In what ways does Urie Brofenbrenner’s Ecological Systems Theory explain adherence barriers to following a treatment regimen for adolescents with epilepsy?
Introduction
Adherence to medical treatment regimens has been an ongoing issue in society in relation to adolescents with chronic diseases. Adherence can be defined as “the extent to which a person’s behavior, in terms of taking medication, following diets, or executing lifestyle changes, coincides with medical or health advice” (Taddeo et al., 2008). During adolescence, there is a high prevalence of low adherence to treatment regimens. This reality leads to undesirable outcomes such as increased chance of death, hospitalization or other medical complications, school absenteeism, poorer overall quality of life, and an overuse of the healthcare system later in life (Lemanek et al., 2001). The French Society of Child and Adolescent Psychiatry estimates that 30 to 50% of young patients with chronic illnesses do not follow their treatment plan, either at all or to its full extent. This paper will analyze adherence barriers in adolescents, specifically looking at Epilepsy.
Several factors come into play when looking at adherence. Some of these include demographics, socioeconomic status (SES), familial status, relationship with health care professionals, perceived outcome of treatment plan, and developmental stage (Taddeo et al., 2008).
External/environmental factors are key indicators of behavior in children and adolescents. Urie Bronfenbrenner, a Russian-born American psychologist, proposed the bioecological systems theory in 1979, published in The Theory of Human Development. The theory, which will be evaluated in more depth later in this paper, explores how the immediate and surrounding environment affects the way children and adolescents develop.
This paper aims to investigate: “In what ways does Urie Bronfenbrenner’s bioecological systems theory explain adherence barriers to following a treatment regimen for adolescents with epilepsy?”
This paper intends to assess Bronfenbrenner’s theory by analyzing two studies relating to adherence to Epilepsy treatment: “Treatment Adherence Among Adolescents with Epilepsy: What Really Matters?” (2018) and “Adherence to Medication Among Outpatient Adolescents with Epilepsy” (2015). After defining key terminology, this paper will explain Bronfenbrenner’s bioecological theory, describe the two studies mentioned above, and discuss the ways in which the theory can explain adherence barriers in adolescents.
Definitions of theories and terms
Brofenbrenner’s Ecological Systems Theory
Urie Brofenbrenner was born in 1917 in Moscow, Russia (Zierten et al., 2021). After moving to the United States at age six, Brofenbrenner attended Cornell University (studied music and psychology), Harvard University (earned a master’s degree in education), and the University of Michigan (obtained a Ph.D in developmental psychology).
Brofenbrenner’s ecological systems theory centers around five systems: Microsystem, Mesosystem, Exosystem, Macrosystem, and Chronosystem. Each system, while playing key roles in development on their own, also interconnects with the others to shape youth and adolescent behavior.
The microsystem refers to direct environments including family, school, and social groups. This is the most influential system, as a child or adolescent has the most connection with these people or groups. Relationships with parents, for example, are strong determinants in the way adolescents communicate with others, their self-esteem, and the attitude and behaviors they exude.
The mesosystem describes the interactions between immediate environments. This could include a relationship between a parent and a teacher or the resources a school provides to students. This system links multiple aspects of a child’s/adolescent’s life such as school and family life.
The exosystem involves external environments that have an indirect influence on behavior and development. Examples include the mass media or the healthcare system. The policies and regulation of these larger institutions impact people of close relation to a child or adolescent. The exosystem also incorporates indirect influences that are more personal, such as a family’s SES or a parent’s career.
The macrosystem encompasses cultural values and beliefs. This system in Bronfenbrenner’s model is a larger societal context that embeds the other three systems. Parts of the macrosystem include, but are not limited to, political culture, educational systems, and the country’s government (Pittenger et al., 2016).
The fifth and final system, the chronosystem, relates to the “patterning of environmental events and transitions over the course of life.” (New World Encyclopedia et al., 2020) Bronfenbrenner argued that the time period in which an individual lives influences development. This overarching system takes into consideration milestones or traumas in a person’s life which have the potential to affect development and behavior.
Epilepsy
Epilepsy is a neurological disorder characterized by unpredictable seizures. 65 million people worldwide are currently living with epilepsy (Epilepsy Foundation, 2014). Symptomatic epilepsy is found to reduce life expectancy by 18 years (at maximum), but following a proper treatment regimen and adhering to prescribed antiepileptic drugs can reduce the frequency of seizures substantially, or eliminate them altogether (Gabr et al., 2015).
