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

Overview

Journal HIV AIDS (Auckl)

Publisher Dove Medical Press

Specialty Infectious Diseases

Date 2011 Nov 19

PMID 22096382

Citations 25

Authors

Maureen E Lyon

Patricia A Garvie

Linda Briggs

Jianping He

Robert Malow

Lawrence J DAngelo

Robert McCarter

Affiliations

Soon will be listed here.

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.

Citing Articles

A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and shared decision-making.

van Teunenbroek K, Mulder R, van Heel D, Fahner J, de Vos-Broerse M, Verheijden J BMC Palliat Care. 2024; 23(1):270.

PMID: 39578755 PMC: 11585104. DOI: 10.1186/s12904-024-01568-3.

Advance Care Planning for Children With Rare Diseases: A Pilot RCT.

Lyon M, Fraser J, Thompkins J, Clark H, Brodie N, Detwiler K Pediatrics. 2024; 153(6).

PMID: 38699801 PMC: 11153326. DOI: 10.1542/peds.2023-064557.

Palliative care for children: methodology for the development of a national clinical practice guideline.

van Teunenbroek K, Kremer L, Verhagen A, Verheijden J, Rippen H, Borggreve B BMC Palliat Care. 2023; 22(1):193.

PMID: 38041060 PMC: 10691037. DOI: 10.1186/s12904-023-01293-3.

Palliative Care Interventions Among Adolescents and Young Adults with Serious Illness: A Scoping Review.

Newman A, Kenney A, Witkowski E, Karst J, Lerret S, Davies W Clin Pract Pediatr Psychol. 2023; 11(3):262-273.

PMID: 37753528 PMC: 10519447. DOI: 10.1037/cpp0000486.

Pediatric Advance Care Planning: A Scoping Review.

Lusney N, van Breemen C, Lim E, Pawliuk C, Hussein Z Children (Basel). 2023; 10(7).

PMID: 37508676 PMC: 10378635. DOI: 10.3390/children10071179.

References

Power C, Selnes O, Grim J, McArthur J . HIV Dementia Scale: a rapid screening test. J Acquir Immune Defic Syndr Hum Retrovirol. 1995; 8(3):273-8. DOI: 10.1097/00042560-199503010-00008. View

Degenholtz H, Arnold R, Meisel A, Lave J . Persistence of racial disparities in advance care plan documents among nursing home residents. J Am Geriatr Soc. 2002; 50(2):378-81. DOI: 10.1046/j.1532-5415.2002.50073.x. View

Lyon M, Woodward K . Nonstigmatizing ways to engage HIV-positive African-American teens in mental health and support services: a commentary. J Natl Med Assoc. 2003; 95(3):196-200. PMC: 2594413. View

Thompson B, Lawson D, Cooke M . Do patients' ethnic and social factors influence the use of do-not-resuscitate orders?. Ethn Dis. 1999; 9(1):132-9. View

Emanuel E, Fairclough D, Emanuel L . Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA. 2000; 284(19):2460-8. DOI: 10.1001/jama.284.19.2460. View

McConnell M, Byers R, Frederick T, Peters V, Dominguez K, Sukalac T . Trends in antiretroviral therapy use and survival rates for a large cohort of HIV-infected children and adolescents in the United States, 1989-2001. J Acquir Immune Defic Syndr. 2005; 38(4):488-94. DOI: 10.1097/01.qai.0000134744.72079.cc. View

Brady M, Oleske J, Williams P, Elgie C, Mofenson L, Dankner W . Declines in mortality rates and changes in causes of death in HIV-1-infected children during the HAART era. J Acquir Immune Defic Syndr. 2009; 53(1):86-94. PMC: 2801894. DOI: 10.1097/QAI.0b013e3181b9869f. View

Bakitas M, Lyons K, Hegel M, Balan S, Brokaw F, Seville J . Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009; 302(7):741-9. PMC: 3657724. DOI: 10.1001/jama.2009.1198. View

Tulsky J . Interventions to enhance communication among patients, providers, and families. J Palliat Med. 2006; 8 Suppl 1:S95-102. DOI: 10.1089/jpm.2005.8.s-95. View

10.

King C, Katz S, Ghaziuddin N, Brand E, Hill E, McGovern L . Diagnosis and assessment of depression and suicidality using the NIMH Diagnostic Interview Schedule for Children (DISC-2.3). J Abnorm Child Psychol. 1997; 25(3):173-81. DOI: 10.1023/a:1025739730823. View

11.

Kirchhoff K, Kehl K . Recruiting participants in end-of-life research. Am J Hosp Palliat Care. 2007; 24(6):515-21. DOI: 10.1177/1049909107300551. View

12.

Varni J, Seid M, Kurtin P . PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001; 39(8):800-12. DOI: 10.1097/00005650-200108000-00006. View

13.

Wiener L, Ballard E, Brennan T, Battles H, Martinez P, Pao M . How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. J Palliat Med. 2009; 11(10):1309-13. PMC: 2650081. DOI: 10.1089/jpm.2008.0126. View

14.

Lilly C, De Meo D, Sonna L, Haley K, Massaro A, WALLACE R . An intensive communication intervention for the critically ill. Am J Med. 2000; 109(6):469-75. DOI: 10.1016/s0002-9343(00)00524-6. View

15.

Krakauer E, Crenner C, Fox K . Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc. 2002; 50(1):182-90. DOI: 10.1046/j.1532-5415.2002.50027.x. View

16.

Lang K, Chevako J, Blank E, Korom N, Kirk K, Gray A . Advance directives in a pediatric emergency department. Pediatrics. 1999; 103(4 Pt 1):826-30. DOI: 10.1542/peds.103.4.826. View

17.

Kiely D, Mitchell S, Marlow A, Murphy K, Morris J . Racial and state differences in the designation of advance directives in nursing home residents. J Am Geriatr Soc. 2002; 49(10):1346-52. DOI: 10.1046/j.1532-5415.2001.49263.x. View

18.

. 1993 revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. MMWR Recomm Rep. 1992; 41(RR-17):1-19. View

19.

Dickens D . Building competence in pediatric end-of-life care. J Palliat Med. 2009; 12(7):617-22. DOI: 10.1089/jpm.2009.0032. View

20.

Haas J, Weissman J, Cleary P, Goldberg J, Gatsonis C, Seage 3rd G . Discussion of preferences for life-sustaining care by persons with AIDS. Predictors of failure in patient-physician communication. Arch Intern Med. 1993; 153(10):1241-8. View