The influence of religious beliefs and practices on health care decision-making among HIV positive adolescents

ABSTRACT

It is unknown if religiousness/spirituality influences end-of-life treatment preferences among adolescents. Investigators assessed whether religiousness/spirituality moderates the relationship between an advance care planning intervention and end-of-life treatment preferences among 85 primarily African-American adolescents living with HIV/AIDS in outpatient-hospital-based HIV-specialty clinics in the United States. Adolescents aged 14–21 years living with HIV/AIDS and their families were randomized to three-weekly-60-minute sessions either: advance care planning (survey, goals of care conversation, advance directive); or control (developmental history, safety tips, nutrition/exercise). At 3-months post-intervention the intervention effect (decreasing the likelihood of choosing to continue treatments in all situations) was significantly moderated by religiousness/spirituality. Highly religious/spiritual adolescents were four times more likely to choose to continue treatments in all situations. Thus, intensive treatments at end-of-life may represent health equity, rather than health disparity. The belief believed that HIV is a punishment from God at baseline (15%, 14/94) was not associated with end-of-life treatment preferences. Twelve percent (11/94) reported they had stopped taking HIV medications for more than 3 days because of the belief in a miracle. Religiousness moderates adolescent’s medical decision-making. Adolescents who believe in miracles should receive chaplaincy referrals to help maintain medication adherence.

KEYWORDS:

• Adolescent
• advance care planning
• decision-making
• religiousness
• spirituality
• end-of-life treatment preferences
• medication adherence

Acknowledgements

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The following institutions and individuals in addition to the co-authors participated in FACE 4972 Adolescent Palliative Care Consortium. Co-Investigators: Respecting Choices: Linda Briggs; Children’s National Health System: Natella Rakhmanina, Pamela Hinds, Tomas Silber, and Kathleen Ennis-Durstein; St Jude Children’s Research Hospital: Megan Wilkins, Thomas Wride and Ryan Heine; University of Miami-Miller School of Medicine Lawrence Friedman and Ana Garcia; Howard University Hospital: Rana Sohail and Patricia Houston; Children’s Diagnostic & Treatment Center Ana Puga, Sandra Navarro and Jamie Blood. Thanks also to our many clinical coordinators and research assistants. We would also like to remember with deep gratitude the data manager and consultants who died during the course of the study, Saied Goudarzi, John R. Anderson, and Robert M. Malow. We thank the members of our Safety Monitoring Committee Beatrice Kraus, Connie Trexler and Bruce Rapkin who guided us safely through this protocol. We thank our adolescent and family participants without whom this research could not have been completed.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was supported by the National Institute of Nursing Research of the National Institutes of Health [R01 NR012711-05]. Space for registration and meeting with participants at children’s National was funded by the National Institute of Health, National Center for Advancing Translational Sciences, CTSI-CN UL1RR031988.