There is no current cure for epilepsy or treatment for the cause of the disease, but antiepileptic drugs, or AEDs, attempt to stop seizures – the primary symptom. AEDs are taken orally (most common), by injection, or by suppository. Once AEDs reach the brain, they “make the brain less likely to have seizures by altering and reducing the excessive electrical activity of the neurons that normally cause a seizure,” but the reasoning behind this is not fully developed. (Mayo Clinic, 2021).
Adolescents
The Journal of Paediatrics and Child Health defines adolescence as the time between “the onset of physiologically normal puberty, and… when an adult identity and behaviour are accepted,” which corresponds roughly to between the ages of 10 and 19 years (Canadian Paediatric Society, 2003). This paper will look at adolescents ranging from ages 13-18.
Measuring adherences
General Methods
There are direct and indirect means of evaluating adherence; direct measures are typically more valid, but often harder to obtain for many chronic illnesses. The most objective way to determine levels of a prescribed medication is to take a quantitative or qualitative analysis of body fluids. However, this method has a few downfalls. First, the effectiveness of a drug may be limited by other medication, interference with food, or an individual’s body composition, which could result in an inaccurate assessment of regimen compliance. In terms of ethics, this method could interfere with the relationship between adolescent and health care professional, potentially impacting adherence rates (Taddeo et al., 2008).
There are several indirect ways of gauging compliance levels; alone, these only give slight insight, but utilization of multiple methods can yield more valid results. A conversation with the adolescent about adherence can assess to what extent they are following a regimen. Questions could be asked such as, “Can you tell me when you take your medications?” or patients could be asked to evaluate their adherence on a scale of 1 to 5. A questionnaire filled out by a patient and/or a parent can also be used to self-report adherence, in which similar questions are asked. However, self-reported questionnaires are found to overestimate adherence rates by 30%, and accuracy could be affected by the wording of a question. Another indirect method is to count the number of pills a patient has left after a period of time, and compare it with the number they should have left, assuming they took the medication as prescribed.
While no method of measuring adherence is flawless, there are trials and methods in use that give doctors a better understanding of patient compliance.
Epilepsy Specific
No case of epilepsy looks exactly the same, therefore, no treatment regimen will be identical to any other. Treatments could include one or a combination of the following: anti-epileptic drugs (most common), surgery to remove a small part of the brain that causes seizures, or a ketogenic diet to help control seizures. The two studies this paper will evaluate use a combination of methods listed above to measure adherence including multiple types of self-reporting questionnaires, semi-structured interviews, assessment of patient’s history with epilepsy, and electronic monitoring via MEMS TrackCaps.
Psychological studies relating to adolescent adherence in epilepsy patients
“Treatment adherence among adolescents with epilepsy: What really matters?” (Smith et al., 2018)
Researchers in the behavioral medicine and clinical psychology division at Cincinnati Children’s Hospital Medical Center conducted a study aiming to “identify patterns and predictors of adherence in adolescents with epilepsy over one year, as well as its impact on seizures and health-related quality of life.” The researchers hypothesized that over one year, adherence rates would decline, and in addition, participants with a younger age, shorter time since diagnosis, higher SES, fewer adherence barriers, fewer side effects, greater epilepsy knowledge, and a better family dynamic would be more adherent.
48 adolescent patients with epilepsy at Midwestern Children’s Hospital participated in the study. All adolescents were currently prescribed with only one AED, had not been diagnosed with a significant development disorder, and were proficient in English. The adolescents and caretakers partook in four visits over the course of the year, evenly spaced. Informed consent was obtained for all participants.
For a baseline assessment, caregivers completed a background questionnaire, providing information about the adolescent’s age, sex, and race, and reported the presence of any comorbid disorders. Caregivers’ occupation was used to determine the SES of patients. At each study visit, participants and caregivers filled out several questionnaires and monitored adherence using Medication Event Monitoring Systems TrackCaps.
