Are your patients hearing what you are telling them? You can improve their understandingand thus their health outcomesby enlisting them as partners.
Effective management of chronic illnesses requires effort, learning, and active participation by patients and their families. Like diabetes, asthma is complex in its requirement of home treatment plans and of the patients commitment to maintain optimal health by avoiding complications or exacerbations.
As an asthma expert, you are the key element in the continuum of education that starts at the time of diagnosis and continues throughout the illness. But disease experts are not always experts in patient education.
What Your Patient Needs to Know
The focus on the patient as the center of the educational effort is critical to successful self-care. First, assess the patients needs so you can individualize teaching. Some clinicians skip this step when caring for patients whose diagnosis is long-standing, but having asthma for a long time does not always mean the patient has up-to-date information. When you begin to work with asthma patients who are new to you, include a few questions so you will know what they know, and what misconceptions you need to correct.
Mr Byron told me his albuterol inhaler was worthless or brokenhe didnt like it one bit. He said he couldnt feel it working the way he could feel the effects of his old inhaler. Before I could begin to troubleshoot the albuterol inhaler, he pulled an old, isoproterenol inhaler from his pocket. Of course, he was rightthe albuterol would not give him the tachycardia, tremors, and side effects he felt with the outdated inhaler, which he considered evidence of its effectiveness.
Not all patients learning needs will be so clear. One of the quickest ways to assess knowledge is to ask patients to describe the medicines they take for their asthma and what other things they do to keep their symptoms under control. This will let you know if they understand differences among asthma medicines and trigger avoidance measures, and if they have a formal asthma management plan, as recommended by the National Asthma Education and Prevention Program.1
Try to pin down the patients past experience with asthma (including exacerbations, emergency department visits, and hospitalizations), what the patient expects from an asthma management plan (a cure?), and the availability of support systems.
|Table. Comparing pedagogic and andragogic (one-way from teacher to learner) approaches to asthma education.|
Focusing Educational Efforts
Once you have identified the patients knowledge base, you can next evaluate patient characteristics that affect learning. Determine if the patient is ready to learn. Emotionally, the patient needs to accept the diagnosis before he or she will be ready to learn more about the disease, symptom management, and an often complex treatment plan. Evaluate each patients coping skills, whether the patient is in denial or has rationalized the asthma by blaming it on an unrelated factor. It often takes patients a period of time before they come to accept that they have a chronic illness that will require changes in their everyday lives, and that length of time will be different for each person. It can be a challenge to work with them while they go through this acceptance phase, because they may initially reject educational efforts and daily medication as part of their denial, which clearly puts them at risk for an exacerbation. The harder you push, the stronger denials can become; that is why recognizing this mind-set is so important.
This leads to the next step: evaluate whether the patient is willing to learn. To be willing to learn, patients need to realize there is a gap between what they know and what they need to know to manage their asthma effectively. If the patient thinks he or she knows it all, and the asthma is under good control, you may want to revisit education at another time. If the patient is sick, you might start a conversation like this, You really know a lot about managing your asthma. Can you help me understand what caused this worsening of your symptoms? By asking patients to teach you, you show respect for their knowledge (which is often considerable) and get them to talk, thus exploring areas in which you may be able to provide additional information in a nonthreatening way. This approach also reinforces the concept of developing an asthma partnership between the patient and clinician.
Third, assess the patients ability to learn. You may have a ready and willing patient, but many factors can interfere with the ability to learn, such as shortness of breath; lack of sleep; cultural issues relating to health beliefs, illness, gender roles, and assertiveness; and low literacy levels.
Mr Byron just didnt want to listen to my theoretical explanation about how selective beta2 MDIs work, no matter how hard I tried. It became obvious I wasnt meeting his needs, so I had to be more creative and find an approach that would have meaning for him. He kept talking about not feeling the effects, so he didnt believe albuterol worked. I asked him if he would be willing to consider alternative evidence, such as measurements of his breathing before and after using albuterol. I suddenly had his full attention. Objectively measuring breathing was a more concrete concept that made sense to him. Since he hadnt been using the albuterol (and the old MDI was empty), I was reasonably certain that his peak flow would improve with a properly administered dose. I measured his peak flow before and after he used the albuterol inhalerwith coaching on techniqueand there was a noticeable improvement. Once he saw those higher numbersproof in his lexiconhe was interested in hearing about how this new medicine could work when he couldnt feel it. I now had the chance to tell him how albuterol could be an important part of his asthma management plan.
