Our goal is to advance palliative care with children and their families aimed at relieving suffering (psychological, spiritual, physical) and maximizing quality of life. Left unprepared for end-of-life decisions, miscommunication and disagreements may result in families being charged with neglect, court battles and even legislative intervention. We propose building on our R34, evidence based model, the Family Centered (FACE) Advance Care Planning intervention, to test our full theoretical model examining the putative mediators and moderator, and spiritual struggle (negative religious coping) with a sicker group and adolescents with AIDS in an adequately powered randomized, clinical, 2-arm, controlled trial. FACE is a culturally sensitive and developmentally appropriate, manualized family intervention based on transactional stress and coping theory, which prepares adolescents with HIV/AIDS and their families for end-of-life decision-making through problem solving. Theoretically, threat appraisal is related to Lazarus'concept of primary appraisal, particularly the way in which an event threatens the child's goals or values. Spiritual struggle (negative religious coping) may be a source of distress, causing disparities in palliative care and outcomes. We will test the efficacy of the FACE intervention for increasing communication and congruence in end-of-life treatment preferences between teens with AIDS and their surrogates, and determine if increased congruence can be maintained over time. We will also examine the impact of the FACE intervention on decisional conflict, quality of communication, and patient quality of life. We will also evaluate hypothesized mediators (threat appraisal, HAART adherence) and moderator (spiritual struggle) of study outcomes, including hospitalizations. We will recruit from hospital-based clinics and randomize 130 adolescent/surrogate dyads (N=260 subjects) to either Control (N=65 dyads) or FACE Intervention (N=65 dyads). Participants with HIV dementia, severe depression, suicidality or homicidality or in foster care will not be allowed to participate. Three 60- to 90-minute sessions will be conducted with a certified interviewer at weekly intervals: FACE: Session 1: Lyon Advance Care Planning Survey(c) - Adolescent and Surrogate Versions: Session 2: The Respecting Choices Interview(R) Session 3: Completion of The Five Wishes(c). Control will also be administered in a family group format to control for time, attention, and Hawthorn effects: Session 1: Developmental History, Session 2: Safety Tips, and Session 3: Legacy audio/video. Standardized self-report measures will be administered at baseline, immediate post intervention (3 month), and 6, 12 and 18 month post intervention. Generalized estimating equation (GEE) will assess outcomes.

Public Health Relevance

This study aims to minimize suffering and maximize quality of life for adolescents with AIDS, a condition that disproportionately affects minorities through FAmily CEntered (FACE) Advance Care Planning for teens with AIDS. Death from AIDS often follows a period of chronic or progressing illness, where symptom control and support are needed. Public health has a role in ensuring equity of access to effective care and prevention of suffering through compassionate care and the adoption of improved approaches to palliative care for the approximately 400,000 children living in the U.S. with life limiting conditions.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
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Special Emphasis Panel (ZNR1-REV-T (01))
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Aziz, Noreen M
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Children's Research Institute
United States
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Lyon, Maureen E; Dallas, Ronald H; Garvie, Patricia A et al. (2017) Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families. BMJ Support Palliat Care :
Lyon, Maureen E; D'Angelo, Lawrence J; Dallas, Ronald H et al. (2017) A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning. AIDS Care 29:1287-1296
Lyon, Maureen E; Kimmel, Allison L; Cheng, Yao Iris et al. (2016) The Role of Religiousness/Spirituality in Health-Related Quality of Life Among Adolescents with HIV: A Latent Profile Analysis. J Relig Health 55:1688-99
Dallas, Ronald H; Kimmel, Allison; Wilkins, Megan L et al. (2016) Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV. Pediatrics 138:
Wilkins, Megan L; Dallas, Ronald H; Fanone, Kathleen E et al. (2013) Pediatric palliative care for youth with HIV/AIDS: systematic review of the literature. HIV AIDS (Auckl) 5:165-79
Dallas, Ronald H; Wilkins, Megan L; Wang, Jichuan et al. (2012) Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): design and methods. Contemp Clin Trials 33:1033-43