There are at least 12 commonly used measurement tools available to the medical profession that look at how patients navigate “the search for meaning in chronic illness”. Clinical tools like the Psychosocial Adjustment To Illness Inventory or the Meaning of Illness Questionnaire have been used on cancer and AIDS patients, as well as others living with chronic disease. But research, including this study, found that limiting factors in the success of these 12 tools included “the infrequent use of some of the instruments clinically or in research.”
I can’t help but wonder why these readily available assessment tools are not being administered routinely to patients who have been freshly diagnosed with heart disease – a serious medical crisis that begs to be examined for its influence on our “psychosocial adjustment” to it. I only learned about these tools two years after my own heart attack.
This lack of medical attention to the profound psychological impact of a cardiac event is disturbing. As Dr. Gilles Dupuis of the Université du Québec and the Montréal Heart Institute reported in the Canadian Journal of Cardiology, post-traumatic stress disorder following heart attack is a largely under-diagnosed and unrecognized phenomenon that can actually put survivors at risk of another attack.
As far back as 1997, an Oregon study reported in the Journal of Acute and Critical Care looked at the meaning of illness for women with coronary heart disease. Researchers found that meaning actually evolved over time in a process they called seeking understanding.
At the onset of symptoms, the women survivors in the study described three early responses:
- 1. denial
- 2. acknowledging
- 3. being scared
The women also described four additional themes that emerged after obtaining medical attention:
- 4. naming the illness
- 5. seriousness of illness
- 6. comparing self with others
- 7. cause of the illness
Researchers concluded that a patient’s process of seeking understanding contributes to how health care professionals can assess the decision-making behaviours and lifestyle choices of women living with coronary heart disease.
About 10 years ago, a Russian study also looked at heart patients using a number of psychosocial coping strategy assessment tools. They identified four cardiac conditions, any one of which substantially increased the negative subjective meaning of the disease for patients. I had two of these. They are:
- 1. the onset of heart disease in midlife (younger than 65 years) with its subsequent fast progression including high incidence of recurrent coronary events and/or congestive heart failure
- 2. “typical” and protracted angina pectoris (chest pain)
- 3. cardiac arrhythmias (irregular heart beats) accompanying persistent high heart rate and defying any self-care
- 4. severe heart failure
An early pioneer in the development of these coping strategy assessment tools was the late Dr. Zbigniew Lipowski of the University of Toronto, who identified eight categories of meaning that capture how patients respond to stressful events like a serious disease diagnosis. As he reminded his colleagues in the Canadian Medical Association Journal:
“Medical educators have emphasized the need for physicians to acquire the skills to deal with psychological aspects of patient care and to evaluate patients’ psychosocial reactions to physical illness.”
Dr. Lipowski also listed three general types of reaction to illness based on:
- the personal meaning of illness
- emotional responses to illness
- modes of coping with illness
Considerable research using these psychosocial assessment tools on patients diagnosed with serious illness has been done. One interesting study reported in the Journal of Clinical Nursing on the use of these tools on hospital in-patients (55% of them women, mean age 37) found that 47% of the patients studied had poor adjustment scores.
Researchers found that psychosocial adjustment to their illness was affected by a number of important factors:
- having children
- locus of control
- perceived social support
- information level about their illness and its treatment
- tendency towards escape-avoidance behaviours
- planned problem solving
- positive re-appraisal
Researchers concluded that physical illness is indeed an important stress factor, adding:
“In providing medical help, a number of factors should be taken into consideration, including how the patient perceives the illness, the impact the illness has on the patient’s life, and a determination of the degree of depression being experienced by the patient.”
In a German study, 387 cancer patients (81% with breast cancer) were asked to complete Interpretation of Illness Questionnaires (IIQ) based on the eight categories used by Dr. Lipowski to assign meaning to their diagnosis. Patients were asked to rank their responses to the statement “I regard my illness as …”
- 1. as a challenge – a life situation that consists of multiple tasks that must be mastered
- 2. as an enemy – like an invasion of harmful forces that have entered your body and your life
- 3. as a punishment being delivered justly or unjustly for your lack of perfection
- 4. as a sign of weakness
- 5. as a relief from your typical life stresses
- 6. as a strategy to use in trying to get more nurturing attention from the family and the rest of the world
- 7. as an irreparable loss of valuable aspects of life
- 8. as an opportunity for growth and development
Researchers correlated the eight items on this questionnaire with health-related quality of life, anxiety/depression, fatigue, life satisfaction, and adaptive coping strategies. Their conclusions:
- Patients who know they are in a progressive state of disease will interpret their illness more negatively than positively.
- Health is a changing continuum, and patients have to adapt their strategies to changing situations. These strategies and also their interpretations of disease may change during the course of illness.
- Changing negative illness interpretations and depressive/avoidance coping by means of an intervention and encouraging social support by means of patient support groups may improve quality of life.
A study from the University of Miami identified differences between certain illness-coping behaviours such as:
- ‘resignation/acceptance’ (accepting the fact that a stressful life event like a serious disease diagnosis has occurred and is real)
- ‘focus on and venting of emotions’ (increased awareness of one’s emotional distress, along with a tendency to ventilate or discharge those feelings)
Another study out of the University of Texas looked at the consequences of denial in those diagnosed with serious illness, and at the differences between ‘active’ and ‘avoidance’ coping strategies. First they identified risk factors (negative life events like a serious disease diagnosis) and resistance factors (qualities that could help mitigate risk factors, such as self-confidence, an easygoing disposition, family support, etc.) Patients with ‘active coping strategies‘ tried to change either the nature of the risk factor/stressor itself (living with the disease) or how they thought about it. In contrast, those with ‘avoidance coping strategies‘ tried to prevent a direct confrontation with the stressor, a reaction that researchers found could lead to substance abuse or depression. Significantly, they identified avoidance as a psychological risk factor or marker for adverse response to a serious illness diagnosis.
In a 2005 study, Dutch researchers found that younger patients used active coping strategies significantly more often and they perceived more internal control over the cause of their disease. In contrast, older patients used religious coping and religious control more frequently at all assessments. In both groups, like the Texas study’s findings, avoidance coping was associated with more depressive symptoms and a worse quality of life.
And a University of Manitoba study of over 1,000 Canadian women with breast cancer showed that patients who were assessed using the eight categories of meaning described what breast cancer meant in their lives in several ways:
- the majority (57%) chose ‘challenge’
- a minority described breast cancer as providing ‘something of value’ (28%)
- 8% chose ‘enemy’
- 4% chose ‘irreparable loss’
At follow-up assessment three years later, the women who had ascribed a negative meaning of illness with choices such as ‘enemy’ or ‘loss’ had significantly higher levels of depression and anxiety, and poorer quality of life than women who had indicated a comparatively positive meaning like ‘challenge’ or ‘value’.
Overall, among the many possible ways humans cope with disease, two general strategies can be distinguished:
- problem-solving (do something active to avoid stressful circumstances)
- emotion-focused (try to regulate the emotional consequences of stressful or potentially stressful events)
NOTE FROM CAROLYN: I wrote much more about how we adapt to going from being a “person” to becoming a patient in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).