Our goals are to enhance quality of life and to integrate effective EOL care throughout the course of treatment for adolescents living with HIV/AIDS, as well as to test an intervention to support HIV positive adolescents and their family members in order to prevent depression and anxiety. These goals are consistent with the NIH 2006 Plan for HIV Related Research (NIH, 2004, pp. 260-261).
Our specific aims are 1) to adapt and standardize interventions already established as efficacious for use with a new group: HIV positive adolescents and their families;2) to pilot test the feasibility and acceptability of the Family Centered ACP intervention;3) to estimate the effect of the intervention on adaptive coping, psychological adjustment, quality of life, plans. Stage of illness will also be studied. More than 30,000 adolescents in the U. S. die annually from the effects of all chronic illnesses (Mineno, et al., 2002). EOL care for these patients is a public health issue (Freyer, 2004; Rao, et al., 2002), because of its high burden and potential for the prevention of suffering. We will recruit from two sites and enroll 40 (N=80) adolescent/legal guardian or surrogate dyads. Temporarily not ready dyads will be placed in an observational group. We will randomly assign 35 dyads to either the Family Centered ACP intervention (n=20) or the Adolescent Health Control (n=15). The format is three 60 to 90 minute sessions: (1) structured EOL survey; (2) Family Centered ACP interview; (3) optional Family Problem Solving. Standardized, self-report measures will be administered at baseline, immediate post intervention and 3 month follow-up. To assess the feasibility and acceptance of the intervention in Aim 2, frequency distributions in Stata 8 will be used to estimate each of the indicators of performance from enrollment to data completeness. Analysis of covariance models will be used to estimate the effect of the intervention on hypothesized outcomes in Aim 3. The NIH Strategic Plan (IOM, 2003) to reduce health disparities is relevant to this study, which aims to improve the quality of life for a condition that disproportionately affects minorities, as is the NIH Statement on Improving EOL Care (Dec.6-8, 2004) to increase the study of minorities and children who are underrepresented in EOL research. Careful research in psychologically sensitive areas such as EOL care is consistent with IOM recommendations (IOM, 2002) and the NIH Roadmap intention to discourage """"""""risk-adverse"""""""" research and to encourage innovation (IOM, 2003).

National Institute of Health (NIH)
National Institute of Mental Health (NIMH)
Planning Grant (R34)
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Special Emphasis Panel (ZMH1-ERB-D (05))
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Kamath, Susannah M Allison
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Children's Research Institute
United States
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Lyon, Maureen E; Garvie, Patricia; He, Jianping et al. (2014) Spiritual well-being among HIV-infected adolescents and their families. J Relig Health 53:637-53
Garvie, Patricia A; He, Jianping; Wang, Jichuan et al. (2012) An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families. J Pain Symptom Manage 44:373-85.e29
Lyon, Maureen E; Garvie, Patricia A; Kao, Ellin et al. (2011) Spirituality in HIV-infected adolescents and their families: FAmily CEntered (FACE) Advance Care Planning and medication adherence. J Adolesc Health 48:633-6
Lyon, Maureen E; Garvie, Patricia A; Briggs, Linda et al. (2010) Is it safe? Talking to teens with HIV/AIDS about death and dying: a 3-month evaluation of Family Centered Advance Care (FACE) planning - anxiety, depression, quality of life. HIV AIDS (Auckl) 2:27-37
Lyon, Maureen E; Garvie, Patricia A; Briggs, Linda et al. (2009) Development, feasibility, and acceptability of the Family/Adolescent-Centered (FACE) Advance Care Planning intervention for adolescents with HIV. J Palliat Med 12:363-72
Lyon, Maureen E; Garvie, Patricia A; McCarter, Robert et al. (2009) Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics 123:e199-206