Patients’ Characterization of Medication, Emotions, and Incongruent Perceptions around Adherence
Abstract
:1. Introduction
2. Methods
2.1. Recruitment
2.2. Measure
2.3. Procedure
2.4. Data Analysis
3. Results
3.1. Ambivalent Feelings toward Medication
“I drink gallons of water a day because I’ve got to flush that out of my system, that stuff is toxic. … my organs are probably just screaming on the inside.”(FG 1, SRA 5)
“I’m a little concerned because the medication which seems to be working well, you know, can kind of damage your liver or kidneys.”(FG 1, SRA 5)
“I hate prednisone. It’s like the most evil but it helps.”(FG 4, SRA 4)
“[My medication] feels like the annoying person in junior high that’s always there … [I’m] like ‘can you leave me alone?’ … I know my medication is helping me; it’s good to have that friend.”(FG 4, SRA 5)
“I guess you’d say [the medicine is my] best friend … I can’t say it makes you feel perfect, but I think without it I would feel much worse.”(FG 1, SRA 5)
“It’s a Viking. So, it’s strong and fights for me and defends me. But if I’m on the bad side of my Viking, it might hurt me.”(FG 2, SRA 5)
“I have a ‘date’ with (drug name) once a week. Nobody likes needles but I do love the (drug name) needle because … I promise you by, like the second day, you can feel it; I can breathe and move. It’s $3500 [for a three-month supply]—it’s like the most expensive thing in my home. But I will sell things so I can get it … [However], every time I take this needle out I’m like, oh my God, don’t let five years from now I grow an extra ear or anything.”(FG 1, SRA 5)
3.2. Struggles in Taking Medication
“I really hated it because it meant that I was sick, and I was the only one that had to take medicine in my family. Even my grandmother is healthier than me.”(IDI 2, SRA 4)
“I’m embarrassed when I go places, or even when our kids would have friends over … I feel like a druggie taking all this medicine when I’m 40 years old.”(FG 4, SRA 5)
“I was able to write and function and forget about my arthritis.”(IDI 7, SRA 5)
“It’s like an internal battle with myself, and I go back and forth for a couple of days before I just break down and say it’s easier just to take it.”(IDI 3, SRA 5)
“I know it’s like that evil thing … You know you would be better if you could get off of it, but I cannot get off of it.”(FG 4, SRA 5)
3.3. Actions and Attitudes around Non/Adherence
3.3.1. In/Congruence between Perceptions and Behavior
“I take them exactly as prescribed. It’s strong medication, and if you start self-regulating, I just can’t imagine the side effects … that really scares me.”(FG 2, SRA 4)
“It upset my stomach, so I started taking less and less, and trying to find that edge where it was healthy, but I wasn’t getting sick.”(FG 3, SRA 5)
“Sometimes on a bad day, I will get frustrated because I feel like my medication is not working anyways, so then I don’t want the side effects as well if I take it. So, perhaps on bad days, I’m less compliant.”(IDI 6, SRA 3)
“[My doctors] would prescribe that, but I would take half of that when I feel like I need it or more if I felt like I needed it.”(FG 1, SRA 5)
“I just took one extra one, and it worked, so I guess I need to talk to the doctor about me having to take a little bit more than just that one pill when I am having an episode.”(FG 2, SRA 4)
3.3.2. Emotions and Empowerment from Self-Adjusting Medication
“I would say uneasy … because if I skip a dosage, or if I’m kind of playing around with it, I’m not sure what the outcome is going to be. So, it’s like a risk I’m taking.”(FG 3, SRA 4)
“[I feel] like I’m a disappointment sometimes to [my care team].”(FG 4, SRA 4)
“I’ll get paranoid that my joints are secretly, you know quietly getting damaged and that I’m not helping them.”(FG 4, SRA 5)
“I would say [I feel] empowered to be able to decide if I was able to take it or not whereas before I felt reliant.”(IDI 2, SRA 4)
“Empowered. I mean, it’s in my hands … I feel like I’m taking charge of my own health.”(FG 1, SRA 5)
“In control. It makes you feel like you’re doing a little bit of something on your own and not being told exactly, ‘You got to do this’.”(FG 4, SRA 5)
“I make decisions based on my side-effects. If they are intolerable, I figure [my doctor] is not in my body, he doesn’t know.”(FG 4, SRA 4)
“The doctor put us on a dosage, but because we know our own bodies, we know that we may feel better. So maybe we don’t need as much medication as they actually prescribed.”(FG 1, SRA 5)
“I know my body, and I know by experience … At the beginning I wouldn’t do it [self-adjust my medication) and I followed the instructions of the doctor and [it] got me really in a bad spot … But then [I felt] in control because now I learned how to manage my own body, right.”(FG 2, SRA 5)
“I think empowered and in control definitely applied later when [my doctor] started communicating with me and asking me what I wanted to do.”(IDI 1, SRA 4)
“I feel in control because if [there is] something that’s not right [when I take my medication differently] I know I can always pick up the phone and call the nurse and they’ll send a message to my PA nurse, and they’ll call me back. So, I can kind of govern my own self.”(FG 2, SRA 5)
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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n = 27 | n (%) | Mean (SD) |
---|---|---|
Gender | ||
Woman | 21 (77.8%) | |
Man | 6 (22.2%) | |
Age (years) | 46.4 (14.56) | |
18–29 | 4 (14.8%) | |
30–49 | 13 (48.1%) | |
50–64 | 7 (25.9%) | |
65+ | 3 (11.1%) | |
Ethnicity | ||
Caucasian | 20 (74.0%) | |
African American | 3 (11.1%) | |
Hispanic | 4 (14.8%) | |
First diagnosed (years ago) | 11.0 (8.1) | |
1–4 | 4 (14.8%) | |
5–9 | 8 (29.6%) | |
10–14 | 8 (29.6%) | |
15–19 | 5 (18.5%) | |
20–24 | 1 (3.7%) | |
25+ | 1 (3.7%) | |
Self-reported adherence | 4.5 (0.7) | |
1 = never | 0 | |
2 = not often | 0 | |
3 = sometimes | 3 (11.1%) | |
4 = most of the time | 8 (29.6%) | |
5 = always | 16 (59.3%) |
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Tu, P.; Smith, D.; Clark, R.; Bayzle, L.; Tu, R.; Lin, C. Patients’ Characterization of Medication, Emotions, and Incongruent Perceptions around Adherence. J. Pers. Med. 2021, 11, 975. https://doi.org/10.3390/jpm11100975
Tu P, Smith D, Clark R, Bayzle L, Tu R, Lin C. Patients’ Characterization of Medication, Emotions, and Incongruent Perceptions around Adherence. Journal of Personalized Medicine. 2021; 11(10):975. https://doi.org/10.3390/jpm11100975
Chicago/Turabian StyleTu, Pikuei, Danielle Smith, Rachel Clark, Laura Bayzle, Rungting Tu, and Cheryl Lin. 2021. "Patients’ Characterization of Medication, Emotions, and Incongruent Perceptions around Adherence" Journal of Personalized Medicine 11, no. 10: 975. https://doi.org/10.3390/jpm11100975
APA StyleTu, P., Smith, D., Clark, R., Bayzle, L., Tu, R., & Lin, C. (2021). Patients’ Characterization of Medication, Emotions, and Incongruent Perceptions around Adherence. Journal of Personalized Medicine, 11(10), 975. https://doi.org/10.3390/jpm11100975