Disclosing the diagnosis of human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS) to a child is a controversial and emotionally charged issue amongst both the health care communities and parents and caregivers of these children. This paper provides a systematic review of research on disclosure of pediatric HIV infection. The paper begins with a brief discussion of disclosure drawing from research on pediatric cancer. Next, we review the available research including patterns of disclosure, factors associated with disclosure and non-disclosure, and the effect of disclosure on psychological health and adherence. A review of published intervention studies is also included. While no consensus on when the diagnosis of HIV should be disclosed to a child or the psychological outcomes associated with disclosure was found, clinical consensus on several issues related to working with families was identified. We apply this literature to clinical practice and suggest avenues and directions for future research.
AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care.
Background Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language. Objective To explore whether adolescents and young adults living with a life-limiting illness find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding EOL care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document. Methods Adolescents and young adults with metastatic cancer or pediatric human immunodeficiency virus (HIV)-1 infection were presented Five Wishes®, an advance directive document for adults. Each participant was asked to critically evaluate each wish in terms of whether the concepts within were considered (1) appropriate to ask individuals the participant’s age; (2) helpful for other people the participant’s age to think about; (3) helpful to the participant to think about; (4) stressful to contemplate. Participants were also asked to suggest modifications and additions to the document. Results Twenty patients completed the survey. Ninety-five percent of the participants reported that an advance directive like Five Wishes® would be “helpful” or “very helpful” to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes® “stressful” or “very stressful.” Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making. Conclusions An advance care planning document may be appropriate and helpful for adolescents and young adults living with a serious illness. Future research should further validate the preferences identified by participants and explore whether an age-appropriate document can improve communication with family and staff in EOL care.
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