A Clinician's Guide to Helping Children Cope and Cooperate with Medical Care: An Applied Behavioral Approach

CHAPTER 11. Adherence with Oral Medication and Other Medical Self-Care

216 chapter 11 Adherence with Oral Medication and Other Medical Self-Care in this chapter • Individuals with chronic medical conditions must adhere with a variety of medical self-care tasks on a daily basis in order to manage disease and maintain optimal health. • This chapter focuses on adherence with oral medication and diabetes self-care in children and adolescents because the research literature is better developed in these areas. • The behavioral and environmental variables that influence adherence with these activities are similar across many chronic medical conditions and regimens required to treat them. • Motivation, response effort, skill mastery, social support, planning, organization, and memory abilities are variables that influence adherence across conditions and regimens and are considered here. • Methods of assessment and measurement of adherence are reviewed. • Barriers to adherence and intervention strategies to improve adherence are discussed. • Supporting literature and a case example are presented. 11.1. patient population and target problem(s) Ingesting oral medication, conducting blood glucose tests, administering injections, performing breathing (e.g., nebulizer) treatments, wearing a breathing mask while sleeping, self-catheterization, and suctioning a adherence with oral medication and self-care 217 tracheostomy are some of the many health care procedures with which individuals with chronic medical conditions must adhere on a daily basis in order to manage disease and maintain optimal health. This is the case whether the patient is an infant, toddler, teenager, or adult and regardless of level of intellectual and developmental functioning. Of course, the extent to which responsibility for maintaining adherence lies with the patient or a caregiver varies with the age and the intellectual and developmental functioning of the child. In many cases the child is completely dependent on the parent or caregiver to administer care and adhere with a prescribed regimen. However, as children become older and increasing their independence is developmentally appropriate, the responsibility for adherence must begin to transition from the caregiver to the patient. Negotiating this transition can be a complicated and challenging process for children and their caregivers. An extensive amount of research has and continues to be conducted on how best to ensure medical regimen adherence across developmental phases. A portion of that research and assessment and intervention procedures resulting from that research are presented below. This chapter focuses primarily on adherence with oral medication and diabetes self-care in children and adolescents because the research literature is well developed in these areas. Nonetheless, the behavioral and environmental variables that influence adherence with these activities are similar across most chronic medical conditions and regimens required to treat them. 11.2. assessment and measurement Assessing and measuring adherence is not an easy undertaking. The most common approaches to measuring adherence have relied on interviews and questionnaires. The investigators in this area have developed a set of standards for increasing the chances of obtaining valid responses to these assessments. For example, interviews are conducted using a structured format, nonjudgmental wording of questions, and a short time period such as over the preceding week; interviewing the child and caregiver separately; normalizing occasional nonadherence; and prompting for recall of barriers to adherence.1 Adopting these standards, some researchers2 developed the Medical Adherence Measure (MAM), which is a structured interview assessment of patients’ knowledge about their medication adherence behaviors , organizational systems, and barriers to adherence and disease management over the past week. Patients are asked if they have encountered 218 helping children cope with medical care each of 12 commonly occurring barriers to adherence. They are also asked to indicate the number of doses of each of their medications they have missed over the past seven days. The MAM has been studied and shown to have acceptable reliability and validity.2–3 Another established method for measuring adherence involves conducting a medication quantity count either in clinic or by phone to determine the number of pills or amount of liquid remaining relative to the prescribed amount, dosage, and schedule.4–5 A number of other methods for measuring adherence with medication and other disease management regimens have been developed by researchers studying adherence to diabetes management in children and adolescents . These measures are nearly always indirect, proxy measures used to estimate adherence because they involve parental and child behaviors that are not easily directly observed by researchers. While self- and parentreport interviews and questionnaires have been studied and validated, their correlation with biochemical measures of diabetic control is not consistently high. Furthermore, adherence tends to...