HIV/AIDS patients’ perspectives on adhering to regimens containing protease inhibitors

Abstract

OBJECTIVE:To gather qualitative data regarding HIV/AIDS patients' perspectives about HIV-1 protease inhibitors (PIs), and about their experiences taking and adhering to regimens containing PIs. DESIGN:Six focus groups of persons under care for HIV were conducted between September and November 1996 regarding participants' knowledge, awareness, experiences when taking, and adherence to antiretroviral regimens containing PIs. An identical discussion guide was used to facilitate all six groups. Focus group proceedings were audiotaped, transcribed, coded for themes, and analyzed qualitatively. SETTING: HIV/AIDS practices of three teaching hospitals and two community health centers. PATIENTS/PARTICIPANTS:Fifty-six patients with HIV disease: 28 men and 28 women. MEASUREMENTS AND MAIN RESULTS:Knowledge and positive impressions of PIs were prevalent among this diverse group of persons with HIV, and did not differ by race/ethnicity or gender. Most knew that these were new, potent medications for treating HIV/AIDS. Networks of persons with HIV and medical providers were the most important information sources. Those taking PIs were aware that adherence to the regimen is important, and most were using special strategies to maximize their own adherence, but expressed considerable frustration about the central role these medication regimens had assumed in their life. A subset who did not believe they would adhere to these regimens had declined treatment with them. Motivating factors for taking and adhering to these complex regimens were improving CD4 counts and viral loads and the patient-provider relationship. CONCLUSIONS:Among those with HIV/AIDS, awareness of PIs and their effectiveness is substantial, owing to the impact of informal networks and medical providers. This early positive "reputation" of PIs may enhance motivation for adherence. Those who are taking PIs invest substantial effort adhering to these complex regimens, but resent the need to make medications the focus of their lives.

Prevalence and determinants of nonadherence to highly active antiretroviral therapy among people living with HIV/AIDS in Ibadan, Nigeria

“…These findings are supported by various studies which reported that forgetting to take a dose as the most commonly seen predictors of poor adherence to therapy [12,16,17].…”

Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research

“…• The nature of the regimen (HAART regimen requires strict adherence and schedule of doses affects eating, sleeping, daily routines, social and recreational activities, sex, working life, social relationships, care-giving roles, studying, weight and thereby dominates life) [143][144][145][146][147][148][149][150][151][152] • Type of medication (HAART has frequent doses, high number of pills per day, and off-putting taste, smell, size and shape) 145,146,151,152 • Gender (women more sceptical regarding safety and efficacy of HAART than men, regimen impacts more on women than on men) 142,149,151 • Perceived efficacy of medication [142][143][144][148][149][150][151] • Lay evaluation of medication for efficacy (with HAART subjective rather than objective indicators given more weight) 143,[147][148][149][150] • Adverse effects (with HAART a/effects nasty, impacted on QoL and instilled distrust in medication and led to not taking drugs as prescribed as medication experienced as making you ill rather than better -again, subjective rather than objective indicators more important) [142][143][144][145][146][147][148][149][150][151]…”

“…• Informal networks/peers could influence either way 142,143 • Acceptance of HIV infection status (accepting it oneself and being able to disclose it to others) 152…”

“…• Drug holidays to cleanse body 143,144,152 • Taking medicines separately to avoid a/effects 144 • Reduce doses or stopping medicines to reduce a/effects 142,[147][148][149] • Altering regimen to make it more practicable. 142,[147][148][149] (This latter group could be 'stable purposeful non adherents', i.e.…”

“…• Focus on getting fix 152 • Being busy 148,151 • Holidays, being away from home 151 • Avoid taking medicines in public for fear of disclosure 143,145,148,[150][151][152] Purposeful non-adherence (includes stable purposeful non adherents)…”