Caregivers were responsible for filling out the “Quality of Life in Child Epilepsy” at all study visits. This 79-item report tracked the child’s quality of life in 15 domains from age four. A higher score correlates to a higher quality of life. Adolescents completed the “Epilepsy Knowledge Questionnaire” (EKQ), “Parental Environment Questionnaire” (PEQ), and “Quality of Life in Epilepsy Inventory for Adolescents” (QOLIE-AD). The EKQ, a 47-item true/false questionnaire, assessed the patient’s knowledge about the medical and social aspects of epilepsy. The PEQ is a 24-item self-report evaluating the relationship between the caretaker and child, specifically looking at conflict and parent involvement. This questionnaire used a four-point scale with answers ranging from “definitely true” to “definitely false” for adolescents to rank where they best fit for statements such as “My parent often criticizes me.” The QOLIE-AD, a 48-item self-report measure, assessed quality of life through eight subscales: epilepsy impact, memory-concentration, attitudes, physical function, stigma, social support, school behavior, and health perceptions. The patient and caretaker were each responsible for completing the “Pediatric Epilepsy Medication Self-Management Questionnaire,” used in this study to determine self-management of medication, taking into consideration barriers to medication adherence. These barriers included, but were not limited to, being embarrassed to take medication in front of friends or family members or forgetting to take medication. The “Pediatric Epilepsy Side Effects Questionnaire” was completed jointly at all visits. This 19-item measure assessed side effects of AEDs, rating items on a 6-point scale (0 – not present, 5 – high severity). The questionnaire encompassed neurological, behavioral, gastrointestinal, skin, and motor side effects. Aside from the self-reports, MEMS TrackCaps monitored adherence to AED’s electronically. The cap attached to each patient’s medication bottle and registered the dates and times when the medication was opened. The daily adherence data received by the caps was averaged by researchers for each month to end up with 12 adherence data points (defined as number of doses taken/number of expected doses x 100).
The average adherence at the baseline assessment was 86.05%. This rate decreased substantially over the course of the year, by approximately two percent every month. Over the course of the study, average adherence was 74.57%. Several factors played a role in adherence: higher SES, more side effects, fewer caregiver-reported adherence barriers, and less family conflict resulted in better adherence. The effects of all of these factors are consistent with the hypothesis except that higher side effects of the AED yield higher adherence as it was assumed that having negative symptoms from medication would prompt someone to stop taking the AED. However, this result could be explained because “the presence of side effects may serve as a marker of adherence,” because those who are adhering to their medication regimen would experience the symptoms that those who don’t would not. Age, time since diagnosis, adolescent-reported adherence barriers, adolescent knowledge, and parent involvement did not have enough impact to be deemed a predictor of adherence.
“Adherence to Medication Among Outpatient Adolescents with Epilepsy” (Gabr et al., 2015)
A similar study was conducted and published in the Saudi Pharmaceutical Journal back in 2015. This study aimed to “identify the different factors which could affect the medication adherence among adolescent epileptic patients, [investigate] factors that may reduce morbidity caused by recurrent seizures, and [know] how [to] improve the medication adherence among those patients for optimum therapy outcome and enhancement of their quality of lives.” 94 participants ages 13 to 18 participated in the study from December 2011 to January 2014. All participants had been diagnosed with epilepsy for at least one year, had administered at least one AED, had normal neurological and cognitive development, were without severe comorbidities, and had consented to participate in the study.
As with the study run at Cincinnati Children’s Hospital, researchers at Riyadh National Hospital recorded the patients’ history including age at onset of epilepsy, recent frequency of seizures, details about the prescribed AED, and any feelings of stigma. Patients and/or parents participated in interviews and patients filled out the illness perception questionnaire and the beliefs about medicines questionnaire (BMQ). The Morisky Medication Adherence Scale was used during the interviews to collect data. This scale consists of four items with “Yes” or “No” answers. 0 points are awarded for answering yes and 1 point is correlated to “no.” The resulting score will be 0-4. The questions included in the scale were: “(1) Do you ever forget to take your medicine? (2) Do you ever have problems remembering to take your medication? (3) When you feel better, do you sometimes stop taking your epilepsy medicine? (4) Sometimes, if you felt worse, did you stop taking your medicines?” Patients in this study were considered to have poor adherence if they scored 1 or above. The BMQ is comprised of two sections: one measuring beliefs about medications in general and one for the AED. In both sections, participants used a Likert scale (1-5 with 5 being strongly agree and 1 meaning strongly disagree) to rate a variety of statements. The general questionnaire consisted of statements relating to doctors’ overuse of medicine (total scores could range from 3-15), and statements about weighing the harms and benefits of medicines (4-20 score range). The AED specific statements were separated into two categories as well: five statements relating to personal beliefs about the necessity of the medication for maintaining and/or improving health (such as “my health at present depends upon my [AED].”) and five statements ragrding concerns about the potential adverse effects of the medicine (ie. “Having to take my [AED] worries me”). Higher scores out of 25 for each category indicates stronger beliefs. Researchers calculated a differential between the scores for the two areas of statements, with a positive differential score indicating stronger necessity beliefs than concerns, and a negative score indicating stronger concerns about the drug.
