The technologies of medical care have greatly improved in the last decades to the extent that infants and children are surviving, and in some cases thriving over, conditions that were previously lethal. These children are not unique to North America. Children with complex medical conditions, chronic illnesses, or disabilities exist around the world. They grow and develop along with their 'normal' peers, presenting unique challenges to their respective health and educational systems due to their complex needs. Nurses around the world take care of them. No matter what country these children live in, particularly in the industrialized world where a comprehensive health care system is a source of great national pride, we know historically that they are an underserved population. Traditional systems of care fall short of reaching children with complex medical, developmental or behavioral problems adequately. Families struggle to find services for them.
In the United States, it is now estimated that up to 30% of children aged 18 or younger have a chronic condition (Newacheck & Halfon, 1998) and that approximately 20% of these children have more than one condition (Newacheck & Stoddard, 1994). Children with chronic disease and disability make up a large proportion of the hospitalized and community-based patients we serve. These conditions often impact on development or behaviors of the child, with many having serious influence on all aspects of daily life. Pediatric nurses from all nationalities are called upon to understand and meet the care requirements presented by these special children in a variety of settings, and it is always an additional challenge when the systems of care impose barriers.
Issue Focuses on Children with Special Health Care Needs
It is for these reasons that this issue of Pediatric Nursing tackles topics related to serving children with special health care needs, and offers articles that represent a variety of international perspectives. As our industrialized nation confronts its own sad track record of serving the most vulnerable of its citizens, we need to be cognizant of what nurses do in the rest of the world. It is important to periodically glimpse at the research and programs of care provided by nurses in other nations. With insights from countries different from our own we can be proud of some of our advances and humbled by some of our shortcomings.
In addition to the international CE Series in this issue on children with special health care needs, the launch of the Maternal and Child Health Bureau (MCHB) national 10-Year Action Plan, 'All Aboard the 2010 Express' is highlighted (see pages 429, 432) to remedy some of the barriers that exist in today's medical approach to care. In this country, as well as in many others, we recognize that children do best when they have access to comprehensive, family-centered, culturally competent, coordinated, and fully inclusive systems of service at the community level. This document, a companion to Healthy People 2010, and its associated educational activities scheduled for distribution in December 2001, promise to children with special health care needs a commitment of service by multiple professionals predicated on establishing a 'medical home.' The notion of a medical home is intended to be a broad, inclusive term, meaning a source of ongoing, comprehensive care by a primary care professional in the child's community. The needs of the child and the family are central to the medical home approach. Professionals who are part of the medical home ideally develop a trusting partnership with families, respecting their diversity, and recognizing that families are the constant in a child's life as well as their most important caretakers (Achieving Success for All Children and Youth with Special Health Care Needs: A 10-Year Action Plan to Accompany Healthy People 2010, 2001, p. 10).
Call to Action for Pediatric Nurses
These recommendations are consistent with what pediatric nurses in the U.S. and around the world do. In the pages of 'All Aboard the 2010 Express,' as the ideas of family-centered care are folded into the descriptions of a 'medical home,' it becomes clear that nurses need to be at the front of this train helping to set the action plan in place. In coordinating services with the child's identified 'medical home,' providers can ensure that children have continuity of care from visit-to-visit, from infancy through transition into adulthood, as an organized team with an accessible, comprehensive, central record that contains all pertinent information about the child in a way that assures confidentiality. Nurses can make this happen. In the coming months as this plan unfolds, beginning with the October 1st National Child Health Day established by Congress, nurses need to actively engage in state and community activities to educate all professionals, administrators and policy makers with these materials so that new systems of service can be developed.
References
Achieving Success for All Children and Youth with Special Health Care Needs: A 10-Year Action Plan to Accompany Healthy People 2010. (2001). Washington DC: Department of Health and Human Services, Maternal Child Health Bureau.
Newacheck, P.W., & Halfon, N. (1998). Prevalence and impact of disabling chronic conditions in childhood. American Journal of Public Health, 88, 610-617.
Newacheck, P.W., & Stoddard, J.J. (1994). Prevalence and impact of multiple childhood chronic illnesses. The Journal of Pediatrics, 124, 40-48.
