The science of health literacy examining pediatric, adolescent, and the adult-parent healthcare decision making is in the earliest stage of development. The majority of the published work involves systematic or integrative reviews of health literacy in childhood and youth1,2; measurement of child and adolescent health literacy3; and parental health literacy.4,5
The outcomes for each of these reviews calls for researchers to design and implement rigorous investigations on health literacy in order to establish an evidence base for interventions to improve health literacy and decision making. While awaiting such roadmaps, however, practitioners can embrace our ever more critical clinical role in the here and now by ensuring that our guidance “clicks” with patients right at point of care. Reaching that “click” starts with our first assessing where our patients stand on the long continuum of comprehension, and how equipped they are to become informed decision makers about their own health.
What’s the real age of reason?
In our pediatric/adolescent practices, at what age can we anticipate that a child or adolescent is capable of personal healthcare decision making? I recall a discussion I had with a member of the Institutional Review Board (IRB) concerning a study I was planning to conduct on the social-emotional development of toddlers6 and the toddler’s assent to participate. The IRB member informed me of the following: If the toddler cries, then you must stop the intervention, as this indicates that the toddler has rescinded his/her assent to participate. I did respect that viewpoint for the duration of the study. However, that viewpoint is not a reasonable approach for healthcare decision making, because, as we all know, toddlers often cry when we enter the examination room.
School-aged children with chronic illnesses may be able to participate in healthcare decisions. They are concrete thinkers. They may be given 2 options for treatment that are expected to lead to similar positive healthcare outcomes. Offering those options to the parent and child may enable shared decision making; foster objective, concrete thinking abilities in the child; and empower the child to feel good about his/her personal health. These are important aspects of healthcare and well-being for a child with a chronic illness, and worth implementation when appropriate in clinical practice.
Getting kids ‘decision capable’
Adolescents aged as young as 13-years, on the other hand, do have the legal right in many states to make personal healthcare decisions about sexual healthcare, including birth control, treatment for sexually transmitted infections (STIs), human immunodeficiency virus (HIV) testing, and, if pregnant, decisions about their care and the care of the baby after birth. Drug and alcohol testing and treatment are also within the purview of adolescents in many states. The question that arises is: How are healthcare providers assured that adolescents are capable of these decisions? Some of the literature suggests that schools should take the lead on preparing children and adolescents to be health literate. Thus, should healthcare providers be partnering with local and state school systems and the respective Boards of Education to contribute to curricular development that can achieve the objective of developing health literacy in the child and adolescent populations?
The fear factor
Not long ago, a healthy adolescent was in my office for her preparticipation sports physical. She reported having had her 4 wisdom teeth extracted 2 days prior to this visit. She asked me: “Will my face be permanently numb?” Upon further questioning, I learned that this was the first time she had had the opportunity to sign her own consent, as she had just turned 18 years old. The oral surgeon had told her that permanent numbness was a possible postoperative complication, but she was afraid to ask any questions and had simply signed the consent. She admitted her facial numbness for the past 2 days to me, that she had not called the oral surgeon’s office, and that she was now very concerned about permanent numbness. (Happy to report that the numbness resolved).
Had she received any education on the meaning of informed consent prior to turning 18? Did she understand what rights she had when she signed the informed consent? How do we recognize adolescents who are afraid to ask questions?
How many of us determine if the adolescent in our care is health literate, can actually make an informed decision, and sign a consent for treatment? Do we consider: Can the adolescent appraise the presenting evidence? Does the adolescent thoroughly understand the proposed treatment plan? Does the adolescent understand the consequences of nonadherence to the plan? These are all questions we must consider when assessing health literacy prior to asking an adolescent to sign an informed consent based on the current definition of health literacy.
Here is an example: A 15-year-old female was in the care of her grandmother (GM) who was dealing with the sudden deaths of her son (the child’s father) and her daughter-in-law. The adolescent was a new patient presenting with a large atrial septal defect (ASD) and cardiac-associated symptoms. The GM was not aware of the adolescent’s medical problems, but knew she was “behind in school” and had, on occasion, seen a cardiologist in another state. After a comprehensive examination and consultation with a cardiologist, the treatment plan was for an ASD repair. The adolescent adamantly refused to consider that treatment plan. Her GM decided that it was her granddaughter’s decision and she would not interfere.
After several healthcare team discussions, the decision was made to provide the patient with one-on-one counseling with a child psychologist and monthly assessments (talk time) with the pediatric nurse practitioner (PNP) in the practice. The psychologist focused on bereavement and personal health, while the PNP used motivational interviewing (MI) to enable the adolescent to better understand her health problem, treatment plans, and the potential risks of nontreatment.
Our initial efforts and plans were unsuccessful; the problem became complicated by an unplanned pregnancy. The reason the patient gave for pregnancy? She had lost both parents and needed someone to love her. The pregnancy, however, did offer us an opportunity to have several healthcare providers see her on a regular basis: monthly visits with the PNP, an obstetrician, a psychologist, the cardiologist every other month, and nurses in each of these offices. The team “all provided the same agreed-upon message concerning health and the responsibilities of raising a child using MI techniques so the patient could be the one to make the decision. The final outcome: safe delivery, recovery, a scheduled and successful ASD repair, and an adolescent mother who understood the need for healthcare for herself and her baby. Better yet, she remained engaged in decision making at her level of understanding for herself and her baby while in the care of the PNP.