Confidentiality

When adolescents are asked to name the important attributes of an adolescent friendly service, confidentiality appears at the top of their list (11). Confidentiality underpins both the development of a therapeutic alliance and the development of future relationships with health professionals and is, by definition, based on mutual trust. If confidentiality is not assured, health-seeking behaviors during adolescence may be negatively influenced (12). In a U.S.-based study, over half of young people reported health concerns they wished to keep private from their parents, and a quarter said they would forgo health care in some situations if their parents found out (12). Unfortunately, pediatric practices appear less likely than family medicine to offer confidential services to adolescents (13). Furthermore, adolescents may be unaware of their right to confidentiality. It is important to stress that the right to confidentiality exists independently of competence to consent to treatment. Consent, competence, and confidentiality for young people are fundamentals of adolescent health and core knowledge for health professionals involved in the care of young people (14-16). Confidentiality should ideally be assured in every consultation with individual young people and their right to confidentiality should be explained to their parent/caregivers (16). Professionals must ensure that the services they work in have policies and practices that foster confidentiality and competence among adolescents attending their services (Fig. 1).

A practical aspect of confidentiality is the opportunity for the young person to choose to be seen independently of their parents (Fig. 2). Adolescents with JIA report appreciation of the opportunity to be seen alone but find it difficult to deal with their parents when the latter want to be present during the consultation (17). In the context of a chronic illness, independent visits should be viewed as a matter of choice—is the young person choosing to have their parent with them or is the parent choosing? If adolescents do choose to have someone with them, is it because they do not have the skills or confidence to be seen alone? Preparation and skills training for independent visits are an integral part of adolescent and transitional care as young people learn how to become "new users" of health services previously accessed by their parents on their behalf (see Chapter 1). In the United Kingdom 40% to 50% of 15- to 16-year-olds see their GP on their

Welcome to the adolescent rheumatology clinic

Welcome to the adolescent rheumatology clinic

If you would like to see a particular doctor or team member on your own today, please just ask. It's your health. Have your say.

If you would like to see a particular doctor or team member on your own today, please just ask. It's your health. Have your say.

Figure 1 Waiting room poster advocating that young people be seen independently of their parents when they so choose. Source: Courtesy of London Adolescent Network Group.

Figure 2 Creating the opportunity for independent visits for young people in adolescent rheumatology clinics.

own (18) in contrast to only 16% to 27% of adolescents in rheumatology clinics (19-21). Furthermore, only 12% of adolescents (14- and 17-year-olds) with JIA were seeing their GP alone (20). Young people with another chronic illness—cystic fibrosis—feel that 13 to 16 years is the best time for them to be seen independently (22). Independent visits were reported to be one of the five main methods of "demonstrating transition" by providers of health care for adolescents with sickle cell disease in the United States (23) along with encouraging patients to accept more responsibility, providing literature, making the patient more financially responsible, and having family conferences to discuss transition. Independent visits have also been identified as a baseline predictor of health related quality-of-life in a large U. K. cohort of adolescents with JIA (24) and a predictor of successful transfer in a cardiology population (25).

The presence of a parent(s) has also been reported to impact on the quality of communication between adolescents and professionals (9,26). In a study of 313 adolescents (aged 11-21 years), discussion of sexual issues was related to the absence of a parent and the positive attitudes and/or apparent comfort of the professional (26). Of note, few adolescents initiated discussion of sexual issues, requiring a proactive approach by the professional (26).

The right of the young person to choose a chaperone must also not be forgotten, as for any patient, particularly for the psychologically and/or physically sensitive parts of the interview and/or examination. However, ideally they should be able to choose whether it be a parent, friend or another professional. The components of the physical examination to be performed should be explained to the young person at the outset (including why they are necessary) and a chaperone offered. If the patient chooses to decline the use of a chaperone, it should be documented. There are useful guidelines available addressing such issues for the interested reader (27,28).

The impact of the presence of other strangers during the consultation, whether students or other professionals, has similarly been reported to impair communication between young people with chronic illnesse and professionals (9,17). This, however, has major implications to potential training opportunities in adolescent rheumatology. Adolescents with JIA reported perceived erosion of trust in the presence of such strangers (e.g., students, trainees), although they acknowledged that professionals needed to learn. Furthermore, they were willing to be involved in such training, but suggested that it not take place during their appointments (17).

If there is another team member in the room for some reason, it can be useful to consider using him or her in either a chaperoning or de-briefing role, e.g., walking out with the young person and checking to see if he or she is happy with everything before leaving the clinic.

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