Assessment of Parental Needs

In a study using focus group methodology, parents of adolescents with JIA acknowledged that they found it difficult to "let go" of their son/ daughter but realized that it was important for them to become their own advocates (24). They suggested that health care providers could help them to facilitate increasing autonomy for their son/daughter by encouraging self-advocacy skills training for the adolescent. The parents suggested that the health professionals should actively involve the young person during the consultation and, ideally, ensure that he/she is able to see the same professional at each visit if the young person so chooses (i.e., continuity). Once parents realized that their son/daughter was capable, they could then gradually withdraw from the consultation and eventually wait outside the clinic room for part or all of the visit. The parents also saw this as an ideal opportunity for their own needs to be met (24). Meeting the parents' needs has been emphasized in the recent major policy documents on both sides of the Atlantic (25,26). These needs include support and preparation for transition and transfer to adult care; developing an understanding of adolescent development in the context of the chronic condition and their own important, dynamic role in the process as parents; provision of advice about the negotiation of boundaries, informational resources, and support services available both within the hospital and the local community. The resources in terms of staffing and clinic space required to meet these needs, however cannot be ignored with respect to such intervention, albeit integral to adolescent health care.

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