Adolescents were 11 males and five females with a mean age of 15.75 years (SD = 1.08 years) and parents were 12 mothers with a mean age of 46.44 years (SD = 5.32) and four fathers with a mean age of 48.81 years (SD = 7.49). The sample consisted of 94% Caucasians, and 6% African Americans. The modal annual household income category was $75,001–$100,000. summarizes additional family demographic data. Mean disease severity was in the mild to inactive range for the PCDAI (10.67) and LCAI (7.00). During interviews, both patients and parents spoke candidly about their experience with IBD and their perceptions of issues that impact treatment adherence. Participants did not decline to answer any of the questions and openly discussed positive and negative issues. Multiple factors emerged that impede or facilitate treatment adherence.
Demographic characteristics for sample.
Factors that Impede Treatment Adherence
Several issues across behavioural, educational, organizational, and health belief domains were perceived as significant challenges to adherence by patients and their parents. Participants reported that forgetting to take medications was a behavioural/cognitive factor that presented significant challenges to disease management. This theme was evident in both patient and parent accounts of their adherence to IBD treatments. Moreover, forgetting appears to occur in multiple contexts, including home, school, and activities such as sleepovers, and the issues that might lead to forgetting are complex.
PARENT (Mother of 16 y/o male): There are times when… every other weekend he visits his father for the weekend. And normally I’ll make sure he packs his pills. You know, I remind him. And I wasn’t there to do that (one time), and he forgot them. So he had missed a day of pills… I think that’s the difficult part. He’s at an age now where he has an active social life. And… it’s just a constant – there it is and you have to take it no matter what. It’s part of his life and at the same time, he’s trying to balance that with being sixteen.
ADOLESCENT (14 y/o male): Um, forgetfulness and maybe just sleepovers and… hanging out with friends. Sometimes you just kinda forget or you just don’t have a chance to because you don’t have your medication with you and you just have a change of plans.
Given that the majority of paediatric IBD patients are in the developmental stage of adolescence, it is notable that activities were also a theme related to difficulties with adherence. Adolescents are often involved in a number of extracurricular activities, and adherence to multi-dose regimens might be difficult if priority by the teen is given to other activities.
PARENT (Mother of 14 y/o boy): I would just say that you have the schedules of three children plus two adults and family activities and school activities and sport activities, you’re just always on the run. And running in and out. Just multi-tasking… and at this point, I’m hoping that he will step up and realize that he’s gotta start taking medication.
ADOLESCENT (16 y/o female): Definitely… during the summer, I don’t take them as much as I should. I guess I don’t have… a set schedule and I travel a lot, so when I have to… pack them with me on vacation, I usually wind up missing… a day or something.
ADOLESCENT (16 y/o male): I don’t think it’s important enough to stop what I’m doing and go take the pills, especially if I’m going to work or going to school or something. I don’t want to be late because of the pills.
Parents and adolescents occasionally experience conflict over adherence. Participants reported that this conflict occurred commonly between mothers and their children, which is understandable as mothers often take primary responsibility for monitoring their children’s treatment. In addition, adolescent oppositional behaviour appears to impact patient adherence.
PARENT (Mother of 17 y/o female): But… it’s not something to be taken lightly, I don’t think. You’re on them for a reason. And that’s how I feel… he wouldn’t have you on all this stuff just for fun and games, and (the pharmacy) is getting rich from us buying medicine all the time.
PARENT (Mother of 17 y/o female): She’s already up in bed, and I say, “Did you take your medicine?”, and she’s like “sigh…No”, like it’s annoying that she now has to get out of bed, go downstairs… and I’m not bringing them, but sometimes when she’s sick, I’ll bring her morning’s up to her, cause she’ll stay in bed until… noon. I don’t want her to miss them.
An additional theme was adolescents’ social comparisons with peers and consequent embarrassment about taking medications resulting in nonadherence.
PARENT (Mother of 14 y/o male): Or sometimes I just think it’s one of those things where his friends aren’t on medication. And I’ll have to bring it to a sleep-over, and it’s embarrassing sometimes.