The results of this study found that 61.7% of participants were adherent to their treatment regimen, meaning they scored a 0 on the self-reported Morisky scale. Age of adolescent, age of epilepsy diagnosis, and duration of having epilepsy did not have a significant effect on adherence. Factors that did influence adherence included the number of AEDs a patient was taking, the stability of the parents’ marriage, quality of family support, seizure frequency, and the relationship between the patient and healthcare provider. Of adolescents only taking one medication, 40 were adherent and 16 were nonadherent, compared to an 18:20 ratio of those on multiple medications. Participants who had parents with a stable marriage yielded adherence rates of 44:20 compared to those with parents in an unstable marriage (14:16). 39 patients with good family support were adherent, where only 12 were not. Of those with poor family support, 19 were adherent, 24 were not. Patients who had lower seizure frequency had higher adherence, most likely because the AED was working. Regular medical support was also critical, as 37 of adolescents with good relationships with their healthcare provider were adherent, compared to 12 nonadherent. The ratio of adherent to nonadherent for those without regular medical support was 21:24. The results of the BMQ found that 83% reported that the necessity of taking medication was stronger than their concerns. Those who had a high necessity median and a lower concern median yielded higher adherence to their designated regimen. All factors deemed significant in both studies had p-values of 0.05 or lower, meaning there is strong probability that these factors played a role in adherence.
Discussion
As is evident from the two studies above, adolescents with epilepsy, and many other chronic conditions, struggle with adhering to a medication regimen. But why? Many of the factors identified in the studies can be attributed to one’s social environment. Brofenbrenner’s ecological systems theory about social environment and its effects on human behavior and development give insight into how these factors play a role in adherence.
The microsystem, made up of one’s direct contacts would include quality of family support and the relationship between the patient and healthcare provider when relating the systems to poor adherence. In “Treatment adherence among adolescents with epilepsy: What really matters?” (referred to as “study 1” in future), the researchers were unable to determine if family involvement had an effect on adherence, but “Adherence to Medication Among Outpatient Adolescents with Epilepsy” (referred to as “study 2” in the future) concluded that 76% with strong family support were adherent, where only 44% with poor family support took all necessary medication. Study 2 also investigated the impact of the patient-healthcare provider relationship, and found that those with better relationships were 29% more likely to adhere to their medication regimen. The microsystem and people we surround ourselves with have a clear impact on behavior, as evidenced by study 2.
Factors influencing adherence that would fall into the mesosystem include the stability of a parents’ marriage, as well as other family conflicts. Better marriages and less family conflict resulted in higher adolescent adherence. When the groups with direct influence also get along with each other, the effect on behavior is clear. In adolescence particularly, family conflict may be higher due to adolescents wanting more freedom, while adults want to monitor that they are following their regimen, which leads to tension that can result in nonadherence. For example, adolescents may perceive reminders to take medication as “nagging.” If parents are constantly fighting, they may not dedicate enough time to ensure the adolescent is adhering, or may even forget to pick up an AED refill (Smith et al., 2018).
Socioeconomic status and access to healthcare relates to the exosystem, as they affect the adolescent’s life, but are not controlled by or in a direct relationship with the patient. While not evaluated in study 2,patients with families who had a higher SES were more compliant. Low SES is typically associated with financial, transportation, and care access difficulties. This may result in fewer healthcare appointments, difficulty getting refills, and less education about the importance of taking medication.