My mistake with my initial approach to Mr Byron was that I was very busy, and defaulted to what I was most comfortable withan explanation of the details about why albuterol was really a better drug for him with fewer side effectsa patient version of what I would explain to RT or nursing students. I did not realize I needed to change my usual approach to one customized to the patients frame of referencehis considerable personal experience based on feeling the effects of the old isoproterenol inhaler.
Be aware of how you learn best, because that is how you naturally will feel most comfortable teaching. Once you are aware of your preference, you can consciously determine if that approach will work best for your patient. If you prefer reading as a way to learn, you are more likely to provide patients with booklets and other written material. But, if the patient has low literacy skills, that approach may be ineffective.
With, Not For, the Patient
Broadly speaking, there are two theoretical approaches to teaching. In pedagogy, the teacher is an all-knowing, all-seeing expert who knows what is best for the learner. The educational process is focused on and totally directed by the teacher. As the word suggests, this approach has traditionally been popular for teaching children.
Problems crop up when clinicians use the same approach with adults because adults will inherently reject being told what they must learn and how they must learn it, particularly if it is on your schedule, not theirs. Instead, you can use the theory of andragogy, in which teacher and learner share responsibility for education as equal partners in the process.2 (See table.) The focus shifts from the teacher to the learner. Once you realize the responsibility is shared and that your job is to provide information in a manner that is accessible to the individual, it frees you from being the asthma police, because the patient also has a jobto ask questions and to speak up if something is not clear or if instructions will not fit with his or her physical abilities or lifestyle.
Nationally, according to the National Adult Literacy Survey,3 21% of adults (40 to 44 million people) are functionally illiterate and read at or below a fifth-grade level. In addition, another 25% (50 million) are marginally literate, meaning 90 million Americans are going to have trouble understanding written self-care instructions (including prescription labels) and print educational materials. The National Institute for Literacy4 notes that of adults with asthma who read at a third-grade level, only 31% knew they needed to get regular health care even when they were not symptomatic, and 45% knew they should avoid allergens. Compare percentages for those who read at a 12th-grade reading level: 93% knew they needed regular care and 89% knew they should avoid allergens.
One study looked at the relationship between reading level and self-care for patients who came to an Atlanta hospital for asthma care, in either the asthma clinic or the emergency department.5 Patients with low reading levels (sixth grade or below) had significantly less knowledge and much poorer skills using an MDI than did those who were better readers. More important, even attendance at the special asthma clinic did not overcome the negative impact of poor literacy on asthma management. These researchers correlated lack of reading skills not only to lack of knowledge, but also to fewer positive behavioral changes needed for effective asthma management.
The current standard of practice for treating asthma is to provide patients with an individualized written asthma management plan as a key component of their care. The goals of this approach are to enhance patients understanding and retention of information from teaching sessions and to improve their ability to follow the treatment plan when their condition changes, such as when there is a decrease in peak expiratory flow. New York researchers evaluated model treatment plans in published guidelines from the National Asthma Education and Prevention Program (NAEPP) (six plans); the 2000 Pediatric Asthma Guidelines from the NAEPP, American Academy of Pediatrics, and the American Academy of Allergy, Asthma, and Immunology (two plans); and the Global Initiative for Asthma (GINA) (one plan) to see if they met readability standards of a reading level at fifth grade or lower.6 The average grade level of these model written plans ranges from 5.7 to 9.2; thus, none meets recommended readability standards. If limited to United States documents, the readability ranges from grade 7.0 to 9.2. We already know that many people do not follow written asthma plans. Now we need research to determine if the high readability level is a significant factor.
