Adherence Challenges: Strategies for Providers

by Kristie Puster, PhD

adheranceBetween 10 percent and 15 percent of children are diagnosed with a chronic medical illness, and approximately 20% have a diagnosable mental illness. These illnesses typically require medical or behavioral intervention. Children and families manage medical and psychological regimens in order to improve their health and functioning. Providers prescribe medication, behavioral changes, and other recommendations that all depend on patients’ implementation outside the office. Thus, adherence is vital for all providers. Ellie is an actual case example (with a few modifications to protect her real identity).

Ellie is a 15-year-old female who was diagnosed with Type 1 diabetes a year ago. While in the hospital, she received education and practiced her medical regimen, which included self-administering her medication by injection — something she was phobic about at first. Instead of being proud of this accomplishment, however, she stated “I don’t want to talk about it” any time someone praised her efforts.

Upon her return to school after discharge, she demonstrated a high degree of anxiety. She had always been a very conscientious student, and she and her family placed a premium on working hard and being “strong” in dealing with challenges. She worried about her make-up work and her teachers’ perceptions about her absence. Specifically, she worried they would think she was “trying to get away with not doing my work” or think she was not capable of managing her illness and school.

Her friends were supportive welcoming her back to school and helping her catch up with work, but Ellie would not share the details of her diagnosis with them. She told two of them she had diabetes, but she usually just said she had been sick and had to go to the hospital. To prevent anyone from finding out, she retreated to a stall in the bathroom to do all of her glucose testing, insulin administration, and any necessary calculations of carbohydrates.

After a few months, her doctor noted that her HbA1c was higher, indicating poorer control. Her parents had left her medical regimen up to her but began to ask her questions. She admitted she was so worried about what others might think about her illness that she sometimes did not adhere to her regimen. She was anxious that peers would think she was weak, that they would worry about catching her illness, that they would be “freaked out” by blood or needles, and that they would stop being friends with her.

She perceived her illness as making her weird and unable to fully connect with others her age because “I’m just not like them anymore.” She reported anger at her illness for making her “not strong and not who I really am.” She gave examples of being unable to be herself around peers, being deceptive with her parents about her self-care and struggles with her adjustment, and believing she could no longer be a good student. She also stated that she hated going to see her doctor because “I have to wait forever and then they just say what I already know. I don’t even see the same doctor every time I go. What’s the point if I know what I’m supposed to be doing?”

Overall, we know pediatric patients have a wide range of adherence rates, ranging from 11 percent to 93 percent. This variance reflects the numerous factors that can influence adherence (Burkhart & Dunbar-Jacob, 2002). Generally, adherence declines over time with both acute and chronic conditions. Health behaviors and health status are often interrelated and mutually influence each other. Providers often provide excellent education and modeling for medical regimens, and still encounter poor adherence rates. So, how do we assist children and their families to maximize their adherence and, by extension, improve their health and functioning? Below are practical strategies for intervention, using Ellie’s case example.

Provider Interventions

A variety of adherence variables concern the provider. Patients who feel more connected to their provider, or simply “like” their provider are more likely to be adherent. Providers who use effective and respectful communication for instructions are also likely to have patients with better adherence, and providing written copies of all explanations and instructions shows a high level of benefit. On a very practical note, the convenience of appointments affects adherence. Having shorter wait times for appointments, being in a location with parking accessible to patients, and having transportation to and from appointments affects not only adherence to appointments, but also to recommendations and regimens provided in those appointments.

Ellie voiced distress about her interactions with providers, going so far as to verbalize a sense of futility in her interactions with them. Her discomfort with multiple and unpredictable providers as well as sitting in the waiting area for what felt like a long time had her checked out of the process before it began. After exploring this, her mother placed a phone call requesting the provider that Ellie felt most comfortable with each time. Fortunately, this request was honored. More tricky was the wait-time issue. The physician’s office struggled to see patients in a timely manner so the family decided to book the first appointment of the day whenever they could. This noticeably reduced their wait time, and between this and changing her provider, Ellie reported her doctor visits improved.

Monitoring (with Incentives)

Another intervention is to increase cuing and monitoring of adherence behaviors. Increasing the frequency of provider appointments or lab testing, using self-monitoring checklists, using visual or other sensory cues, or using technology to issue reminders or track behaviors are all readily available strategies to increase adherence. More specifically, cell phones and computers are now able to utilize apps, alarms, and messaging to assist with monitoring. Adolescents in particular are often more receptive to monitoring in this format.

Monitoring can also be paired with incentives for completion of said monitoring or for engagement in the necessary protocol. Incentives can include things like time spent on electronics, a desired item, planning a family event, or other privileges. A classic sticker chart or other token economy system can work quite well.

In Ellie’s case, her parents began requiring her to share her blood glucose and insulin numbers each evening before dinner. This was framed to her by letting her know her health and safety were more important than anything else. To assist her in this monitoring, they utilized an app on her phone for assistance with reminders and tracking. If she had completed all of her required testing and insulin for that day, she was allowed to have her phone and computer to use for socializing that evening. If she had not been adherent to her plan, these items were off-limits until the next day. This intervention also increased communication between her and her parents, which will be discussed in the next section.

