of every five household with children in the United States includes a Child with Special Health Care Needs (CSHCN). Families of CSHCN face many challenges including financial burdens beyond that of other families and difficulty accessing much needed pediatric specialty care. Telemedicine provides a potential solution or, at the least, an alternative to the traditional system of care, for health care providers and communities to address access and financial concerns of families of CSHCN. A quasi-experimental research design was used in this study to examine the differences in cost, caring, and family-centered care in relation to pediatric specialty services utilizing telemedicine technology compared to traditional face-to-face care. The study sample included a convenience sample of 222 parents/ guardians of CSHCN residing in rural, remote and medically underserved areas of Southeast Florida enrolled in the Children's Medical Services (CMS) program. The sample was comprised of two study groups: traditional (n = 110) which included families receiving traditional face-to-face pediatric specialty care; and the telemedicine group (n = 112) which included families who have received telemedicine visits along with traditional face-to-face pediatric specialty care. Measures of cost, caring, and family-centered care were obtained using three instruments including a Family Cost Survey, Caring Professional Scale (CPS), and Measure of Processes of Care- 20 Item Scale (MPOC-20). Results indicated that there were no significant differences in family costs when telemedicine was available locally compared to traditional face-to-face care in the local community. Family costs were anticipated to be significantly higher if telemedicine was not available in their communities. There were no differences in the families' perceptions of care as caring for the telemedicine and traditional groups. Results indicated significant differences between the groups in regards to family-centered care, with telemedicine group parents/ guardians reporting more positive perceptions of the system of care as family-centered compared to families receiving traditional face-to-face pediatric specialty care. These results together underscore the importance of assuring and facilitating access to pediatric specialty care for CSHCN and their families by further reducing their burdens and costs. The use of innovative systems of care such as telemedicine has promise to promote caring, family-centered systems of care in their home communities. Future research is recommended to further examine nursing roles and interventions in telemedicine programs, measurement tools, and family perceptions of systems of care across different populations.

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

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