Introduction 1 1 3 4 5 6 7 8 9 10 10 11 8 12 13 Methods 1 Table 1 Studies’ methods and participant attributes Study Medication experience Pharmaceutical care practice Illness experience of medically uninsured Methodology Phenomenology Ethnography Interpretive phenomenology Methods Interviews Interviews, focus groups, participant observation Interviews Setting of interviews University conference rooms and offices Participants’ homes and clinic exam rooms Participants’ homes, public library rooms, & university rooms Participants Staff and faculty at public university Patients of pharmaceutical care (PC) Medically uninsured individuals Selection criteria 6+ months taking a chronic medication (actual 3–15 years) 2+ years experience with PC 1+ year uninsured, 2+ medical conditions, prescribed meds Number of participants 5 25 11 Age range 24–60 36–74 27–64 Gender of participants 4 women, 1 man 17 women, 8 men 8 women, 3 men Average number of medical conditions per participant 2.8 4 4.5 14 3 15 16 14 17 Results The meaning of medications for participants was revealed as the following themes: a meaningful encounter, bodily effects, unremitting nature, and exerting control. A meaningful encounter The medication experience is first revealed as an encounter with a medication. It is an encounter that is embedded with meaning long before it occurs. The meaningful encounter can be revealed as a sense of losing control, a sign of getting older, cause questioning, and a meeting with stigma. Each of these sub-themes of the meaningful encounter is described below. I used to think I was immune to disease. This body is so tremendous that it will never let me down, but here I was—I had to start taking medication. I lost control of my health. I wish I could handle it myself. I felt like if I took lorazepam that I’m failing. If I could fight it myself, get over it myself without the drug then I’m getting better. 18 I feel like a 90-year-old woman. Like my grandpa, he’s on all these pills. If you’re an old person that’s okay, but if you’re young it’s really odd. that I’m not sure what I’ll get from these medications. I thought about what would happen to me if I just decided not to take it. Questioning the need for a medication when it is first prescribed can be interpreted as resistance by health care professionals, whereas for participants it is a way to reclaim a degree of control. Participants sensed that their individual autonomy was undermined when taking chronic medications until the point they questioned the taken-for-granted notion that medications are the right option. Maybe I’m just embarrassed, even if nobody would know. I think people would see me as weak. When initiating a chronic medication, participants encountered different meanings that shaped their initial experience of the medication. Participants experienced the meaningful encounter with a chronic medication as a sense of losing control, a sign of getting older, causing them to question, and a meeting with stigma. Bodily effects Medications have expected pharmacological benefits as well as anticipated side effects and unanticipated adverse events, all of which are bodily experiences. When a patient’s experience of their body in illness is debilitating, a medication can provide relief and allow the patient to regain their “healthy” body. However, medications also can cause negative bodily sequelae that are part of a patient’s medication experience. The bodily effects of medications theme was revealed as the experience of a magic elixir and trade-offs. At first I was very grateful that insulin existed—it saved my life. I am grateful that I’m alive. It is scary that you’re reliant on this magic elixir to be alive. I’ve struggled with depression all my life. My psychiatrist started me on antidepressants. I’m very grateful for these drugs. I wouldn’t be able to work if it wasn’t for them. 13 You learn to decide if you’re gonna take the side effect over how well it helps with your depression. Citalopram worked so well for me that I didn’t care that I was peeing my pants. I’m not worried about taking them, mostly because if they’re going to kill me earlier I don’t care because I just want the problem to go away. 10 Even though I was hesitant at the beginning, after seeing the benefits and realizing how life can be with “just a medication” and feel good… This theme illustrates how patients may rationally approach the decision to take or continue a medication and that they are willing to take a medication once they believe that the medication’s benefits outweigh its risks. Unremitting nature The first time somebody told me I would have to take that for the rest of my life I got mad. I feel that part of my life now is going to be me taking more and more medicine and relying on medications to continue living. I think, what if I went a couple months without taking anything? But I don’t feel I have that choice. Those pills keep you prisoner. If you go on a trip, that’s one of the major factors - it’s more important than packing enough underclothes. It’s this constant thing you wish you could have a break from, but you can’t. You feel sorry for yourself because you’re still on these pills. I don’t want to think - it’s been this long and I’m still on them. Exerting control I don’t think people understand how much you have to think about it. I call it thinking like a pancreas. You have to do all the work. You have to determine how much you take [insulin] and that changes from day to day and from hour to hour... I know how to go off of it, decrease it very slowly or you get sick. As the doctor upped the dose I felt like I was high … I started getting a really weird feeling in my head, I even had pains in my chest. I thought to myself, I’m just gonna quit taking this. So I quit, and then as the week went on I was slowly getting better. I like being able to adjust my sertraline as I find necessary. I like to have that control. 10 2 Discussion The authors define the medication experience as an individual’s subjective experience of taking a medication in his daily life. It begins as an encounter with a chronic medication. It is an encounter that is given meaning before it happens and is often a reaction to the symbol that medication holds. The experience may include positive or negative bodily effects. The unremitting nature of a chronic medication often causes an individual to question the need for the medication. Subsequently, the individual may exert control by altering the way he takes the medication and often in part because of the gained expertise with the medication in his own body. 7 1 n Conclusions The medication experience is a practice concept that serves to understand patients’ experiences and to understand an individual patient’s medication experience in order to meet his or her medication-related needs. The understanding of the medication experience presented in this paper can serve as a guide for health care practitioners who are interested in meeting a patient’s medication-related needs and provide a foundation from which to interpret each individual’s unique medication experience. Additional research is needed to further understand the medication experience and examine how it can be used to optimize patients’ medication-taking behaviors as well as if there are stages of the medication experience that patients pass through.