The macrosystem also plays a large role in adherence, subconsciously influencing behavior in many cases. Epilepsy is a highly stigmatized chronic condition (Gabr et al., 2015), so beliefs about epilepsy from society and the culture of having a disease being seen as a negative influences how patients feel about their disease as well as treatment regimen. For example, especially in adolescents when peer pressure is extremely prevalent in addition to a strong desire to fit in and be “normal,” teens may avoid taking their medications in public or around friends, yielding lower adherence. Beliefs about drug efficacy are also part of the macrosystem, as adolescents develop their views from who they surround themselves with: parents, the media, their peers, school teachers. Those who believed AEDs were more helpful than harmful had better adherence (Gabr et al., 2015).
Neither of the studies in this paper investigated the effects of larger life experiences on adherence, although certain traumas certainly have potential to affect adherence. The chronosystem, however, could come into play in the opposite way. Rather than factors affecting epilepsy adherence, having epilepsy, a serious chronic condition, may impact adolescent’s behavior, interactions, and experiences.
Another thing to note is the adherence rates were different in the two studies! This could be a result of the studies being conducted in different countries with different cultures. As evidenced by the ecological systems theory, culture and a society’s beliefs influence behavior and development. Another reason for the discrepancy could be the method of measuring adherence; study 1 used questionnaires in addition to electronic monitoring, where study 2 used a variety of questionnaires and interviews.
Limitations
Evidenced by the discrepancy in results between the two studies in this paper, there is no 100% accurate way to test adherence. First, self-reporting is unreliable. A 2002 study analyzing three decades of empirical research and over 60 adherence studies found that adherence rates were higher when they were self-reported. The two epilepsy studies in this paper used self-reporting measures, with study 2 relying on the questionnaires exclusively. The questionnaires used in study 1 were all assessed on Cronbach’s alpha scale measuring internal consistency, and every questionnaire scored over .55, with most over .70 and into the .90 range. However, there is no way to check if participants are honest with their responses in interviews and questionnaires. Another limitation of the questionnaires is there are no objective answer choices. For example, when adolescents are reporting family conflict, two people could be in a similar situation, but report it very differently based on how they perceive it. But maybe perception is what affects adherence, rather than an objective measure because adherence is based on psychological well-being.
Second, these studies only measured a small population of adolescents living with epilepsy, and did so in what was not a completely natural environment. The Hawthorne effect in psychology occurs when participants know they are being observed, and tend to act differently. In a 2006 study of hand-washing, when participants knew they were being watched, their adherence was 55% greater (Eckmanns, 2006). In the two epilepsy studies, all patients and guardians consented to the study, so they could have changed their compliance patterns knowing they were being monitored. In addition, in every psychological study, there is no way to know if the results are representative of the entire population.
Aside from limitations of the adherence studies, the Ecological Systems Theory was not created to explain adherence barriers and therefore does not account for every factor affecting patients. The studies found that more side effects of medication, lower seizure frequency of adolescents, and fewer AEDs were indicators of better adherence. These influences do not fit perfectly in one of Brofenbrenner’s systems, but were still helpful to the researchers in determining adherence trends.
Conclusion
Urie Brofenbrenner’s Ecological Systems Theory provides some explanation for the poor adherence in adolescents to their treatment regimens. To answer the question, “In what ways does Urie Bronfenbrenner’s bioecological systems theory explain adherence barriers to following a treatment regimen for adolescents with epilepsy?”, several systems describe the factors limiting adherence. The microsystem explains quality of family support and the relationship between the patient and healthcare provider, the mesosystem relates to the stability of a parents’ marriage, and other family conflicts, SES and access to healthcare fall within the exosystem, and the macrosystem accounts for stigma and belief about drug efficacy. The chronosystem may be affected by a patients’ condition rather than the system playing a role in the disease.
There is no way to guarantee adherence is perfect, but there are ways to improve future adherence. First, educational interventions offer teens and families information about the disease, prescribed treatment, and the importance of the proposed treatment (DiMatteo, 2002). Both studies showed that higher belief in the treatment yielded better adherence, indicating that education about the medicines would be useful. Organizational strategies to improve adherence include clustering appointments for teens who have to see multiple doctors, arranging appointments at times when teens do not have to miss school, and creating a system to take medication at a consistent time of day. The Official Journal of the Medical Care Section from the American Public Health Association found these techniques to improve adherence in adolescents with chronic illness. Lastly, teens can use Motivational Enhancement Therapy, where adolescents are supported through open-ended questions with professionals, affirmations, education about drug efficacy and importance, and time to express any concerns.
