Family Centered Advanced Care Planning for Adolescents With HIV/AIDS and Their Families

More than 30,000 adolescents in the United States die annually from the effects of chronic illnesses. The anxiety from facing a terminal illness often hinders adolescents in making decisions about their own end-of-life (EOL) care. Although minors' preferences are not legally binding, legislature, research, and professional guidelines all recommend that adolescent patients become involved in EOL decisions as part of routine intervention while they are stable. Family Centered Advance Care Planning (FCACP) is an intervention that facilitates EOL discussion among adolescents, their families, and their care providers. This pilot study will examine FCACP's effects on adaptive coping, psychological adjustment, quality of life, and plans and actions in HIV infected adolescents. The study will also provide feedback used for improving the FCACP Web site.

This study will include HIV or AIDS infected adolescents ranging in age from 14 to 21 who will jointly enroll with a selected surrogate older than 21. The adolescent/surrogate pairs will be randomly assigned to receive either the FCACP intervention or a health education control intervention. Pairs not immediately ready to participate will form an observational group. Pairs in the FCACP group will meet with a trained facilitator weekly for a 60- to 90-minute session for a total of 3 weeks. During the first session, participants will take the Lyon Advance Care Planning Survey. The second session will consist of the Respecting Choices Interview, where patients will discuss treatment preferences. The Family Problem-Solving session will be last, culminating with the patient's completion of an advance directive. The control groups will follow the same meeting schedule, but will receive health education sessions, not FCACP sessions. Standardized self-report measures will be administered upon entry, after completion of the sessions, and at a 3-month follow up. Usage data will also be analyzed regarding feasibility and acceptability of FCACP as a standard treatment.

Inclusion criteria

Adolescent Eligibility Criteria:

• Diagnosed with HIV/AIDS
• Between the ages of 14 and 21 years
• Aware of his or her HIV status
• Able to speak English
• Intelligence Quotient (IQ) greater than 69 (all patients have IQ testing results in chart as part of standard of care)
• Consent from the legal guardian if between ages of 14 and 17
• Consent from the surrogate if between ages of 18 and 21
• Assent from adolescent aged 14 to 17
• Consent from adolescent aged 18 to 21

Legal Guardian Eligibility Criteria (for guardians of adolescents aged 14 to 17):

• Adolescent is willing to discuss problems related to HIV with him/her
• Age 21 or older
• Able to speak English
• Legal guardian

Surrogate Eligibility Criteria:

• Selected by adolescent aged 18 to 21
• Age 21 or older
• Willing to discuss problems related to HIV and EOL
• Able to speak English

Exclusion criteria

For All Participants:

• Depression in the moderate to severe range on Beck Depression Inventory
• Unaware of HIV status of self, or if proxy, of adolescent
• Presence of HIV dementia, determined at screening using the HIV Dementia Scale
• Active homicidality or suicidality, determined at baseline screening by psychologist or researcher