Lecture 9: Coping With Chronic & Terminal Illness PDF

Lecture 9. In Poor Health: Managing Chronic and Terminal Illness Coping with Chronic & Terminal Illness; Quality of Life; Psychosocial Interventions; Caregiving Health tips 1.​ Blame will get you nowhere 2.​ Your perception of your health is more important than your blood pressure (especially...

Lecture 9. In Poor Health: Managing Chronic and Terminal Illness Coping with Chronic & Terminal Illness; Quality of Life; Psychosocial Interventions; Caregiving Health tips 1.​ Blame will get you nowhere 2.​ Your perception of your health is more important than your blood pressure (especially in predicting long-term health outcomes; subjective health is more important in predicting morbidity/mortality) 3.​ Support groups fight cancer too 4.​ Care for those who care for others Chronic conditions in Canada -​ 44% of adults (20+) have at least 1 of 10 common chronic conditions 1.​ Hypertension: 25% 2.​ Osteoarthritis: 14% 3.​ Mood/Anxiety Disorders: 13% 4.​ Osteoporosis 5.​ Diabetes 6.​ Asthma 7.​ COPD 8.​ Ischemic Heart Disease 9.​ Cancer 10.​ Dementia ​ Most of us are likely to develop at least one chronic condition, that may lead to death ​ Chronic conditions account for ⅔ of Canada’s health spending ​ More common among lower-income Canadians, women, and seniors ○​ Seniors - impact of age-ism - it shouldn’t be assumed that getting a chronic condition is part of getting older Adjusting to chronic illness: coping, adaptation, and psychosocial interventions ​ The initial response: ○​ Immediately after a chronic disease is diagnosed, patients are often in a state of crisis or shock → a reaction of acute stress ​ Stunned, bewilderment, behaving in an automatic and detached way ​ Anxiety (nervousness and worry) and anger (frustration, being irritable, being hostile) are also common emotions experienced and displayed ​ Sense of control is lowered ​ Secondary appraisal is common ​ Evaluation of economic resources (having to sell your home, unable to work = job termination) ○​ Higher engagement in emotion-focused coping ○​ Denial is a common response as well: unable to recognize, accept or deal with the news of a diagnosis  ​ Denial has a mixed role = denial can be OK early on (allows you to stay positive instead of being overwhelmed at the beginning, but can then be problematic when it is prolonged, in preventing you from taking necessary steps to help yourself) ​ Crisis Theory: identifies how people adjust to or cope with a terminal/chronic diagnosis ○​ Appraisal is including in coping process because we know that they way in which the diagnosis is appraised, determines the coping responses that individuals engage in (negative appraisal: maladaptive coping responses) ○​ Depending on the appraisal, the individual will engage in different adaptive tasks and coping skills ○​ Adaptive tasks in coping: 1.​ Tasks related to the illness or treatment a.​ Coping with the symptoms or with the disability of the illness b.​ Adjusting to the hospital environment, procedures and treatments c.​ Developing good relationships with the practitioners 2.​ Tasks related to the general psychosocial functioning a.​ Controlling negative feelings, having a positive outlook = emotion-focused coping b.​ Maintaining satisfactory self-image, sense of competence c.​ Preserving good relationships with family and friends d.​ Preparing for an uncertain future ​ Coping with cancer, over time (what is most adaptive) ○​ Study asked people with cancer about what they thought was the most adaptive response (most useful coping strategies) ​ Social support and direct problem solving (asking someone to help them find out more about their diagnosis) ​ Distancing (type of denial) ​ Positive focus ​ Cognitive escape/avoidance ​ Behavioral escape/avoidance  ○​ Cognitive and behavioral escape are still adaptive because they will help, at least in the short-term, by avoiding stress and allowing people to continue performing daily tasks and activities despite a life-changing diagnosis ​ Maladaptive coping strategies ○​ Rumination: associated with exacerbation of symptoms ​ Dwelling will actually manifest in worsening symptoms because you’re just ruminating over them all the time ○​ Interpersonal withdrawal: associated with loneliness and low relationship satisfaction ○​ Avoidant coping: denial: associated with increased psychological distress; exacerbate the disease process; leads to poor adjustment to the illness ​ Not going to checkups, chemotherapy appointments, avoiding seeing the doctor, etc can all make the illness progress because you’re not taking the steps to help yourself ​ Denial in cancer patients - lots of variability across studies in the commonness of these forms of denial in cancer patients ○​ Denial of the diagnosis: ranged between 4-47% of patients ○​ Denial of the impact (outcomes) ○​ Denial of the emotions ○​ The impacts of these forms of denial on physical and social functioning were inconsistent, and the impact on psychological functioning depended upon the form of denial ​ Some denial might be adaptive, but denying your emotions and denying how the illness might impact you long-term might be more maladaptive ○​ Distractive strategies were found to