Special Issue on Children and Adolescents With Intellectual and Developmental Disabilities

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Due to improved medical care and technology, there is a large and ever-increasing population of children and adolescents with chronic physical and cognitive disabilities, a portion of whom have intellectual and developmental disabilities (I/DD). There are many terms in current use to define I/DD, including mental retardation, developmental disabilities, and special health care needs. Definitions for these terms have been developed by professional organizations, the federal government, and the World Health Organization. Limitations in adaptive functioning and development of the condition in the first 18 to 22 years of life are the mutual components of the various definitions with subaverage intellectual functioning specific to mental retardation/intellectual disability. Intellectual/developmental disability etiologies encompass conditions due to genetics, birth defects, trauma, and infection and include children and adolescents with Down syndrome, epilepsy, hearing/vision disabilities, and autism. Van Dyck et al. (U. S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, 2004) identified 9.4 million children (12.8%) with special health care needs in the United States in 2001. This significant population emphasizes the importance of pediatric nurses having the knowledge and skills to care for them.

Historically, the I/DD population has not been valued or visible and has experienced significant stigmatization. Often confined to institutions, society hid them from view. In the last 4 decades, there has been a dramatic shift in social and health policies with the focus on caring for and rearing these children at home, attending school, and preparing them to function as adults in work and social environments.

The purpose of this special issue is to increase the knowledge and sensitivity of pediatric nurses about common issues that these children, adolescents, and families encounter and to provide appropriate interventions. In Faux's article on recent knowledge regarding the etiologies of selected I/DD conditions, one can see that the outcomes of the Human Genome Project have changed our understanding of genetic conditions, how they are caused, and their interaction with the environment. Pediatric nurses must have an accurate understanding of genetic fundamentals of I/DD disorders to keep their practice current and comprehensive.

There is a long-held popular belief that having a child with an I/DD is a universally negative event, leading to long-term parental suffering (i.e., chronic sorrow) and negative emotional and psychological sequelae for other family members. In contrast, researchers are exploring the resiliency of these families and their parenting experiences with children with chronic conditions. Van Riper frames her study to examine how families with a child with Down syndrome may view it as a positive, strengthening experience.

Gambol describes the often ignored and rarely discussed issues of sexuality and reproductive issues of adolescents with PKU. She emphasizes the need for pediatric nurses to be able to assist adolescents in making informed decisions about their particular condition, treatments, and pregnancy implications.

Transition of this population from adolescence to adulthood is revisited by Betz. Although there was intense focus in the 1980s on transition, there has been a reduced emphasis on the issue; recently, there has been a renewed emphasis for better and greater inclusion of these soon-to-be adults in all facets of community life.

Finally, two book reviews providing historical insight into nursing's impact on the field of I/DD (Nehring, 1999), and the breadth of nursing's genetic clinical practice (Lashley, 2005) is included. Readers may also want to consult the March 2003 issue of Nursing Clinics of North America for further description of the roles and responsibilities of nurses.

Pediatric nurses must have the knowledge and skills to care not only for children and adolescents with I/DD but also for their families, encompassing all aspects of their lives. They must be aware of the genetic implications and condition trajectories, and anticipatory guidance must be implemented for persons with I/DD and their families across their life spans.

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References 

1. Lashley FR. Clinical genetics in nursing practice. 3rd ed.. New York: Springer Publishing Company; 2005;
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2. Nehring WM. A history of nursing in the field of mental retardation and developmental disabilities. Washington, DC: American Association on Mental Retardation; 1999;
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3. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau . The national survey of children with special health care needs. Chartbook 2001. Rockville, MD: U.S. Department of Health and Human Services; 2004;
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