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, has found that limiting factors in the success of such 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 are 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 long-established tools two years after my own heart attack, and by then my adjustment period was pretty well done.
This lack of medical attention to the profound psychological impact of a cardiac event on the freshly-diagnosed heart patient is significant. As Dr. Gilles Dupuis of the Université du Québec and the Montreal Heart Institute reported in the the Canadian Journal of Cardiology, post-traumatic stress disorder following a heart attack is a largely under-diagnosed and unrecognized phenomenon that can actually put survivors at risk of another attack.
Back in 1997, an Oregon study reported in the Journal of Acute and Critical Care did look at the meaning of illness for women diagnosed 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. causality
Researchers concluded that the way we try to seek understanding contributes to how our health care professionals can assess the decision-making behaviours and lifestyle choices of women living with coronary heart disease.
About 16 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, by the way). The four conditions 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 a serious disease diagnosis.
He wrote in the Canadian Medical Association Journal back in 1983:
“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
- how we cope with illness
One interesting study reported in the Journal of Clinical Nursing 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 serious illness (to the surprise of nobody who’s ever been diagnosed with one) is indeed an important stress factor, adding that a number of issues must be taken into consideration when providing medical help to such patients, including:
- how the person perceives the illness
- the impact the illness has on the person’s life
- a determination of the degree of depression being experienced by the person
In a German study, 387 female 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
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 comparatively neutral or positive meanings like ‘challenge’ or ‘opportunity’.
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 can 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, this one 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). 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.
But 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.
In a Dutch study, 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.
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)
Q: How would you have described your own reactions to a serious diagnosis?
NOTE FROM CAROLYN: My book, “A Woman’s Guide to Living With Heart Disease“, was published by Johns Hopkins University Press. You can find this book:
- at your nearest library branch
- at all bookstores (please support your local independent bookshops while they still exist)
- order it online (paperback, hardcover or e-book) at Amazon
- order it directly from Johns Hopkins University Press (and use their code HTWN to save 30% off the list price when you order)