Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings

This article provides an overview of the health care issues and concerns of adolescents with special health care needs and disabilities who are in transition from pediatric to adult health care settings. Adolescents and their families face numerous challenges in accessing adult health care providers who can give adequate primary and specialized health care services to this growing population of youth. Navigating the myriad new and unfamiliar adult services available can be overwhelming for adolescents, their families, and pediatric providers. Assessment and intervention strategies are described that can be used by the pediatric nurse to facilitate successful transitions to adult health care and community-based services.     

Facilitating the transition of adolescents with developmental disabilities: nursing practice issues and care

The purpose of this article is to provide an overview of salient issues that adolescents with developmental disabilities face as they approach adulthood. For nurses who provide services to this population of youth, knowledge of these significant issues is essential to developing a youth-centered transition plan that addresses their comprehensive health needs. Health care professionals, including pediatric nurses, have important roles as service coordinators, consultants, or direct service providers to ensure that the health-related transition needs of the youth are met. Transition assessment, planning, and intervention strategies that can be integrated into a comprehensive plan of care are discussed.     

Dimensions of the Transition Service Coordinator Role

ISSUES AND PURPOSE: This article describes the development and implementation of an innovative advanced practice role, as a transition service coordinator for nurses who work with adolescents with special healthcare needs. Transition services for adolescents with special healthcare needs is an area of growing clinical need requiring that all healthcare professionals, including advanced practice nurses develop new clinical knowledge and skills to practice effectively. CONCLUSION: This emerging specialty area will require advanced practice nurses to provide direct services blending both pediatric and adult healthcare needs and to function in advanced practice roles such as case managers who can ensure the coordination of services between these two very different systems of care while promoting the youth's acquisition of goals for adulthood. This nursing role was first created to provide and coordinate transition services to youth seen in a piloted clinic titled Creating Healthy Futures. PRACTICE IMPLICATIONS: This article describes the various components of this nursing role that incorporated the advanced practice dimensions of clinical expert, consultant, change agent, leader, researcher, and educator that can be replicated in other clinical settings.     

Nurse's role in promoting health transitions for adolescents and young adults with developmental disabilities

This article examines the impact of cultural factors influencing the youth's transition process and includes recommendations for addressing these needs within the context of nursing practice. Youth-centered transition planning begins with a comprehensive, culturally competent assessment of adolescent and family needs in order to foster youth autonomy and family support during this important stage of development. Nurses who work with youth with developmental disabilities are faced with many questions from youth and families regarding the how, what, when, and where of transition planning, such as "Where do I find an adult health care provider who has the clinical expertise and sensitivity to my disability concerns?" and "Where can I get health insurance coverage when I "age out" of the health insurance program I am currently enrolled in?" The questions youth and families have not only reflect their needs for services and supports, but also represent the cultural context of their experiences. Who is this youth who is fast growing up, soon to become an adult? What has been this young person's experiences as a boy or a girl, a person with a developmental disability, a member of his or her family, and a member of the community? Each youth's experiences have an enormous impact shaping his or her progression through adolescence, and the impact continues with adult development. Nurses can serve as pivotal members of the team assisting these youths with developmental disabilities and their families in confronting the challenges and excitement of successfully transitioning to adulthood.     

School nursing in New Zealand: a study of services

There are universal concerns about youth health and recognition of the potential of school health services but little consensus internationally as to how these are best configured. Limited information about nursing services in New Zealand secondary schools, changing patterns of youth health needs and expanding roles for nurses in primary health care indicated a need to research school nursing services. This study found that within New Zealand schools there was wide variation in the types of health services and their funding; that nurses are well qualified and highly experienced, although some lack clinical supervision; that students present most commonly for sexual health and injuries or sickness; and that they choose school health services for accessibility and confidentiality. It concludes that one way forward would be to develop a national-level policy for nurse-led school health centers, with appropriate funding, that allows for local flexibility and includes a career pathway for school nurses.     

Building community-based service systems for children with special needs: the Michigan Locally Based Services program.

