Factors Associated with Adolescents' Self-Efficacy to Meet with their Health Care Provider Alone.

Pediatric hospitals are not appropriate for adult admissions

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Academic pediatric departments, government agencies, and children with special health care needs

Directors of 86 day care centers in a large metropolitan area were surveyed to determine the availability and factors affecting the availability of day care services for preschool children with special health care needs. Fiftysix (65%) centers enrolled preschoolers with special health care needs. Less than 5% of preschoolers enrolled had special health care needs, and few had disabilities or conditions that required special interventions. Barriers to admission included restrictive admittance requirements; lack of staff; fear of not meeting the child's needs; and lack of trained personnel. Supports needed by the centers included more staff, greater staff training, and increased funding. Over half of the directors expected benefits from enrollment of these children. Few, however, knew the Americans with Disabilities Act's requirements of inclusion of children with special health care needs. Data from the survey support a need for increased collaboration between the state's Part C system, agencies regulating and supporting day care services, and health care providers. Involvement of pediatric health care professionals at all levels of the child care system could assist in promoting quality day care for all children with special care needs and in producing much needed linkages between day care services and the child's health care providers.

Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005-2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. In the nationally representative, cross-sectional 2005-2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12-17) were asked if they have had discussions with their child's health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their child's adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.

Challenges Facing Pediatric Nursing

The perspectives of families, and especially parents of children with special health care needs, need to be better understood by the government agencies, health care providers, associations, and information systems vendors that are integrating child health information systems. To date, research on children with special health care needs has not included the perspectives of parents on integrated child health information systems. Interviews were conducted with a limited number of parents of children with special health care needs and a young adult with special health care needs about their perspectives on integrated health information systems needs. The interviews revealed common themes: (1) parents have experienced the benefits of information technology for health care purposes, (2) parents believe integrated health information systems could help to coordinate their children's health care, (3) parents believe information technology can help improve accuracy and timeliness of information, (4) parents of children with special health care needs believe their children's health information should be available to those who need it, but safeguards must be in place, (5) parents believe health information systems can improve health care, but it is not the highest priority health care issue for them, and (6) parents believe that their involvement in issues related to children with special health care needs, including information technology, is critical. Parents of children with special health care needs hold strong opinions about their children's health care, including health information systems. Parents need to be central to discussions about development of integrated child health information systems if we are to develop information systems that serve the needs of children with special health care needs and their families.

250. Electronic Medical Record-Based Transition Planning Tool for Children & Youth With Special Health Care Needs: A Continuous Quality Improvement Project to Increase Provider Satisfaction and Preference

BackgroundChildren and young adults with special health care needs comprise a significant portion of the pediatric population in the United States, where 1 in every 5 children has a complex health care need. These patients are more likely to receive unsafe care and have their needs unmet in part due to lack of accessible information and limited training support. Barriers in communication may contribute to detrimental outcomes for this vulnerable, high-risk population.ObjectiveThis project aims to identify barriers to communication in children and young adults with special health care needs in the health care setting. These barriers will inform prototype development using human-centered design approaches to create a web-based application. Feedback from patients, caregivers, and health care providers (HCPs) was obtained on the usability and usefulness of the tool within the health care setting.MethodsA needs assessment was conducted in which participants shared their experiences in providing or receiving health care services via a semistructured interview that was recorded and transcribed. Transcripts were analyzed inductively for themes, coded, and used to categorize the data. On the basis of these themes, iterative development of a web-based application for social stories took place. Focus groups were held to provide relevant feedback on the prototype.ResultsThere were 15 participants (n=10, 67% HCPs and n=5, 33% patients and caregivers) interviewed for the needs assessment that informed prototype development. A web-based application for social stories depicting different aspects of health care interactions was created. Focus group feedback from 19 participants (n=12, 63% HCPs and n=7, 37% patients and caregivers) on usability through the System Usability Scale, along with narrative feedback, was obtained. Overall, the usability of the application was supported by caregivers and HCPs.ConclusionsChildren and young adults with special health care needs require medical services that their peers generally do not, thereby compounding potential barriers in communication surrounding health care delivery. Using social stories geared toward health care interactions may help reduce anxiety and difficulty.

BackgroundTransition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators.MethodsFundamental qualitative description was utilized in this study to identify perceptions from health care providers about implementing a patient navigator service for young people with special health care needs in transition to adult care. A purposive sample of health care providers with a variety of backgrounds within pediatric and adult systems in Alberta, Canada were recruited. Semi-structured interviews with participants were analyzed using thematic analysis to inductively identify perceptions regarding the role of patient navigators.ResultsA total of 43 health care providers highlighted the need for a patient navigator service to encompass 4 key stages for young people with special health care needs transitioning from pediatric to adult services: (1) identification of young people with special health care needs and families requiring support, (2) preparation for transfer, (3) health system navigation and, (4) post-transfer support.ConclusionsThe results of this qualitative study provide guidance for the development of patient navigator interventions for young people with special health care needs, as well as provide support for current transition services offered across Canada.

Medically Fragile Children Challenge Medical Home Concept

Stakeholders' Perceptions of Care Coordination: A Participatory Process

The Call for Health Care Reform and the Pediatric Nursing Shortage

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