Today over 90% of all young people with special health care needs (SHCN), a group that includes youth with chronic illnesses, such as rheumatic diseases and asthma, survive into adulthood. This is exemplified by the improved long-term survival of young people with rheumatic diseases. The focus of outcome is now on the quality of their lives and not just their survival. There are three critical junctures for young people with SHCN: diagnosis, puberty, and school completion. Perhaps the most challenging of these is the transition to adulthood, a period of complex biological, social, and emotional change. This transition involves learning to move from (i) school to work, (ii) home to community, and (iii) pediatric- to adult-oriented health care. This chapter focuses on the steps involved for the young person with rheumatic disease as he or she moves into adulthood and the how a health care professional can help the successful transition of an individual with rheumatic disease from adolescence to adulthood.
From the perspective of a young person include, the goals of transition include: (i) being valued as a human being and treated with dignity; (ii) having opportunities for social experiences, dating, community involvement, recreation, and worship; (iii) obtaining education and/or job training; (iv) becoming interdependent, and (v) finding meaningful work for reasonable pay. To attain these goals, young people with rheumatic diseases will have to, first and foremost, attend to their health, including careful management of their condition and attention to preventive care issues. Health care professionals often pay more attention to the chronic illness than to assisting the young person with the skills they need to manage their illness. Studies in the United Kingdom have shown that young people want health care providers to acknowledge their lives beyond their disease and to assist them in preparing for transition (1,2). This chapter will explore the general principles of transition and then discuss the major areas of self-determination, school to work and post-secondary education, and pediatric to adult health care.
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If you suffer with asthma, you will no doubt be familiar with the uncomfortable sensations as your bronchial tubes begin to narrow and your muscles around them start to tighten. A sticky mucus known as phlegm begins to produce and increase within your bronchial tubes and you begin to wheeze, cough and struggle to breathe.