Objective: Antiretroviral medications have improved the health of persons living with HIV/AIDS (PLWHA), extending their life expectancy. The effectiveness of treatment, however, depends on strict adherence. While similar to adherence in other chronic illnesses, PLWHA who are trying to adhere to HIV medications face difficult challenges. Unfortunately, little is known about the strategies PLWHA use to adhere to medications. Such information will be invaluable is the design of interventions to assist PLWHA is developing and maintaining medication adherence. This study provided foundational information for developing such interventions by describing the medication adherence experiences of PLWHA who had been taking antiretrovirals for at least 6 months. Design: Exploratory, qualitative. Population, Sample, Setting, Years: The sample was comprised of eleven PLWHA taking antiretroviral medications. The PI purposively recruited participants who represented the demographics of the population. Interviews were conducted in the residences of participants and in private conference rooms of community agencies. Data were collected in 2000. Concepts: Medication adherence, barriers, and strategies. Methods: The essential question was, “Tell me about your experiences taking your medications.” All interviews were audio-recorded. To minimize the risk to confidentiality, each participant selected a pseudonym for use during the interview. All interviews were conducted by the principle investigator. Audio-tapes, identified only by number or pseudonym, were transcribed by research assistants. The PI checked each transcription for accuracy by listening to the tape while reading the transcript. The PI underlined key passages representing key ideas during the next reading of the transcripts. These passages were written on 3X5 inch cards identified by the participant number and transcript line. Using constant comparison, the quote cards were sorted into themes and given descriptive labels. Findings: The sample was comprised of six men and five women. They ranged in age from 33 to 58 years. Six of the participants were Caucasian, three African American, and two Hispanic. The typical participant was low-income and unemployed or too ill to work Five themes emerged from the transcripts. Choosing life was identified as a theme because most of the participants were severely ill when prescribed medications. One man said, “Ah, just the simple fact that if I didn’t do it, I would not live. That was enough to get me to do it.” Participants also removed from their lives conditions they perceived as interfering with medication adherence. One woman who stopped her use of illegal drugs said she realized she needed to change “something so I’ll live before I fade away.” Riding it out described the period of adjustment, especially enduring the initial side effects. One participant said, “You just get sick. Let it take its toll and then you’ll get over it.” Another said, “I kept taking them because I knew it was just temporary.” Figuring it out involved trying different strategies to ensure adherence. Participants described using pill organizers, routines or schedules, and alarms. One participant had experimented with different foods until she found those she could eat with her medications while another had adjusted the timing of doses to allow her stomach a “chance to rest” before the next dose. Sticking to it was a theme with internal and external components. The internal component was overcoming psychological resistance to taking medications, as the participant who repeatedly said, “I complain within myself, but I take them anyway.” The external components were the family, friends, or providers who encouraged adherence. The final theme, realizing the benefits, included improved lab values and physical health, greater ease in adhering to the regimen, personal growth, and dreams for the future. Conclusions: The findings reflected the stages of the Transtheoretical Model of Change (Prochaska & DiClemente, 1994). During the contemplation stage, participants made conscious decisions to choose life. The parallel processes of riding it out and figuring it out were congruent with the action stage of the model. Once the regimen became routine, sticking to it became the focus, similar to the maintenance stage. The maintenance stage was sustained by the final theme of realizing benefits. While we identified common themes, each participant’s experiences were unique suggesting that any general intervention to enhance medication adherence will need to be individualized to each intervention recipient. Implications: Further research is needed to identify the strategies of PLWHA who are successfully adhering to their medication regimens. Because of the uniqueness of each individual’s life challenges, interventions developed from such research should be developed in collaboration with PLWHA. Participation of PLWHA in intervention development and implementation should yield improved outcomes for PLWHA.
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