Barriers: Cultural Viewpoints
Three studies examined health disparities among African-Americans with asthma because the hospitalization and death rates in this population are twice those of white persons.7-9 Research was designed to determine if there are identifiable cultural beliefs that clinicians can address through patient education to improve health outcomes.
A Philadelphia study7 conducted focus groups to explore patients perspectives on inhaled corticosteroid (ICS) use. Five primary issues emerged:
- Self-assessmentthe person decided he or she did not need daily medicine, even though it was prescribed that way.
- Problems getting medication because of either lack of insurance or very restrictive formularies requiring authorization letters or special forms.
- Social interruptions or distractions because persons were members of large households, they were hurried, or they had trouble scheduling the dosing during their daily activities.
- Patients who would have been late for a dose chose to skip the dose and start over on the proper schedule the next day to avoid potential adverse effects of doses too close together.
- Fear of side effects.
A study from Cincinnati8 explored barriers to asthma care for urban children by interviewing parents. These researchers identified four key themes:
- Many parents modified the prescribed plan because their health beliefs did not equate medication with symptom control and believed taking daily medicine was bad for their children; they preferred nonpharmaceutical, more holistic approaches such as breathing exercises and changing what the children ate.
- A number of parents restricted their childrens activities because they did not understand the difference between baseline management approaches and those used during symptomatic periods.
- Parents described their own anxiety about having a child who could have an attack at any time and their perception that health care providers did not understand the fear they live with.
- Parents expressed concerns about the lack of full-time school nurses; they were concerned that other school personnel would not be able to identify symptoms of an exacerbation.
A third study examined sociobehavioral factors that can act as barriers to asthma self-care.9 The key factors identified confirm other research: first, it is important for clinicians to specifically evaluate each patients perspective on the role, benefits, and potential adverse effects of ICS therapy. Second, clinicians should explore health beliefs, personal perceptions about medication use for asthma in general (safety, benefits, and side effects), and any other cultural beliefs that may affect whether a patient will follow a self-care plan.
Successful asthma management requires a partnership between the RT and the patient (or parent). Key to optimizing that partnership is careful patient assessment so you can individualize your approach to each patients unique educational needs and potential barriers to self-care. Showing respect for patients from cultural backgrounds different from your own and for those who have different beliefs will go a long way to earning trust that will maximize positive patient outcomes.
Patricia Carroll, RRT, RN, BC, CEN, MS, is the owner of Educational Medical Consultants in Meriden, Conn, and is the health care coordinator for Shelter NOW, a homeless shelter in Meriden.
1. National Asthma Education and Prevention Program. Expert Panel Report II: Guidelines for the Diagnosis and Management of Asthma. 1997. National Institutes of Health, National Heart, Lung, and Blood Institute. Publication No. 97-4051. Available at: http://www.nhlbi.nih.gov/guidelines/asthma/asthgdln.pdf.
2. An introduction to andragogy and pedagogy. Learnativity.com 2002. Available at: http://www.learnativity.com/andragogy.html.
3. National Adult Literacy Survey 1993. National Center for Education Statistics. Cited in National Institute for Literacy Special Collections available at: http://www.worlded.org/us/health/ lincs/facts.html.
4. National Institute for Literacy. Literacy and health. Available at: http://www.nifl. gov/nifl/facts/health.html.
5. Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 1998;114:1008-1015.
6. Forbis SG, Aligne CA. Poor readability of written asthma management plans found in national guidelines. Pediatrics. 2002;109(4):e52.
7. George M, Freedman TG, Norfleet AL, Feldman HI, Apter AJ. Qualitative research-enhanced understanding of patients beliefs: results of focus groups with low-income, urban, African American adults with asthma. J Allergy Clin Immunol. 2003;111:967-973.
8. Mansour ME, Lanphear BP, DeWitt TG. Barriers to asthma care in urban children: parent perspectives. Pediatrics. 2000;106(3):512-519.
9. Apter AJ, Boston RC, George M, et al. Modifiable barriers to adherence to inhaled steroids among adults with asthma: its not just black and white. J Allergy Clin Immunol. 2003;111:1219-1226.