Living with chronic illness

Living with chronic illness
Assist. Prof. Merve Topcu PSY 411 Health Psychology Department of Psychology Çankaya University , Fall

Chronic diseases cause 7 in 10 deaths each year in the United States
Almost half of adults live with at least one chronic illness (Centers for Disease Control and Prevention [CDC], 2009) Children, with 10% to 15%, have some chronic physical health problem (Bramlett & Blumberg, 2008)

The Impact of Chronic Disease
Chronic disease places an enormous physical and emotional burden on a patient and patient’s family Some theorists describe the diagnosis of a chronic illness as a crisis (Moos & Schaefer, 1984) Adjustment seems to be a dynamic process influenced by many factors the characteristics of the disease rapidity of progress characteristics of the individual Dispositional optimism; and characteristics of the person’s social environment Social support (Parker, Schaller, & Hansmann, 2003)

Impact on the Patient dealing with the symptoms of the disease managing the stresses of treatment living as normal a life as possible facing the possibility of death The psychological functioning appears to matter more than physical functioning in determining the quality of life of chronic disease patients The important role of adaptation and coping active coping strategies tend to produce better results than avoidant strategies when events are uncontrollable, avoidance coping may be effective in easing negative emotions; when events are controllable, this strategy would be a very poor choice. Positive expectancies and even unrealistic optimism were advantages in coping with chronic disease

Impact on the Patient (cont’d) sick people begin to feel like “nonpersons” and to experience loss of personal control and threats to self-esteem health care system Rights & priviledges relationships with health care providers Psychological interventions and support groups Cognitive- behavioral interventions provide effective assistance in helping people cope with chronic diseases

Impact on the Patient (cont’d) the diagnosis of a chronic disease changes self-perception Chronic illness and treatment force many patients to reevaluate their lives, relationships, and body image. Being diagnosed with a chronic illness represents a loss Grieving Finding meaning in the experience of loss is more extensive than grieving Psychological growth Reconstruct the meaning of their lives in positive ways

Impact on the Family Families see the person’s loss of abilities and sometimes the sense of self Interventions that emphasize communication and interactions—especially those affecting health—provide greater benefits for patients than interventions with other components (Martire & Schulz, 2007) “Invisible” support being the obvious recipient of assistance makes that support stressful as well as helpful Children experience severe chronic conditions & limit mobility and activity Parents and siblings try to “normalize” family life while coping with therapy for the sick child

Impact on the Family (cont’d) Siblings face challenges in adjusting to the illness of a family member tending to notice the differences between their families and “normal” families feeling some combination of sympathy for and resentment of their sick sibling For adults, the changes that come with illness can alter their relationships and redefine their identity, but for children who are sick, illness can be even more distressing and disruptive leading to isolation, depression, and distress Younger children may have difficulty understanding the nature of their disease A child who is ill requires a great deal of emotional support, most of which is supplied by mothers. have little emotional energy left for being couple Fathers tend to cope by concealing their distress and through avoidance, which is seldom an effective coping strategy

Impact on the Family (cont’d) put the disease into the background and focus on the ways in which the sick child is similar to other children and other family members meet sick children’s needs without reinforcing their anxiety and depression

Living With Alzheimer’s Disease A degenerative disease of the brain Cognitive impairment and memory loss Agitation and irritability, sleep difficulties, delusions such as suspiciousness and paranoia, inappropriate sexual behavior, and hallucinations The disease can be diagnosed definitively only through autopsy brain imaging technology is capable of diagnosing Alzheimer’s disease with close to 90% accuracy The biggest risk factor for Alzheimer’s disease is age by age 85, almost 50% of individuals exhibit signs of Alzheimer’s disease Early-onset version occurs before age 60 Rare & due to genetic defect (chromosomes 1, 14, and 21) Late-onset version occurs after age 60

Living With Alzheimer’s Disease (cont’d) Decreased physical activity Fat intake during middle adulthood Inflammation Type 2 diabetes Stroke Injury Genetic factors increases the susceptibility

Living With Alzheimer’s Disease (cont’d) Cognitive activity Low levels of alcohol consumption Regular doses of nonsteroidal anti-inflammatory drugs (NSAIDs) healthy lifestyle are protective

