Dataset Information

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.

ABSTRACT:

Purpose

To determine the safety of engaging HIV-positive (HIV+) adolescents in a Family Centered Advance Care (FACE) planning intervention.

Patients and methods

We conducted a 2-armed, randomized controlled clinical trial in 2 hospital-based outpatient clinics from 2006-2008 with HIV+ adolescents and their surrogates (n = 76). Three 60-90 minutes sessions were conducted weekly. FACE intervention groups received: Lyon FCACP Survey(©), the Respecting Choices(®) interview, and completion of The Five Wishes(©). The Healthy Living Control (HLC) received: Developmental History, Healthy Tips, Future Planning (vocational, school or vocational rehabilitation). Three-month post-intervention outcomes were: completion of advance directive (Five Wishes(©)); psychological adjustment (Beck Depression, Anxiety Inventories); quality of life (PedsQL(™)); and HIV symptoms (General Health Self-Assessment).

Results

Adolescents had a mean age, 16 years; 40% male; 92% African-American; 68% with perinatally acquired HIV, 29% had AIDS diagnosis. FACE participants completed advance directives more than controls, using time matched comparison (P < 0.001). Neither anxiety, nor depression, increased at clinically or statistically significant levels post-intervention. FACE adolescents maintained quality of life. FACE families perceived their adolescents as worsening in their school (P = 0.018) and emotional (P = 0.029) quality of life at 3 months, compared with controls.

Conclusions

Participating in advance care planning did not unduly distress HIV+ adolescents.

SUBMITTER: Lyon ME

PROVIDER: S-EPMC3218704 | biostudies-literature | 2010

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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.

Lyon Maureen E ME Garvie Patricia A PA Briggs Linda L He Jianping J Malow Robert R D'Angelo Lawrence J LJ McCarter Robert R

HIV/AIDS (Auckland, N.Z.) 20100218

<h4>Purpose</h4>To determine the safety of engaging HIV-positive (HIV+) adolescents in a Family Centered Advance Care (FACE) planning intervention.<h4>Patients and methods</h4>We conducted a 2-armed, randomized controlled clinical trial in 2 hospital-based outpatient clinics from 2006-2008 with HIV+ adolescents and their surrogates (n = 76). Three 60-90 minutes sessions were conducted weekly. FACE intervention groups received: Lyon FCACP Survey(©), the Respecting Choices(®) interview, and comple ...[more]

PMID: 22096382

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Project description:BackgroundPatients undergoing high-risk surgery are at a risk of sudden deterioration of their health. This study aimed to examine the feasibility of the development of two patient decision aids (PtDAs) to assist patients undergoing high-risk surgeries in informed decision-making about their medical care in a crisis.MethodsThis field testing implemented two PtDAs that met the international criteria developed by the researchers for patients before surgery. Study participants were patients scheduled to be admitted to the intensive care unit after surgery at one acute care hospital in Japan and their families. The study used a mixed-methods approach. The primary outcome was patients' decision satisfaction evaluated by the SURE test. Secondary outcomes were the perception of the need to discuss advance care planning (ACP) before surgery and mental health status. The families were also surveyed on their confidence in proxy decision-making (NRS: 0-10, quantitative data). In addition, interviews were conducted after discharge to assess the acceptability of PtDAs. Data were collected before (preoperative outpatients, baseline: T0) and after providing PtDAs (in the hospital: T1) and following discharge (T2, T3).ResultsNine patients were enrolled, of whom seven agreed to participate (including their families). The SURE test scores (mean ± SD) were 2.1 ± 1.2 (T0), 3.4 ± 0.8 (T2), and 3.9 ± 0.4 (T3). The need to discuss ACP before surgery was 8.7 ± 1.3 (T1) and 9.1 ± 0.9 (T2). The degree of confidence in family surrogate decision-making was 6.1 ± 2.5 (T0), 7.7 ± 1.4 (T1), and 8.1 ± 1.5 (T2). The patients reported that using PtDAs provided an opportunity to share their thoughts with their families and inspired them to start mapping their life plans. Additionally, patients wanted to share and discuss their decision-making process with medical professionals after the surgery.ConclusionsPtDAs supporting ACP in patients undergoing high-risk surgery were developed, evaluated, and accepted. However, they did not involve any discussion of patients' ACP treatment wishes with their families. Medical providers should be coached to provide adequate support to patients. In the future, larger studies evaluating the effectiveness of PtDAs are necessary.

Dataset Information

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.

Purpose

Patients and methods

Results

Conclusions

Publications

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.

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