reduce distress, but passive escape mechanisms decreased psychological well-being ​ Distractive strategies: behaviors which take your mind off the illness and doing something you enjoy ​ Passive escape mechanisms: attempts to avoid thinking about something without engaging in another task ​ Depression ○​ Impact on symptomatology itself ○​ Increasing depression is correlated with increasing symptomatology ○​ Depression can complicated medical evaluations: make it difficult for the clinician to evaluate someone’s health ​ Overlap of symptomatology between illness symptoms and depression symptoms (i.e. fatigue can be a symptom of either, lack of appetite can be a symptom of either) ○​ Pre-existing depression can make it more difficult to adjust to condition (i.e. cancer and other chronic illnesses) ○​ Cancer and depression - impact of depression of survivability (rate of survival) ​ Study: 101 women with metastatic breast cancer; looked at rates of survival; measured depression at 3 different times across 1 year ​ Compared rates of survivability between group with increasing depression and group with decreasing depression  ​ Median survival time: 53.6 months for women with decreasing depression ​ Perhaps improvements in immune functioning; more social engagement ​ Median survival time: 25.1 months for women with increasing depression ​ Decreasing immune function; more interpersonal withdrawal (withdrawing into yourself); more stress; more anxiety ​ Depressing thus has an impact on cancer survivability ​ So, depression can take weeks/months off your life when diagnosed with cancer ​ Cancer stigma ○​ Very prevalent form of stigma: being reduced to just a cancer patient ○​ Research suggests that cancer stigma depends on the extent to which an individual’s identity and sense of self are affected by the diagnosis (i.e. incorporating cancer scars to your identity; accepting hair loss, etc) ○​ The more visible your diagnosis is a strong factor in cancer stigma ○​ Effects: ​ Stigma is associated with more problematic outcomes, such as depression, for people with cancer ​ Cancer stigma was correlated with reduced cancer screenings (especially for cervical, breast, and colorectal cancer) ​ Adaptation: the process of making changes in order to adjust constructively to life’s circumstances ○​ Successful adjustment to chronic conditions, involves engaging in major adaptive tasks that must continue indefinitely ​ Cancer survivorship ○​ Long-term cancer survivors have higher rates of emotional distress (especially those of lower SES, those who are single, and those who are disabled) ○​ And social relationships are impacted, especially for those in romantic relationships ○​ However - most cancer patients display a remarkable amount of resilience Evaluating adjustment ​ Quality of life: the degrees of excellence that people appraise is in their lives (how much excellence is in your life) ○​ Appraisals are based on physical, psychological, vocational, and social functioning ○​ Emphasis is placed on daily living ○​ Quality of Life is also an important indicator of recovery from chronic illness, and an indicator of adjustment to a chronic illness ​ Evaluating Quality of Life ○​ “Would you rate your current health as: 1. Very poor; 2. Poor; 3. Fair; 4. Good; 5. Excellent ○​ self-reported/self-rated health (SRH); subjective health ○​ Medical Outcomes Short Form Health Survey (SF-36) ​ Self-reported health ○​ Subjective health is consistent with objective health: SRH is associated with the prevalence of all diseases; as well as the onset of all diseases ○​ Correlated with laboratory parameters of health  ○​ Stronger indicator of health ○​ Isn’t correlated with the onset of cancer, suggesting that people aren’t very accurate in assessing their risk of cancer ​ Often, you aren’t aware that you are at risk of cancer or that cancer is actually developing ​ ⅔ of cancer cases are caused by random chance, so it makes sense that people aren’t accurate in assessing their risk (if most of it is random) ○​ Subjective health is highly predictive of mortality: stronger predictor of mortality than most clinical assessments of health and objectives indices of physical health ○​ The predictive validity of self-reported health has increased over time (people have become more accurate in assessing their health) ​ In 2002, people who rated their health as poor lived much shorter lives than those who rated their health as excellent, compared to self-assessments of health in 1980 ​ Perhaps because more health information is readily available; more resources to evaluate one’s health (better education?) ​ ‘Satisfaction with life’ Scale ○​ Global evaluations with life: ○​ Associated with morbidity: significant association between this scale of assessing life satisfaction and the onset of many chronic diseases ○​ Life satisfaction also predicts mortality, but less consistently than self-reported health ​ Self-report measures matter more than blood pressure? ○​ Seeing your health as more positive might encourage you to continue engaging in health behaviors; compared to just looking at one measure of health (BP) Psychosocial Interventions for Chronic Illness Many interventions exist: psychopharmacological, patient and