Living With Alzheimer’s Disease (cont’d) The most common psychiatric problem among Alzheimer’s patients is depression Forgetting, paranoa & agression The burden of caregiving No cure available the primary focus of treatment is the use of drugs to slow its progress delaying the progression of cognitive deficits neuroleptic drugs for reducing agitation and aggression Behavioral approaches Music therapy Caregivers can manage behavior problems of Alzheimer’s patients through improvements in communication and modification of the environment to help decrease confusion and manage problem behaviors E.g., Alzheimer çorabı

Diabetes The Physiology of Diabetes! Glucagon & insulin Stimulation or decrease of glucose in the blood Diabetes mellitus is a disorder caused by insulin deficiency Excessive sugar accumulates in the blood & appears in abnormally high levels in the urine Might lead coma &/or death The two types of diabetes mellitus Insulin-dependent diabetes mellitus (IDDM) Non-insulin-dependent diabetes mellitus (NIDDM) (adult-onset diabetes) Gestational diabetes develops in some women during pregnancy

Diabetes (cont’d) daily monitoring of blood sugar levels Relatively strict compliance with both medical and lifestyle regimens to regulate blood sugar Damage to the blood vessels, leaving diabetics prone to cardiovascular disease Diabetics are twice as likely as other people to have hypertension and to develop heart disease damage to the retina, leaving diabetics at risk for blindness diabetics are 17 times as likely to go blind as nondiabetics kidney diseases, leaving diabetics prone to renal failure Diabetics, compared with nondiabetics, have double the risk of cancer of the pancreas

Diabetes (cont’d) the management of the disorder careful restrictions in diet weight loss and a healthy diet schedule of oral medication or insulin injections recommendations for regular exercise must test their blood sugar levels at least once (and possibly several times) a day By drawing a blood sample and using the testing equipment correctly finger-prick testing

Diabetes (cont’d) Stress may play two roles in diabetes as a possible cause of diabetes as a factor in the regulation of blood sugar in diabetics Having a stressprone personality & experiencing stressful events both predict poorer metabolic control Depression Negative emotions Poor qualiy of social support Inaccurate beliefs Decreased physical activity are risk factors

Diabetes (cont’d) Supportive text-messaging interventions Coping behaviour & locus of control are essential Diabetes education Exercise Medication regimen Interventions focusing self-control & self-management Hard to adhere to the regimen & treatment plan

Asthma a chronic inflammatory disease causes constriction of the bronchial tubes preventing air from passing freely wheeze, cough, and have trouble breathing can be fatal The cause of asthma is not understood The diathesis–stress model the traditional view that asthma is an allergic reaction triggered by environmental allergens People with the vulnerability who are exposed to the substance to which they are sensitive develop asthma hygiene hypothesis asthma is a result of the cleanliness leaving their immune systems underprepared

Asthma (cont’d) Sedentary lifestyle and obesity staying indoors Triggers, the substances include allergens Infections of the respiratory tract Tobacco or wood smoke Irritants such as air pollutants Chemical sprays Other environmental pollution

Asthma (cont’d) Similarities (and similar problems) to managing diabetes Minimizing attacks is the primary goal of managing asthma Daily attention to symptoms and status improves the chances of avoiding attacks, and behaviors are critical. Anti-inflammatory corticosteroid as medication unpleasant side effects, such as weight gain and lack of energy Bronchodilator to inhale medication Relying on emergency rooms  Behavioral interventions

HIV & AIDS AIDS is the result of exposure to a contagious virus, the human immunodeficiency virus (HIV) AIDS is a disorder in which the immune system loses its effectiveness The body defenseless against bacterial, viral, fungal, parasitic, cancerous, and other opportunistic diseases. The danger from AIDS comes from the opportunistic infections that start when the immune system no longer functions effectively.

HIV & AIDS (cont’d) The first confirmed case of AIDS appeared in the Congo in 1959 African Americans are the largest segment of the U.S. population with HIV. Risk increase due to their risky behaviors, lack of information about HIV, and lack of power to protect themselves from unsafe sex Increased survival time is a result of more effective drug therapies, early detection, and lifestyle changes.

HIV & AIDS (cont’d) HIV progresses over a decade or more from infection to AIDS, but the progression varies. Symptoms consisting of fever, sore throat, skin rash, headache, and other symptoms that resemble the flu Infected individuals may remain unaware of their HIV status Early symptomatic HIV disease occurs when a person’s CD4þ T-lymphocyte cell count drops and the person’s immune system becomes less able to fight infections. Weight loss, persistent diarrhea, white spots in the mouth, painful skin rash, fever, and persistent fatigue The HIV virus damages or kills the part of the immune system that fights viral infections, leaving no way for the body to fight HIV People are subject to lung, gastrointestinal, nervous system, liver, bone, and brain damage from infections Greater weight loss, general fatigue, fever, shortness of breath, dry cough, purplish bumps on the skin, and AIDS-related dementia.

