Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle

Our goal is to advance palliative care to adolescents and their families. We hope our study will decrease suffering (psychological, spiritual, physical) and increase quality of life (QOL). Left unprepared for end-of-life decisions, miscommunication and disagreements may result in families being charged with neglect or court battles over treatment choices. FAmily CEntered (FACE) Advance Care Planning helps prepare adolescents with HIV/AIDS and their families for future medical decisions. We hope to increase families' understanding of their teens' wishes for end-of-life care and to decrease conflict. We will also study communication and spiritual struggle Families will be randomized into the either the Control (N=65 families) or FACE Intervention (N=65 families). FACE families will meet with a trained/certified researcher for three 60- to 90-minute sessions scheduled one week apart: Session 1: Lyon Advance Care Planning Survey© - Adolescent and Surrogate Versions: Session 2: The Respecting Choices Interview® Session 3: Completion of The Five Wishes©. Control families will also meet with a researcher for three 60-to 90-minute sessions scheduled one week apart: Session 1: Developmental History, Session 2: Safety Tips, and Session 3: Nutrition. Questionnaires will be administered five times, when first seen, at 3, 6, 12 and 18 months from the time of Session 3. Hypothesis 1: Compared to an active control, FACE will relieve psychological suffering by 1) increasing congruence in treatment preferences between teens with AIDS and their surrogates, 2) decreasing decisional conflict regarding EOL decision making for future medical treatment in adolescents with AIDS; 3) increasing quality communication about EOL care in adolescent/legal guardian or surrogate dyads; 4) and maximizing QOL.

Hypothesis 2: In addition to the direct effects, FACE will also indirectly affect QOL through dimensions of threat appraisal.

Hypothesis 3: FACE will have stronger effects on the QOL measures among patients who have less spiritual struggle.

Hypothesis 4: Spiritual struggle has both direct and indirect effects on hospitalization/dialysis use. FACE will also affect hospitalization/dialysis use indirectly through threat appraisal and HAART adherence.

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 moderators, 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© - Adolescent and Surrogate Versions: Session 2: The Respecting Choices Interview® Session 3: Completion of The Five Wishes©. 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: Safety Tips. 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.

Eligibility Criteria:
Adolescent Inclusion Criteria:

* Diagnosed ever with HIV;
* All ethnic groups;
* Knows HIV status;
* Speaks English;
* Absence of active homicidality or suicidality;
* Absence of HIV dementia;
* IQ \>69;
* Consent from the legal guardian for adolescents aged 14-17;
* Consent from the surrogate for adolescents aged 18-21;
* Assent from adolescent aged 14-17;
* Consent from adolescent aged 18-21;
* Absence of severe depression;
* Not in foster care

Legal Guardian Inclusion Criteria for Legal Guardians of Adolescents Age 14-17:

* Adolescent willingness to discuss problems related to HIV/AIDS with them;
* Age 18 or older;
* Ability to speak English;
* Absence of active homicidality, suicidality, or psychosis;
* Absence of HIV dementia;
* Legal guardian;
* Consent to participate; Consent for his/her adolescent to participate;
* Knows HIV status of adolescent;
* Absence of depression in the severe range;

Surrogate Inclusion Criteria for Adolescents Age 18-21:

* Selected by adolescent aged 18 to 21;
* Age 18 or older;
* Willingness to discuss problems related to HIV and end-of-life;
* Absence of active homicidality, suicidality, or psychosis;
* Absence of HIV dementia;
* Speaks English;
* Consent to participate;
* Knows HIV status of adolescent.
* Absence of severe depression;

Exclusion Criteria:

* adolescent or surrogate does not know HIV diagnosis
* being in foster care
* developmentally delayed
* scoring below the cut off on the HIV Dementia Scale
* scoring above the cut off for depressive symptoms on the Beck Depression Inventory
* homicidal, suicidal or psychotic on screening
* does not speak English