Helping patients manage their condition: Illness representations matter

By Yael Benyamini, Tel Aviv University, Israel and Evangelos C. Karademas, University of Crete, Greece

Anna and Mary are both healthy 45-year-old women, living in a large European city. Each of them knows several people who have contracted COVID-19 and constantly hears and reads about it. Anna believes it is a very serious disease, and is very concerned that if she contracts it, even though she believes that given her age she will recover, she will probably suffer from long-term bothersome symptoms. She works from home as much as possible, never walks outside without a mask, and is waiting for the next dose of vaccination.

Mary thinks COVID-19 is “the flu with good public relations”. At her age, and with no underlying medical problems, she believes that even if she contracted it, she will most probably not feel much or, at worst, spend a few days at home, feeling as she does when she has a cold. She meets many people at work and during social events and only wears a mask where absolutely necessary. She sees no reason to get the vaccine and is afraid of its side effects. 

Anna and Mary share a common characteristic. Although they don’t see things the same way, they both try to make sense of the same threatening situation. When confronted with a health threat, be it COVID-19, heart disease, joint pain, or any other problem, we all gather information about it from our own bodily sensations, our personal history, others around us, and the media. Our goal is to form a coherent story of the disease. To do so, we try to figure out and combine five main components of the illness perception or illness representation: Its identity, causes, consequences, timeline and the ability to cure or control the disease.

Does it matter what we think about the disease? Even though our representations of the disease may not be medically accurate, yet they will determine how we feel and what we will do about it: how we will cope with the illness, what we will do to prevent  symptoms, how to control or cure it, or to integrate it into our life, if possible. Studies have shown that negative illness representations (e.g., a perception of illness as very threatening, long-lasting, or uncontrollable/untreatable) are related to coping behaviors and outcomes such as poorer quality of life, slower recovery from illness, and worse functional status in several conditions, like cancer or diabetes

As practitioners, we should ask patients about their perceptions of their illness, or one they are at risk for, in a non-judgmental way. We could simply ask them what they think about their condition in their own words; what they think that caused it or what are the most concerning symptoms; if their treatment works or what they do to cope or manage illness. We could even ask them to draw their disease, as the drawing may reveal a lot about how they think and feel about it. Patients are not often asked about their own view but most of the time they are open to such a discussion. Inquiring about patients’ representations is also important for physicians or other health care providers, since understanding and addressing patients’ views of their condition and their link to behavior (e.g., adherence to advice) may facilitate patients’ adaptation. For example, helping Mary realize that the potential side-effects of the vaccine are not comparable to the actual impact of COVID-19, should she contract it, might also help her change her initial decision about vaccination. This can be a first step towards a more systematic individual or group intervention, tailored to patients’ representations, to achieve maximum effectiveness.

Encouraging patients to share their view of their illness can also help in identifying maladaptive perceptions. One should be careful, however, about the decision to try to change patients’ illness representations. For example, a patient may hold a not very accurate representation of illness identity, but this may be useful in relieving their anxiety. A practitioner should keep in mind that illness representations are only a part of a broader, dynamic self-regulatory system, which also includes coping behaviors and action plans, outcome appraisals, etc. Hence, a practitioner should probably co-examine all these aspects of the patient’s experience and condition, and then determine, in collaboration with the patient, how and with respect to which representations to intervene. Both top-down (i.e., abstract/cognitive) and bottom-up (i.e., concrete/behavioural) intervention strategies can be used with success. Often, it is equally important to also examine and discuss the representations of family members– parents, spouses and others, since these may impact patients’ own representations and behavior.

Practical recommendations      

  1. Assess illness representations – understand how the patient is making sense of their condition: Let them tell their story of the health problem in their own words, not in medical terms, and further probe in a non-judgmental way, using open questions or drawings. You may ask the partner or other family members or caregivers for their views (which may differ from those of the patient and affect the support they provide).
  2. Assess treatment representations – patients hold their own view of the treatment’s effectiveness, benefits, risks and consequences, which often impact adherence to medical advice.
  3. Identify inaccurate or dysfunctional representations or “irrational” beliefs, as well as their links to behavior or well-being. Please, remember that the way a patient understands their condition is “psychologically correct”, i.e., it makes sense to them. So, a representation might seem “inaccurate” to you, but not to the patient. 
  4. Help the patient change their view of illness – if illness representations are related to dysfunctional behaviors or threaten well-being in the long run, you can help patients modify them by (a) providing accurate information, (b) using examples of other patients who hold more functional representations (or let your patient interact with them), (c) using specific intervention techniques. Even short texts can do the job! 
  5. Support the patient in developing functional illness-related action plans that are consistent with their (equally functional) representations and relevant to their life. Illness representations are not easy to change, particularly in later stages of the disease. So sometimes it is better to focus on behavior than representations.

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