Table 3.

Challenges to Medication Adherence by Stakeholder Group

Challenges Expressed by AYAs
Themes	Illustrative quotes
Difficulty remembering to take medications on time	“It’s easier in the school year because you are getting up early… but during the summer, it’s kind of more relaxed…and it can be a little bit more difficult.” −22 year old “I have to take my medications four times a day. When I am on my own I have a hard time remembering, so my mom reminds me to do it.” −14 year old Once the doses go down it does not really seem to change a whole lot (unless the manufacturer changes the pill color or the pill size or shape) but it does not really affect me because I know what pills are routine and plus I am on like the Prograf and Cellcept – 22 year old “If I don’t get up and take them right away, then I’ll say to myself that I will remember to take them when I get up, but then I forget and I do other things.” −15 year old -I know which ones they always look like and it’s not hard for me to figure out which I am taking and it’s just become normal – 22 year old “I think as you get older, you kind of get more busy with different school things so I think it can be a problem to take them at night.”. −24 year old
Learning the steps required for medication management	“To begin with, [my coordinator] helped me learn my pills by color, by name, by dose and when they are due. I can tell I’m getting better at remembering these details which makes me feel good.” −12 year old “I’m going to want my parents there to help with everything because I have problems that prevent me… I have issues remembering or just saying stuff normally….I have a hard time being social because I have anxiety and stuff like autism… and stuff that makes it hard for me to be able to do it on my own now.” −22 year old “Obviously, I know my dad is not going to let me forget to take my meds, so sometimes I just wait for him to remind me.” −17 year old “You have to decide to either take your meds or you don’t … you need to know it’s your responsibility for life.” −24 year old
Challenges Expressed by Parents
Themes	Illustrative quotes
Fear of the consequences of non-adherence	“…they’ve been given a gift ….if that means I’m getting up at 6:30 on Saturday when I would love to sleep in, I’m going to do it.” -mother of 12 year old “[My son] never goes on trips without me except for [kidney camp]…they really were taking care of him so I allowed that, but he doesn’t go on any other trips with anybody else. -mother of 13 year old “The possibility of rejection is real…. because everything changes if she doesn’t take those meds” -mother of 15 year old
Knowing whether their children took their medications	“It’s just the extra reassurance that if I don’t receive a text then I know she didn’t even think about it so I can get on her and get her to take them.” -mother of 15 year old “You think it will be fine but then when you say to them, ‘did you take them’ – ‘yes, I took them” and you come into the room and they are still there, so… I kind of put it in his mouth almost.”-mother of 13 year old “For me, it’s more if he is somewhere else and I’m not with him…how do I know that he actually took his medication? To me it’s not so much his scheduling, its whether he took them or not.” -mother of 15 year old
Supporting children’s transition toward independence	“… there’s a lot that we’ve had to go through to get our kids to this point and none of us are willing to sacrifice their health… and we are sacrificing ourselves… until they honestly can show us that they can do it for themselves consistently.” -mother of 17 year old “Of course, there is always that resistance, especially with a teen. We’ve had alarm watches, alarms on the phone…sometimes because he has the ear plugs in or he’s online he doesn’t hear them.” -father of 16 year old “It’s like there’s so much outside of their control, but you know that’s the one thing they can control. They say, ‘I’m not going to do it’.” -mother of 17 year old
Challenges Expressed by Health Care Professionals
Themes	Illustrative quotes
Lack of reliable measures of medication adherence	“….some sort of tools need to be developed to help determine non-adherence early to prevent bad outcomes.” -physician’s assistant adult transplant “Because there is no way to know for sure whether medications are being taken as they should be, I had to assume that no adolescents were achieving adherence….” –pediatric transplant psychologist “Patients won’t tell clinicians the truth about med-taking to avoid disappointing them. Teens tell us what they think we want to hear….” -pediatric transplant nephrologist
Limited capacity to support adherence	“We have limited time to spend on adherence during a follow-up visit and geographic distance from the center makes it difficult for families to plan additional visits.” -transplant psychologist “Ideally, the entire team would be mobilized to help solve adherence problems… Adherence is only one of many issues addressed in team meetings. Finding the time for the team to develop individualized solutions regarding adherence is difficult.” -pediatric transplant nephrologist “We all feel the need for training about how to assess educational needs and how to deliver material appropriately to kids and parents with variable needs.” -pediatric transplant coordinator
Maintaining a trusting relationship with children and parents	“Sometimes it’s behaviors of the parents that undermine adherence…For instance, lack of financial responsibility, or making sure that kids get their prescriptions refilled, or come to clinic appointments. It is difficult to make understand that it is not ‘us against them’. …we work with them for the good of their child and their family.” -transplant social worker “Some parents consider non-adherence as a reflection on them so they make kids afraid to report non-adherence; this is another example where the trusting relationship is threatened when parents prevent kids from openly discussing their struggles with adherence.” –transplant coordinator “Considering the role parents play in promoting adherence, it is important to recognize that they [parents] run the spectrum of independence levels, education, cognitive ability, degree of involvement, capacity, social support and resources. They need to be able to trust that we are willing to help meet their needs.” –transplant social worker
Supporting children and parents toward transition to independence	” After the first year, adolescents become less vigilant and early habits are broken. The adolescents tend to become less vigilant about taking medications during periods of relative stability. This is an important factor for determining readiness for greater independence.” -pediatric transplant nephrologist “Older teenagers often struggle the most because their lives become more complicated. Teens tend to believe they are invincible so they take risks… and gamble with their health. These behaviors are often most pronounced in the late teenage years when they should be transitioning to more independence.” -transplant psychologist “It seems like there is sometimes a disconnect between the parents thinking the kid is ready to become more independent and the kid not wanting to disclose that they are forgetting to take their medications. Or sometimes, the adolescent is ready to take responsibility and the parent is unwilling to let go.” -transplant coordinator