BIBLIOGRAPHY
American Psychological Association. (2013, May). Poverty and high school dropouts. https://www.apa.org/pi/ses/resources/indicator/2013/05/poverty-dropouts
Canadian Paediatric Society. (2003, November). Age limits and adolescents. US National Library of Medicine National Institutes of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2794325/
Danielle Taddeo, MD, Maud Egedy, MD, and Jean-Yves Frappier, MD. (2008). Adherence to treatment in adolescents. US National Library of Medicine National Institutes of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528818/
DiMatteo, R., Giordani, P., Lepper, H., & Croghan, T. (2002, September). Patient Adherence and Medical Treatment Outcomes: A Meta-Analysis. Official Journal of the Medical Care Section, American Public Health Association. https://journals.lww.com/lww-medicalcare/Abstract/2002/09000/Patient_Adherence_and_Medical_Treatment_Outcomes_.9.aspx.
E.Bovina, M.Gignonb, C.Millea, B.Boudailliez. (2016, September 1). La non-observance thérapeutique face à une maladie au long cours à l’adolescence. ScienceDirect. https://www.sciencedirect.com/science/article/abs/pii/S022296171600012X
Eckmanns, T. (2006, August). Compliance with antiseptic hand rub use in intensive care units: the Hawthorne effect. PubMed. https://pubmed.ncbi.nlm.nih.gov/16941318/
Epilepsy Foundation. (2014). What is Epilepsy? https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy
Epilepsy Society. (2021, February 2). How anti-epileptic drugs work. https://epilepsysociety.org.uk/anti-epileptic-drugs/how-anti-epileptic-drugs-work
Fisher MD, PhD, R. (2014, April). A Revised Definition of Epilepsy. Epilepsy Foundation. https://www.epilepsy.com/article/2014/4/revised-definition-epilepsy
Gabr, W. M., & Shams, M. E. E. (2015, January 1). Adherence to medication among outpatient adolescents with epilepsy. ScienceDirect. https://www.sciencedirect.com/science/article/pii/S1319016414000425?via%3Dihub
Lemanek, K. L., Kamps, J., & Chung, N. B. (2001, July 1). Empirically Supported Treatments in Pediatric Psychology: Regimen Adherence. Oxford Academic Journal of Pediatric Psychology. https://academic.oup.com/jpepsy/article/26/5/253/2951534
Mayo Clinic. (2021, February 24). Grand mal seizure – Diagnosis and treatment. https://www.mayoclinic.org/diseases-conditions/grand-mal-seizure/diagnosis-treatment/drc-20364165
New World Encyclopedia, Ballard, J., Wieling, E., Solheim, C., & Lang, D. (2020, May 18). Bioecological Systems Theory. Iowa State University Digital Press. https://iastate.pressbooks.pub/parentingfamilydiversity/chapter/bronfenbrenner/
Pittenger, S. L., Huit, T. Z., & Hansen, D. J. (2016, January 1). Applying ecological systems theory to sexual revictimization of youth: A review with implications for research and practice. ScienceDirect. https://www.sciencedirect.com/science/article/abs/pii/S1359178915001767
Smith, A. W., Mara, C. A., & Mod, A. C. (2018, March 1). Adherence to antiepileptic drugs in adolescents with epilepsy. ScienceDirect. https://www.sciencedirect.com/science/article/abs/pii/S1525505017308673?casa_token=u3xihSqGuTgAAAAA:Wsty7ENkSQuCR-6TgNLCf9eS1IvZz03TMeh-DpQiEv9HWk4QtdIyNBAWBhU-5TR9d2YTZkP9#bb0140
Zierten, E. A. (2021, April 25). Urie Bronfenbrenner. Encyclopedia Britannica. https://www.britannica.com/biography/Urie-Bronfenbrenner
Author: Lily Lev
Lily Lev is a rising freshman at the University of Michigan where she intends to study biopsychology, cognition, and neuroscience in hopes of pursuing a nutrition-related profession. This article was written as part of her completion of the International Baccalaureate Diploma Program in high school.