family education, individual/family therapy, stress management/relaxation, and support groups  ​ Support groups: cancer ○​ Significant proportion of breast cancer patients attending support groups do so because they believe that they may be extending their lives; belief that they will beat their cancer and go into remission ○​ Study evaluating survival of patients with breast cancer after a 10 year follow-up ​ Support group: mean survival from onset of intervention of 36.6 months ​ Control group (no support group): 18.9 months ​ Significant survival benefit from support groups at one-year, but not at four years (demonstrates a more short-term effect of support group) ○​ Support groups themselves don’t have the ability to make you go into remission ​ Psychosocial benefits of support groups: ○​ Improved mood ○​ Reduced uncertainty ○​ Improved self-esteem ○​ Enhanced coping skills ○​ Improved quality of life Informal Caregiving: the provision of physical/emotional care to a family member or friend at home ​ Caregiving is a chronic stressor ​ Factors in caregiver stress ○​ Not having enough time to care for yourself; feeling overwhelmed ○​ Engaging in unhealthy behaviors, due to a lack of time (i.e. overeating, skipping meals, eating unhealthy foods) ○​ disrupted/insufficient sleep ○​ Poor stress management (watching tv, for example) and poor stress prevention ○​ Degrading social relationships; poor social support ○​ Caregivers are more likely to believe that their stress is having a negative impact on their physical health ​ The economic burden ○​ There are several forms of economic costs which result from caregiving ​ Extra expenses needed, postponed education, declined work promotion, missed days of work, reduced hours of work (receiving overall less pay) ​ All of the above economic costs are higher in prevalence for women caregivers than for men caregivers ​ Health costs of caregiving: higher levels of depression and physical health problems compared to non-caregivers ○​ Abnormalities found in measures of endocrine and immune system function (cortisol) across caregivers, compared to non-caregivers ○​ Major depressive disorder, all leading causes of death → higher among caregivers ○​ Spouse caregivers who report strain → at risk for premature death ○​ Caregivers do have more knowledge about healthcare; navigating the healthcare system - leading to them living longer than non-caregivers  ​ Caregivers may also be more resilient → leading perspective on why caregivers live longer ​ Benefits of caregiving: despite health costs, overwhelming majority of caregivers consider it a positive experience ○​ Believe that they are providing the best care possible to their loved one ○​ Caregiving allows patient and caregiver to stay connected and become closer ○​ Rewarding caregiver with a sense of accomplishment, allows them to give back to someone who has cared for them (i.e. daughter caregiving for her aging mother) ○​ Provides caregivers with a sense of meaning and purpose ○​ Passing on a tradition of care in the family ○​ Learning new skills (medical knowledge, medical skills, interpersonal skills, etc) ​ The future of caregiving: based on data, it is projected that: ○​ 120% more older adults using home care support ○​ 30% fewer close family members, who will be available to provide unpaid care ○​ Family members (unpaid caregivers) will need to increase their efforts by 40% in order to keep up with care needs ○​ Overall, there will be an increase in caregiving needs and demand for caregivers will be higher Managing Terminal Illness: since mortality is the main concern for patients in the first few months of being diagnosed with a seriously life-threatening illness ​ High mortality illness: despite its name, it doesn’t mean that a typical patient will die in a few weeks of months ○​ Many cancer patients do survive for 10 or 20 years before the disease takes their lives, and others are totally cured (remission) ○​ However - no one can be sure what the course of an individual’s disease will be ○​ Individuals and their families must adapt to the disease uncertainty, which can be a major source of stress in terminal illness ○​ In different cases, individuals may be given a terminal diagnosis, where they are told they only have weeks of months to live ​ Denial in terminal illness ○​ Denial is common in terminal illness - it can pose significant challenges for the patient and their family ​ Some cases: denial and be extreme and persistent - maladaptive ○​ Many patients also do hope that they will be cured (or that they will undergo a miraculous recovery), which can lead them to choose aggressive care, even if it is futile (Sinhall et al., 2018) ​ Denial and acceptance: ○​ Evidence indicates that denial is most common early on in the diagnosis, and acceptance is most common closer to death (Kalish, 1985) ​ Acceptance in terminal illness ○​ Acceptance is important for both patients and their loved ones ○​ Acceptance looks different for both parties: ​ Compared to the person dying (the patient with the terminal diagnosis), death acceptance might look differently for the survivor: ​ Death acceptance might lead them to be less resistant to the idea of they themselves dying in the future