HIV & AIDS (cont’d) The transmission of HIV person to person during sex, from direct contact with blood or blood products, and from mother to child during pregnancy, birth, or breastfeeding Contact w/ the semen & blood is more risk than w/ saliva, urine, or tears Causes of the four epidemics Male–male sexual contact is still the leading source of HIV infection in the United States Sharing of unsterilized needles heterosexual contact male-to-female transmission is 8 times more likely than female-to-male transmission Optimistic bias Trust & positive perception of the partner

HIV & AIDS (cont’d) The transmission of HIV person to person during sex, from direct contact with blood or blood products, and from mother to child during pregnancy, birth, or breastfeeding Contact w/ the semen & blood is more risk than w/ saliva, urine, or tears Causes of the four epidemics Male–male sexual contact is still the leading source of HIV infection in the United States Sharing of unsterilized needles heterosexual contact male-to-female transmission is 8 times more likely than female-to-male transmission Optimistic bias Trust & positive perception of the partner Birth process & breastfeeding Children infected with HIV during the birth process suffer a variety of developmental disabilities, including intellectual and academic impairment, psychomotor dysfunction, and emotional and behavioral difficulties Early prenatal care can reduce the risk of transmission from mother to child to about 1%.

HIV & AIDS (cont’d) Primary & secondary interventions Primary prevention includes changing behavior to decrease HIV transmission Secondary prevention includes helping people who are HIV positive to live with the infection, Counseling people about HIV testing Helping patients deal with social and interpersonal aspects of the disease Helping patients adhere to their complex treatment program. Encouraging protective measures Health care providers should adhere to a set of standard protective measures. E.g., Wear protective gloves Limiting the number of sex partners, using condoms, and avoiding shared needles optimistic beliefs about their risk & paternalistic cultures increase the risk

HIV & AIDS (cont’d) Learning of HIV-positive status is a traumatic event that can lead to anxiety, depression, anger, and distress. Emotional distress predicts a variety of indicators of HIV disease progression lower levels of CD4þ cells AIDS symptoms & diagnosis Mortality due to AIDS Problem-focused coping styles Social & professional support Personalized intervention programs are more effective but the more complex, the more difficult people adhere the regimen Cognitive behavioral and stress management Antiretroviral treatment Finding meaning in the experience and developing the potential for growth and positive experiences

Facing death Life expectancy, about 85 years old “the good death” physical comfort, Social support, Appropriate medical care Attempts to minimize psychological distress for the dying person and the family Diseases are often fatal, but death is not sudden Giving people and their families an opportunity to adjust

Facing death (cont’d) Kübler-Ross’s stages of grief Denial Anger Bargaining Depression Acceptance Exhibit a range of negative reactions, but they may also experience positive responses oriented around growth and finding meaning in their situation.

Facing death (cont’d) The dying role an extension of the sick role includes certain privileges and responsibilities and can take many forms, both healthy and unhealthy Three key elements are involved: Practical people need to arrange at the end of their lives, such as arranging financial matters and making plans for medical care as the disease progresses. Relational reconciling the dying role with other roles, such as caregiver, spouse, and parent. Personal “finishing one’s life story” reexamine their life while thinking about its end and to derive new meaning

Facing death (cont’d) The dying role (cont’d) Palliative care Medical care is so oriented toward cures that accepting death may be difficult for medical practitioners. Grief Loss and grief Kübler-Ross’s stages are not seen every people in bereavement Four different profiles of responses Resiliency, characterized by stable levels of wellbeing from before a loss to 4 years after a loss of a loved one. Acute-recovery, characterized by a drop in well-being at the time of loss, followed by a graduate return to normal. Chronic low levels of well-being that were relatively unaffected by bereavement. Improvement, with levels of well-being that increased in the years following the death of a loved one

Facing death (cont’d). Grief (cont’d) Bereavement Includes negative emotions having difficulty accepting such emotions as normal Recovering, which implies that these individuals will go back to “normal” and that their grief reactions signal psychological problems. Posttraumatic growth (Tedeschi & Calhoun)

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Living with chronic illness

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