To Take or Not to Take: Decision-Making About Antiretroviral Treatment in People Living with HIV/AIDS

Abstract

Knowledge is limited regarding decision-making about antiretroviral treatment (ART) from the patient's perspective. This substudy of a longitudinal study of psychobiologic aspects of long-term survival, conducted in 2003, compares the rationales of HIV-positive individuals (n = 79) deciding to take or not to take ART. Inclusion criteria were HIV/AIDS symptoms, or CD4 nadir less than 350, or viral load greater than 55,000. Those not meeting any criteria for receiving ART (2/2003 U.S. DHHS treatment guidelines) were excluded. Diagnosis was on average 11 years ago; 36% were female, 42% African American, 28% Latino, 24% white, and 6% other. Qualitative content analysis of semistructured interviews identified 10 criteria for the decision to take or not to take ART: CD4/ viral load counts (87%), quality of life (85%), knowledge/beliefs about resistance (66%), mind-body beliefs (65%), adverse effects of ART (59%), easy-to-take regimen (58%), spirituality/worldview (58%), drug resistance (41%), experience of HIV/AIDS symptoms (39%), and preference for complementary/alternative medicine (17%). Participants choosing not to take ART (27%) preferred complementary/alternative medicine (r = 0.43, p < 0.001)1, perceived a better quality of life without ART (r = 0.32, p < 0.004), and weighted avoidance of adverse effects of ART more heavily (r = 0.24, p < 0.030) than participants taking ART (73%). Demographic characteristics related to taking ART were having a partner (r = 0.31, p < 0.008) and having health insurance (r = 0.26, p < 0.040). Decisions to take or not to take ART depend not only on patient medical characteristics, but also on individual beliefs about ART, complementary/alternative medicine, spirituality, and mind-body connection. HIV-positive individuals declining treatment place more weight on alternative medicine, avoiding adverse effects and perceiving a better quality of life through not taking ART.

Longitudinal Spiritual Coping with Trauma in People with HIV: Implications for Health Care

“…Conversely, when spirituality is a source of meaning and growth and important in medical decision making, PLWH are often comforted by sharing beliefs with their clinician. [15][16][17][18][48][49][50]52 This is why clinicians should not defer the spiritual assessment to others, although providing spiritual interventions is best left to experts in spiritual care. 47 Koenig et al 47 dovetails our own experience that we as clinicians benefit too from bringing spirituality back to medicine by experiencing both greater work and patient satisfaction.…”

“…18 Third, spirituality plays a role in medical decision-making, adherence, quality of life, and clinician-patient relationship. 12,15,16,18,[48][49][50]52 Finally, it is important to assess the spiritual needs in order to identify people who may benefit from spiritual intervention. Potentially, spirituality-based interventions may aid in trauma treatment, as some experimental studies suggest.…”

Stigma and discrimination associated with HIV/AIDS in health care settings: a comparative study in two hospitals of different categories in Douala-Cameroon

“…S & D associated with HIV is a complex social process which interacts with and reinforces existing S & D associated with gender, race and poverty (Vanden Driessche et al, 2009). Numerous studies have documented attitudes of healthcare providers toward people living with HIV (PLHIV) (Chan et al, 2008, Kremer et al, 2006, Oku et al, 2013, Vanden Driessche et al, 2009. Although the literature characterizes the attitudes and behaviour of healthcare providers as positive and respectful, many studies also report poor communication between patients and healthcare providers (Chan et al, 2008, Kremer et al, 2006, which functions as a major barrier in providing proper care for these patients (Tawfik and Kinoti, 2001).…”

Exploring drug users’ attitudes and decisions regarding hepatitis C (HCV) treatment in the U.S.

“…Some studies have also identified patient level barriers to the use of health services among people with substance abuse histories. For instance, research conducted with people living with HIV/AIDS found that individuals' decisions to take or not to take antiretroviral treatment were influenced by their perceptions about the treatment and alternative therapies, spirituality, and desire to avoid adverse side effects (Kremer, Ironson, Schneiderman, & Hautzinger, 2006). However, few studies have explored HCV-positive drug users' attitudes about HCV pharmacological therapy or the decisions they make when contemplating HCV treatment.…”