Another recurrent theme in the data was concerns about regimen complexity. Patients and parents reported that the number of medications, number of pills per dose, and/or timing of doses presented difficulties in adhering to treatment regimens. Of considerable concern is that the complexity of regimens appeared to result in arbitrary changes in regimens by parents and patients that were not suggested by the health care team.
PARENT (Mother of 14 y/o male): …like the calcium is just a supplement that we’re giving him and… he can have it three times a day to get the maximum amount and not too long ago, I just took away the morning one… that was just… kinda stressing him out in the morning…that’s a pretty big pill and so I said to him, let’s just back off on that one and took it to the important ones…and at one point, I was giving him the multivitamin and the zinc in the morning, and I just moved those to a later time. So it’s just not so overwhelming in the morning.
ADOLESCENT (16 y/o female): … at first it was difficult ‘cause I had to take… over twenty pills a day, and I just didn’t want to. So, I skipped it a lot. And, at first, I couldn’t swallow pills.
Patients and parents demonstrated general knowledge about IBD and treatment approaches. Further, although patients and parents demonstrated specific knowledge of their treatment regimen, there was a very limited understanding of the function of specific medications (i.e., how the medication works and what symptoms it treats). Moreover, patients’ descriptions of the function of medications were notably less explicit than their parents’ descriptions, with responses such as “I don’t know (how the medication works)”.
PARENT (Mother of 16 y/o male): Um, I just know the 6-MP lowers your immune system, so it also makes it easier for him to catch colds…. But, I know that without it, it seems that he has more flare-ups. I don’t know if his intestines actually work against themselves, or how it works exactly.
Organizational issues did not appear to play a significant role in treatment adherence. One exception to this is that patient-parent dyads reported that missed doses of medication in the past were often due to a lack of planning ahead for treatments when other activities might interfere with taking medications. Perceived barriers to adherence, in the health belief domain, were a common issue that impacted adherence. Patients and parents identified 17 barriers to adherence, including financial barriers, work/school barriers, and several other barriers such as difficulty swallowing pills were viewed by patients and parents as negatively impacting adherence. Pill swallowing difficulties were surprising given that these patients were all adolescents and would likely have had experience swallowing pills, thus desensitizing them to any fears that might present difficulties with treatment adherence.
Factors that Facilitate Treatment Adherence
Patients and parents reported several behavioural factors as facilitators of treatment adherence. Of these, family support and good parent-child relationships were highly valued.
ADOLESCENT (17 y/o female): I know I can go to them about anything and they’re always there for me. And… they’re really understanding about the whole IBD thing. And… they’re really nurturing….
PARENT (Mother of 17 y/o male): Well, I think… he just knows he has our support and we all… the whole family is invested…in keeping him feeling well. You know, we all went through a tough time when he was first diagnosed. And it was very scary, and I think we all as a family want to avoid that at all… cost.
Several other behavioural factors facilitated adherence. Participants indicated that establishing a routine was integral to remembering to take medications. Parental monitoring of their child’s adherence also facilitated adherence. Importantly, there was variability with respect to how monitoring occurred (e.g., checking in at the end of the day, watching the child take medications), and at what age parental monitoring should increase or decrease. Generally, parents felt it was important to monitor their child’s adherence, but expressed uncertainty about the best approach. Similarly, adolescents reported that reminders by parents, siblings, or self facilitated adherence. Despite the positive influence this was perceived to have by families, it also was often interpreted by adolescents as their parents nagging them to take their medicine.
As previously noted, participants indicated that conflicts about nonadherence between parents and adolescents occasionally occurred. They indicated that conflict that was resolved by discussion as opposed to fighting enhanced adherence.
PARENT (Mother of 15 y/o male): Yes, we would talk about it. Ask why he just doesn’t want to take it… find out if it’s making him sick or it’s… causing him pain. … and then we’ll talk to the doctor about it, but … at one point he was saying that one of his medications was making him nauseous, but he wasn’t telling me that he was nauseous so he just stopped taking the medication. And we had a long discussion about that.
ADOLESCENT (14 y/o male): I’ll get the “You need to do this cause it’s gonna keep you healthy”. I’m not going to get into trouble for it because it doesn’t happen that often. But I’d probably get into trouble if I was constantly… hiding that I wasn’t taking my medication.