Family

Family interventions repeatedly show efficacy in improving adherence. Improved communication and disclosure about illness issues, along with family-based problem solving, yield improvements in health (Osborn et al., 2013). There are multiple ways of implementing this with families.

First, providers can facilitate parental support and understanding for the challenges of self-care including the emotional reactions the medical regimen elicits. Children and teens increase their ability to manage their regimens by simply feeling that others recognize the stressful aspects of them. Discussion about the impact of the illness on the family also leads to improved adherence, often by way of improved problem solving.

Providers also can empower parents to maintain their parental roles, specifically setting limits and having healthy boundaries. Parents of chronically ill children often relinquish some of their authority in an attempt to decrease stress or increase a sense of control in their children. Paradoxically, this typically does the opposite. In fact, children with medical regimens benefit from support, monitoring, and limits, especially around challenging health issues.

At times, lack of adherence may be indicative of underlying family issues. By maintaining illness or need for support, a child may be increasing or maintaining a sense of closeness or involvement of parents in his life. He may fear restoration of health, as it will lead to additional responsibilities such as increased academic requirements and loss of special treatment, or he may feel unable to socially function without supports. In addition, the fact that lack of adherence brings patients into the provider’s office offers opportunities for other issues of the family to come to light. Concurrently exploring family secrets or issues that undermine family functioning sheds light on why adherence may be suffering or why other symptoms may be present.

Ellie’s family worked hard to establish more understanding of her perspectives and anxieties about her illness. They discussed how the illness had changed their interactions. They validated her struggles, while re-establishing limits and boundaries for her. They re-instituted a curfew, family meals, and guidelines around electronics usage. They were open to discussions about the family need for “being strong” and how this affected each of them. Ellie reported that knowing her family members understood her more fully and were willing to tackle her illness together improved her sense of control over her illness and renewed her sense of self.

School Interventions

Another area to address in order to maximize adherence is a family-school partnership. Many pieces of a child’s regimen either take place in school or require adults at school to be knowledgeable of both the condition and treatment. At times, a child is wonderfully adherent everywhere except school.

It is extremely important to create a formalized plan for administration of and communication about the medical regimen. This includes not only administration of medication, but also communication strategies for times when things do not go well, backup providers at the school if someone is absent, ways for both the school and parents to communicate concerns, and permission for communication directly between medical providers and school contacts.

Discussion of ways to maximize comfort with adherence within the school setting is also crucial. Questions of with whom, when, where, and how to complete medical regimen needs are vitally important. Would the teen feel more comfortable if friends were with her or not? Can the time of administration be flexible? How does he feel about the person who usually provides his medicine to him? The answers to these and other questions are important in school planning and developing an understanding of the best ways to intervene to address anxiety or distortions within or about the school setting.

School budget and liability constraints can affect school planning as well. Many schools only have a part-time nurse. There may be specific prohibitions against a teen carrying her own medicines so that she must go to the office every day to receive them. To assist families in negotiating these challenges, providers can create a plan within these confines, helping the family to accept what they cannot change.

Ellie and her family enlisted the help of the school nurse in enforcing more appropriate administration of her medication, specifically prohibiting her from using bathroom stalls. In combination with increased involvement of her friends, her anxiety about being different from peers and being able to check her blood sugar and administer insulin significantly decreased.

Peers

An often-overlooked strategy for assisting with adherence is using the power of peers to change behaviors. Especially for teens, but for younger children and entire families as well, addressing the spheres outside of the individual and family units can be extremely beneficial. Structured support groups for their challenges or specific illness can provide a wealth of ideas, positive pressure toward healthy behaviors, and validation and normalization of feelings and concerns — all of which have been shown to increase adherence.

In addition to more formalized peer supports, a provider may choose to intervene directly with the people involved in the child and family’s life. With permission from the patient, bringing friends or friends’ parents into treatment can be a very powerful experience. These individuals bring new information about what is challenging in particular settings, new ideas about how to navigate tricky settings or peer situations, and show understanding and support that the patient often does not expect. Once friends are educated about the patient’s needs, they are often more adamant about adherence than parents are. They provide daily support when parents may not be around, and normalize the behaviors necessary for adherence, even if they are not doing them personally.

For Ellie, interventions with her peers were the biggest catalyst for change. She began by meeting with her mother, her best friend, and her best friend’s mother at home. With the help of her mother, she described and demonstrated her entire regimen. She was surprised how well this went, and noted that they did not seem to think of her any differently. Her best friend encouraged her to share with other friends as well. They identified one friend who was quite squeamish and brainstormed ways to handle things when she was around. Slowly, Ellie began to share more and gain confidence in her ability to manage her illness.

References

Burkhart PV, Dunbar-Jacob J. Adherence research in the pediatric and adolescent populations: A decade in review. In L Hayman, MM Mahon, JR Turner (Eds.), Chronic illness in children: An evidence- based approach (pp. 199–229). New York, NY: Springer; 2002.

Osborn P, Berg CA, Hughes AE, et al. What mom and dad don’t know CAN hurt you: Adolescent disclosure to and secrecy from parents about Type 1 diabetes. Journal of Pediatric Psychology 2013; 38(2):141–150.

This article was originally published in the Brown University Child and Adolescent Behavior Letter in cooperation with Bradley Hospital.