"Nothing about us, without us" is a phrase that is often heard during conversations with young people in today's world. Consultation with and the participation of young people is a vital component of adolescent health service, research, and development (1,2). Their rights "to be heard" are enshrined in Article 12 of the United Nations Convention on the Rights of the Child (3). It asserts that children and young people should be able to express their views on all matters of concern to them and to have those views taken seriously in accordance with their age and maturity (3).
Young people have had few opportunities to evaluate the health services that they receive (4-9). In a multicenter U.K. study, the perceived quality of health care for young people with juvenile idiopathic arthritis (JIA) was significantly lower than they would like (10). It is important that the views of young people are not inferred by either their parents or professionals, who often have discrepant agendas for their health care (6,7,11-13). Marginalizing young people's views may result in practices and policies that have little meaning for those they are intended to benefit. Cleary highlighted is that there are two primary ways patients exert influence over the quality of their health care—exit and voice (14). Children and young people are unlikely to use the power of the former. Health care providers should therefore continue to advocate opportunities and skills training (15) for young people to be able to "give opinions" that are listened to, respected, and, when necessary, acted upon (1).
This chapter has therefore been included to enable the voices of young people to be heard with respect to the adolescent rheumatology professionals and services they would like. Contributions to the chapter were invited via the authorship of this book in addition to previously unpublished anonymous quotes from a series of focus groups held in the United Kingdom to determine the unmet transitional care needs of adolescents with JIA (16).
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