The philosophy of the Michigan Department of Public Health, Division of Children's Special Health Care Services (DCSHCS) program holds that children with special health care needs have a right to every opportunity for self-support and self-fulfillment. To assist families, the program historically has provided support with medical care and treatment payments. Likewise, local health departments have shared in the process of supporting families of children with special health care needs. A growing awareness that these families experience a variety of other needs not directly attended to by these mechanisms led the Division to respond further to those needs. The response was aimed toward increasing the capacity to locate clients and provide family assessments, and, where necessary, case management services at the local community level. The implementation, on-going program development, stabilization, and future trends of the Locally Based Services program are described from the varying perspectives of the state and a local health department.     

Health care policy for medically fragile children

Medically fragile children are part of a growing population of children with special health care needs (CSHCN) who are dependent on technology for survival. Despite the extensive care needs characteristic of this population, many medically fragile children are cared for in their homes. Caregivers for these children are faced with numerous tasks, including the daily care of their child as well as the coordination of vital services. Inadequate access to health care, little service availability, limited insurance, and financial restraints may further complicate caring for a medically fragile child in the home. Although federally funded programs such as Supplemental Security Income (SSI) and State Title V CSHCN programs may be beneficial for these children and their families, current policies may limit access to these necessary services. As patient advocates, nurses may be instrumental in assisting medically fragile children and their families to obtain much-needed programs and vital services.     

Parent/professional partnerships in caring for children with special health care needs.

In order for children with special health care needs to be adequately cared for, a variety of integrated, coordinated services are needed to support the children and their families. To facilitate optimal coordination of care for these children, it is imperative that the professionals who serve them engage in a partnership of care with parents or other family members. To that end, the Division of Children's Special Health Care Services (DCSHCS), Michigan Department of Public Health has carried out a variety of efforts to foster such partnerships. This article describes the efforts that have been carried out over the last few years in Michigan to develop parent/professional partnerships. It is not intended to be a scholarly review of the literature, but rather an explanation of strategies that have been used successfully to develop this important interface. Particular emphasis is given to describing the establishment of partnerships between parents of children with special health care needs and nurses and physicians. It is hoped that the sharing of such information will assist others who are just beginning such efforts.     

Community mental health nursing: Keeping pace with care delivery?

The National Mental Health Strategy has been associated with the movement of service delivery into the community, creating greater demand for community services. The literature suggests that the closure of psychiatric beds and earlier discharge from inpatient services, have contributed to an intensification of the workload of community mental health nurses. This paper reports findings from the first stage of an action research project to develop a workload equalization tool for community mental health nurses. The study presents data from focus groups conducted with South Australian community mental health nurses to identify issues that impact upon their workload. Four themes were identified, relating to staffing and workforce issues, clients' characteristics or needs, regional issues, and the impact of the health-care system. The data show that the workload of community mental health nurses is increased by the greater complexity of needs of community mental health clients. Service change has also resulted in poor integration between inpatient and community services and tension between generic case management and specialist roles resulting in nurses undertaking tasks for other case managers. These issues, along with difficulties in recruiting and retaining staff, have led to the intensification of community mental health work and a crisis response to care with less time for targeted interventions.     

Printed Health Information Materials: Evaluation of Readability and Suitability

Interdisciplinary collaboration and coordination of services are receiving new emphasis in Birth to Three Early Intervention programs under Part H of Public Law (PL) 102-119 (Individuals with Disabilities Education Act, formerly PL 99-457, the Education for All Handicapped Children Act). Public Health Nurses (PHNs) have historically provided health promotion services in the home to families of infants and children with special health and developmental needs, whereas other community programs have provided specific developmental and related services. Now, as the number of professional specialties involved with children with special needs increases, overlap also increases. Nursing is frequently questioned as to its unique contribution. The holistic health perspective of nursing, which integrates all aspects of the health and well-being of individuals and families, can provide especially valuable insight to the assessment, planning, and service delivery processes. Nurses need to not only participate in the planning process during the interdisciplinary planning meetings, but also to contribute their own assessment and recommendations from a nursing perspective. Under PL 102-119, the Individual Family Service Plan (IFSP) provides the framework for family-centered planning of services for the infant or young child with special needs. Developed in partnership with the family, this plan identifies strengths, resources, concerns, and priorities based on the family's determination of relevancy (Sokoly &; Dokecki, 1992). IFSP development includes formal and informal assessments by qualified professionals who provide their special expertise as shaped by the family's priorities. The health assessment and services called for within PL 102-119 are consistent with public health nursing's focus on prevention and early intervention. Health issues are basic to the definition of children with special health needs and often must be addressed before developmental goals can be...     

Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability

Families undertake extensive planning during transition to adulthood so youth with concomitant special health care needs and developmental disabilities will have a long-term high quality of life. Findings from an interpretive field study involving 64 youth and their parents indicated that the meaning of adulthood was functioning as independently as possible with appropriate supports. Parental priorities included protecting health, assuring safety and security in multiple realms, finding meaningful activities after high school, and establishing supportive social relationships. These priorities demonstrated the need to broaden usual health care transition goals that focus on finding adult providers and optimizing self-management.     

Crossing community sectors: challenges faced by families of children with special health care needs

This article identifies unmet needs and challenges of 37 families caring for children with special health care needs (CSHCN). Data were collected in focus groups. Data saturation occurred in the third group. Another group was conducted to ensure adequate inclusion of rural participants. Mean age of participants was 36 years. Most participants were women (92%), Caucasian (65%), high school graduates (89%), and employed, with 38% from rural communities. All families had health care insurance, primarily Medicaid (87%). An interdisciplinary team used NVIVO software to facilitate content analysis. Seven areas emerged: family support systems, early intervention/school systems, coordination of care, lack of knowledge, provider/family relationships, parent roles, and insurance systems. Caregivers noted the critical role of nurses but a lack of nurse presence in community care systems. This study adds to the multidimensional nature of caring for CSHCN and highlights the importance of considering how families interface with multiple community sectors.     

Health, education, work, and independence of young adults with disabilities

PURPOSE: Healthy People 2010, the U.S. government's goal for a healthier nation, calls for improved data collection to understand the health status of relatively small population groups, such as young adults with disabilities. This study looks at the transition outcomes of graduates of pediatric systems of care for children with disabilities and chronic conditions. METHODS: Young adult graduates of a state program for children with special healthcare needs and a specialty children's hospital were sent a mail survey that focused on their healthcare access and use, insurance status, health behaviors and perceptions, education, work, and markers of independent living. The survey was based on the , National Longitudinal Survey of Youth, Behavioral Risk Factor Surveillance System, the U.S. Census and other surveys done by the state and hospital programs. Experts in healthcare and school-to-work transition of youth with special needs, health and labor economists, independent living center counselors, program administrators, nurses, social workers, and physicians offered ideas on various versions of the instrument that were piloted on youth before mailing to graduates. A follow-up mailing was sent to all those who did not respond to the first mailing. Results from the surveys of these young people with special healthcare needs are compared with data on typical young adults to determine the disparities. SAMPLE: Mail surveys were sent to all patients aged 18 years and older at the time of their discharge in the preceding fiscal (state program) or calendar (children's hospital) year. The response rate was 51%. Ninety-one percent of the respondents were Whites and 61% were women, with a median age of 21.1 years; 69% reported independence in activities of daily living. RESULTS AND DISCUSSION/CLINICAL RESULTS: Eighty percent of graduates reported having a usual source of care, but 42% used the emergency room compared with 25% of typical young adults. Twenty-nine percent had no health insurance and only 11% had insurance through their work. Only 44% of respondents were working compared with 56% of all 19 year olds and 72% of 18-29 year olds in studies of typical youth; 67% of those not working wanted to work. One great concern is the 26% who are not working, in school, or at home with children. Nurses working with children, families, and young adults can use the information to improve pediatric and adult healthcare systems and collaborate with educational, independent living, and workforce development agencies to improve transition to adult roles and responsibilities for young people with disabilities.     

Substance abuse in older adults: policy issues

By 2020, it is projected that the number of older adults needing treatment for drug and alcohol addictions will increase dramatically. Although Medicare covers treatment for mental health issues, copayments can be prohibitive for those with lower incomes. The Positive Aging Act, an amendment to the Public Health Service Act, is a policy alternative that could address substance abuse in the older adult population by (a) demonstrating ways of integrating mental health services for older adults into primary care settings, and (b) supporting the establishment and maintenance of interdisciplinary geriatric mental health outreach teams in community settings where older adults reside or receive social services. Increasing funding to states to emphasize primary care provider education on the detection, evaluation, and treatment of substance abuse problems of older adults has the potential to better meet the substance abuse needs of this population. Educating primary care providers, including gerontological nurses, to recognize signs of substance abuse in this population and providing age-appropriate treatment options is critically important but will require funding beyond what is currently available.     

