Pediatric providers need to help patients and their parents develop critical thinking about their personal healthcare and the long-term outcomes from their decisions.
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.
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me of the following: If the toddler cries, then you must stop the intervention, as this indicates that the toddler has rescinded his/her assent to participate.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.
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?
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.
What’s behind ‘No!’?
Here’s another (most likely familiar) clinical vignette: A parent of an 8-year-old child enters the office giving the PNP a note from the teacher, and before the provider can read it, the mother states, “I am not putting my child on any medication.” A quick read of the teacher’s note, a brief discussion with the parent, and a 5-minute observation of the child in the office who is “opening every drawer within reach, jumping on and off the scale, pulling the paper off the exam table, and ignoring his mother’s attempts to stop these behaviors,” leads to a differential diagnosis of attention-deficit/hyperactivity disorder (ADHD) as top on the list of potential diagnoses.
Silently, the PNP wonders what would make this mother walk in refusing medications when she is dealing with similar behaviors at home all the time? Of course, as healthcare providers, we cannot always say what we think. So, this is where the “rubber meets the road.” How do we approach this common scenario and ascertain the health literacy and informed decision-making capacity of a resistant parent?
In this instance, the PNP began by identifying direct observational behaviors present in the office, a rather easy task as the child was somewhat destroying the office at that moment. Next, the PNP posed a question to the mother: “What makes you immediately say, rather firmly, no medications?” This question addressed the mother’s tone and may have, for the first time, permitted her to reflect on her beliefs, concerns, or fears related to medication management. The mother’s answer led the PNP to start the process of determining if, when, and how maternal behavioral change could take place.
The mother was in a state of resistance and would not even consider changing her position on medication management. The PNP provided scientifically based information to the mother, in particular, parental resources on ADHD from the Centers for Disease Control and Prevention (CDC). The child was referred for an evaluation and for talk/play therapy. A primary care behavioral health follow-up appointment was scheduled with the mother and child in 1 month. In the interim, the mother received a reminder via e-mail (her preference, however, texting is good, too!) with the ADHD resource links, and was asked if she had questions. This strategy placed the mother in control of the problem and afforded her the opportunity to make an informed decision.
At the follow-up visit, the mother’s readiness for behavioral change was reassessed. The PNP asked questions pertinent to the health literature that had been referred to the mother to read. The outcome? The mother consented to medication management and talk/play therapy. Three months later, the child arrived at the primary care office for a follow-up visit. His behavior had improved both at school and at home. He related: “I have 2 friends and I got an A in math.” Both the mother and the PNP were very proud of this little boy!
Since the 2004 Institute of Medicine Report (IOM) on health literacy,7 the definition of health literacy has evolved from the “degree to which individuals can obtain, process, and understand the basic health information . . . to make appropriate health decisions” to higher order, abstract thinking in which “individuals have the knowledge, motivation and competencies to access, understand, appraise, and apply health information in order to make judgements and decisions in everyday life concerning healthcare, disease prevention, and health promotion . . . to improve quality of life.”1,8
Indeed, this high-level definition requires healthcare providers to question themselves about ways they can enable pediatric and adolescent patients-as well as their parents-to accomplish this level of critical thinking concerning patients’ personal healthcare needs and the long-term healthcare outcomes that their decisions will yield.