Participants were fairly knowledgeable about the aetiology of IBD and general treatment approaches. Organizational attributes that served as facilitators of treatment adherence included keeping medications accessible to adolescents and having a specific place within the home that medications were kept at all times. Additionally, patients and parents reported use of a pill box as an organizational tool either currently or in the past, and that it was helpful for them to have multiple medications organized by dose and by day. They also reported that planning for medication doses around other activities was helpful.
Patients and parents discussed their beliefs and experience regarding how well medication works to treat their symptoms and the issues related to delayed relief of symptoms with some medications. Generally, participants’ views of medication management for their symptoms were positive and patients’ and parents’ perceived benefit of taking medications emerged as a significant health belief theme related to adherence.
ADOLESCENT (15 y/o male): Well, it’s easy because I know that it’s going to be beneficial when I do take it. So, why (would someone) not take it and feel pain? If you take it, you’ll be relieved. It’s not really difficult.
PARENT (Mother of 17 y/o male): His… school attendance has been outstanding. Pretty much the only days he misses school are when he has to come here. Maybe, a day here or there, but nothing like it was… in those months leading up to the diagnosis.
ADOLESCENT (14 y/o male): It’s important to stay healthy…for me, cause I play a lot of sports. You don’t wanna miss practices… especially ‘cause I’m going into high school, I don’t want to fall behind in schoolwork. So it’s important to make sure that you’re… not missing school cause of stomach problems or something like that.
Related to this was a theme concerning physiological ramifications of not taking medications. Adolescents reported concern that if they missed doses, they would experience an increase in IBD symptoms.
ADOLESCENT (17 y/o male): …you feel miserable if you don’t have it. So that’s pretty much my motivation to take it.
Additional Factors Related to Adherence
Two additional factors emerged from the data that did not appear to act exclusively as an impediment or facilitator of adherence. The first theme concerned the immediacy of medication effects or the association made between taking medication and how quickly symptom relief was achieved. This is a temporal distinction from the aforementioned theme regarding perceived benefit of taking medication in that while patients and parents believed that taking medication over time improved their health and functioning, they did not necessarily see an immediate positive effect from taking medication. A particularly interesting aspect of this theme was that adolescents’ rationale for taking medication was bidirectional. That is, the perceived effect medication had on patients resulted in decisions to adhere or not adhere to the treatment regimen.
ADOLESCENT (17 y/o female): … it’s hard I think with this stuff ‘cause, if I don’t take it, I don’t see an immediate… effect from not taking it…. Like, it doesn’t feel like it’s a problem missing it.
ADOLESCENT (16 y/o female): … usually I feel fine. … I guess I think I don’t need to take my medicine because… I’ve felt fine for over a year. So, if I miss a few days, it won’t hurt me at all, but I guess in the long run it could cause a flare-up. So, I should probably stick to them.
PARENT (Mother of 16 y/o male): I think when he’s not feeling well, it’s a lot easier for him to remember to take it. But when he’s feeling well, then I think it sometimes slips his mind.
The other additional theme was allocation of responsibility for treatment adherence. Both parents and adolescents made comments regarding assumption of responsibility for taking medication, and parents often expressed confusion or uncertainty about whether they were handling the transition of responsibility from parent to adolescent appropriately.
PARENT (Mother of 16 y/o male): We really are working on trying to make him responsible for himself ‘cause we know he’s going off to college. And… I want him to already have been responsible for it. … but of course now that I realize how severe it is, I think we’re probably going to try to make a little bit …adjustment in our schedule, but…I’m not going to punish him. I’m not gonna make him feel bad about it. That just doesn’t seem like that would be productive.
PARENT (Mother of 17 y/o female): I mean… we’re looking at colleges and… I’m not going to sign up if she’s not going to be compliant. I can’t be checking her pill box every day to make sure she’s taking her meds, so… she’s gonna have to show me…It’s something that she needs to get more responsibility for.. So, either she stays home and goes to school and proves to me that she’s gonna be compliant…