Expanding nurses' roles in telemedicine & genetics services

This article presents nursing roles in telemedicine and genetics services. Telemedicine offers a promising solution to delivering comprehensive genetics services to children and families when travel, distance, and shortage of genetics professionals interfere with access. Nurses are already using telemedicine to provide nursing and healthcare services but have become involved in the delivery of genetics services via telemedicine only recently. Involving nurses in the development of telemedicine systems for genetics services is essential as they serve as a vital link between the patient, the healthcare system, and the community. Some of the emerging nursing roles in telemedicine include genetic family-health risk assessment, evaluation and counseling at the advanced practice level and at the primary care level, referral, participation in genetic evaluation and counseling, and family- and community-based care coordination and management. The Genomics Nurse Case Coordinator role as described by is presented as a means of further expanding the maternal-child health nursing role in supporting women and families to manage their own genomic health. Telemedicine offers nurses an opportunity to assure and provide quality genetic healthcare tailored to the individual and family's specific needs within their own community.     

Creating Healthy Futures: an innovative nurse-managed transition clinic for adolescents and young adults with special health care needs

The Creating Healthy Futures (CHF) clinic is an innovative, nurse-managed service model that provides comprehensive transition services to youth and young adults with special health care needs. Unlike other transition service models reported in the literature that are medically based, comprehensive transition services were coordinated by a family nurse practitioner who worked in close collaboration with an interagency team of pediatric and adult service providers. The Creating Healthy Futures (CHF) service model was originally developed for use in educational settings but was adapted for use in health care settings. The components of the service model are described in detail as a model for replication in other health care settings.     

Mental health nurses’ contributions to community mental health care: An Australian study

Australian mental health policy is focused on providing mental health care in the community setting and community mental health teams provide services to clients in a shared model with primary care. The historical literature reports that community mental health nurses’ experience high levels of stress and are often allocated the most complex and challenging clients managed by the team. Yet information on their specific roles remains limited. This paper reports on research conducted at one Australian public mental health service to identify the components of the community mental health nursing role and to quantify the time nurses spent in each component during the study period. Six focus groups were conducted with community mental health nurses to identify their perceived role within the team. Data analysis identified 18 components of which 10 were related to direct clinical contact with clients and eight covered administrative and care coordination activities. A data collection tool based on the findings of the focus groups was designed and nurses recorded workload data on the tool in 15‐min intervals over a 4‐week period. Seventeen nurses collected 1528 hours of data. Internal coordination of care was identified as the top workload item followed by clinical documentation and national data collection responsibilities supporting the complexity of the community mental health nursing role. The high rating attached to the internal coordination of care role demonstrates an important contribution that community mental health nurses make to the functioning of the team and the delivery of quality mental health care.     

Transitioning to adult health care facilities for young adults with a chronic condition

Youth with chronic conditions and special health care needs are surviving into adulthood. In certain circumstances, these youth may choose to remain with their pediatricians for their health care needs. However, most youth will require complex coordinated care in order for them to live full and productive lives to the best that they are able. Issues such as independence and dependence, educational and vocational choices, and insurance are important in transitioning to an adult-focused system of health care. This article addresses strategies that will assist young adults with the process of transitioning from pediatric care centers to adult health care centers. Despite the importance of providing a transition program, few transition programs exist for young people with chronic conditions (Sawyer, Blair, & Bowes, 1997). This article will also discuss barriers to the transition process.     

Models of case management for working with young children: implications for mental health nurses

The care of children with behavioural disorders/mental illnesses is an important and emerging role for mental health nurses. Unfortunately, there is little evidence on which to base their practice. Children, because of their rapid emotional, physical, and cognitive development, and their dependence on their families, need special consideration in their mental health care. The limited evidence available indicates that this special consideration should include a focus, not only on the child, but also on the parents and social and school networks of the child. Evidence from the adult literature indicates the most effective case management models are the ones in which the case manager offers as many services as possible, including talking therapies. This also seems to be true when working with children. Mental health nurses, because of their background and commitment to holistic care, are ideally suited to offer this type of service. However, mental health nurses have not been good at articulating what they do. This can limit the recognition of the contribution they make and their opportunities.