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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.

ObjectiveWe examined the self-reported preparedness of hospitalized adolescents and young adults (AYA) for transition from pediatric to adult-oriented health care with regard to: 1) previous health care transition (HCT) preparation, 2) Self-Determination Theory (SDT) constructs of health self-management autonomy and competence, and 3) their perception of medical knowledge, attitudes, and concerns.MethodsFrom 2013 to 2015, 139 hospitalized patients aged 15 to 21 years completed a 40-item survey on HCT preparation, attitudes, concerns, and perception of knowledge adapted in part from validated questionnaires of the Department of Health and Human Services, Maternal and Child Health Bureau, and SDT Treatment Self-Regulation Study.ResultsFewer than 40% of all respondents endorsed previous HCT preparation such as providers discussing taking responsibility for their health, transitioning to adult providers, and only 20% had discussed future health insurance needs. Of our AYA population, 84% had 1 or more special health care needs. Older patients, female patients, and those with increased HCT preparation scores had increased autonomous motivation, positive attitudes toward transition, yet also increased transition concerns. Higher autonomous motivation and perceived competence correlated with increased perception of knowledge (P = .002, < .001 respectively) and more positive attitudes toward transition planning (P < .001, .054 respectively). Multivariate regression analysis revealed those with increased HCT preparation and those with increased perceived competence had increased perception of knowledge (β = .25, P = .005 and β = .35, P < .001).ConclusionsOur findings suggest that hospitalized AYA received limited education and preparation regarding key elements of HCT to adult-oriented health care. Moreover, those previously exposed to transition preparation efforts were more likely to have motivation and a sense of competence in HCT skills.

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.

Background: There is considerable evidence that physicians lack sufficient training in facilitating transition from pediatric to adult care systems for adolescents and young adults (A/YA). While several primary care residency programs have introduced health care transition (HCT) curricula in recent years, there are few studies that assess the effectiveness of HCT teaching models. Purpose: To assess the impact of a residency education program that uses electronic health records (EHR) and other methods to teach residents how to prepare A/YA for transition to adult care. Methods: In a mixed methods, quasi-experimental research design, quantitative methods were used to measure change in knowledge, confidence and experience among 67 Pediatrics and Med-Peds residents who participated in the program. All residents and a comparison group were invited to complete a 35-item pre/post-survey; a retrospective chart review provided documentation of age-specific HCT preparation tasks completed by residents during well visits for A/YA aged 12-21. Descriptive and correlational analyses were conducted to compare differences between resident and control test scores for 5 outcome variables, and to measure resident utilization of the HCT tool in the EHR. Using the Reach Effectiveness-Adoption Implementation Maintenance (RE-AIM) evaluation model as a guide, semi-structured interviews were conducted concurrently with residents and faculty to assess program acceptability, feasibility, and other important attributes. Interviews were transcribed and analyzed using a constant comparative, iterative process. Results: Survey results showed residents (11 matched pairs) scored significantly higher than controls (13 matched pairs) in 2 of 5 outcomes: exposure to HCT learning activities (p=.0005) and confidence in providing primary care for YSHCN (p=.0377). Overall utilization of the EHR tool among 51 residents was 52.8% (57 of 108 patient visits). In interviews conducted with 16 residents and 6 faculty, both groups said that HCT training is a highly relevant need. Residents said they had little knowledge or experience in HCT prior to the intervention but felt more confident in their abilities afterwards. The HCT tool in the EHR was the only intervention element among multiple modalities that reached all study participants, with more than 80% of residents interviewed reporting they used the HCT tool "usually" or "always." Factors that influenced program adoption included accessibility of educational materials, ease of use, time constraints, patient age and health condition, and attending physicians' enforcement of the protocol. Conclusion: This study contributes to the body of knowledge concerning HCT by increasing our understanding of ways to effectively educate residents about transition preparation. Results show a positive intervention effect on selected dimensions of resident knowledge, confidence, and practice in HCT, highlighting program strengths and weaknesses. The program is distinctive in educating residents to prepare all A/YA for HCT, as recommended by major medical associations for pediatric and adult care physicians, and in its use of the EHR as a primary teaching tool, a consideration for reducing time-intensive didactic instruction. It provides a model that can be adapted by other residency and provider training programs, and suggests a need to integrate acquisition of health care self-management skills more broadly in child and adolescent health preventive care tools and policies.

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.

This research explores final year dental students’ knowledge and attitudes towards the treatment and management of patients with Intellectual and Developmental Disabilities (I/DD) as related to variations in the dental practices in Special Health Care Needs (SHCN) training they received. A quantitative, non-experimental study was conducted, employing survey data collection methods, to address descriptive, comparative, and correlational questions. One cohort, Class 2020, attended extramural rotations in specialized clinics for patients with I/DD and in-person lecture concerning this topic. However, due to the COVID-19 pandemic and its health-related restrictions, another cohort, Class 2021, did not have the same opportunity as rotations were cancelled and the lecture was prerecorded and viewed online. Responses from a 35-item survey, distributed through an online platform, were obtained from both cohorts (n= 14 for Class 2020; n= 19 for Class 2021), addressing descriptive, comparative, and correlational research questions. Results revealed higher levels of knowledge and more positive perceptions of the program from Class 2020, the group that received clinical guidance, than Class of 2021. Analysis revealed positive relationships between students’ confidence levels and whether they had examined, assisted, or treated patients with I/DD. Associations were also found between students’ confidence and willingness to treat patients with I/DD. Although only correlational, this study’s findings suggest ways to foster students’ confidence and induce positive attitudes in dental school graduates that are likely to improve equitable access to healthcare for those with I/DD.

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