To tell or not to tell: Why people with HIV share or don't share with their physicians whether they are taking their medications as prescribed

Abstract

This qualitative study examines whether HIV-positive people (N = 79) tell their physicians whether they take antiretroviral treatment (ART) as prescribed and why. Interviews, analyzed with qualitative content-analysis, asked about taking/not taking ART and, if taking, whether they shared their reasons for non-adherence with their physician. Patients are more likely to inform physicians why they take than why they do not take ART (p < 0.01). Only half of those not taking ART shared the reasons for their decision with their physician. The six motives were: anticipation that physicians will not support the decision, cannot discuss feelings, lack of trust in physician's opinion, unable to discuss spiritual/ moral issues, no need for physician to know, and not seen physician yet. Of those taking ART, 21% did not tell their physician why they missed doses. The five motives were: not viewed as important, physician not asking, not seen physician yet, rarely non-adherent, no indications in surrogate markers. A significant proportion of patients are not taking their medications as prescribed and are not telling their physicians. To facilitate the chance that patients communicate with their physicians, physicians need to ask and, while giving the patients medical information, create a non-judgmental, respectful atmosphere where patients feel comfortable sharing their personal view.

‘Not Until I'm Absolutely Half-Dead and Have To:’ Accounting for Non-Use of Antiretroviral Therapy in Semi-Structured Interviews with People Living with HIV in Australia

“…[25][26][27] All of these early studies identified key reasons for non-use as including fear of short-and long-term side effects, concerns about the safety and effectiveness of pharmaceutical treatments, doubts about the need to commence treatment, and reluctance to commit to a daily medication regimen. Similar reasons for non-use have been reported in research conducted in relatively comparable settings including the UK, 28 Germany, 29 Poland, 30 the USA, [31][32][33] and Canada. 34,35 Preference for alternative medicines were observed in a number of these studies, but particularly in the German and US research, 29,36 and mistrust of medications and medical care providers was particularly stressed in research from the USA, as was the role of stigma and perceived cost of treatment.…”

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.…”

“…their life expectancy. [48][49][50] For example, if spiritual struggle is present, taking a spiritual assessment may help with resolution. 42,47,51 Opening the dialog about spiritual struggle, conflict, guilt, anger, and disengagement may prevent PLWH from a negative spiral of spiritual reactions or even initiate an individual's critical confrontation with negative religious beliefs such as karma or hell.…”

“…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.…”

What Latina Patients Don't Tell Their Doctors: A Qualitative Study

“…Nondisclosure of information necessary for proper treatment can have a detrimental effect on patients' health. 9 Barriers to disclosure include patients' thinking that certain information is not important 10 ; feelings of anxiety, stigma, and embarrassment…”