Chapter 13: Serious and Disabling Chronic Illness

What are initial reactions to having a chronic condition?

- Shock - being stunned or bewildered and behaving in an automatic and detached fashion. May last for a short while or weeks.

- Then, after a period of using emotion-focused strategies, such as denial, reality begins to intrude; the symptoms remain or get worse, additional diagnoses confirm the original one, and it becomes clear that adjustments need to be made

Crisis theory

Describes factors that influence how people adjust. This depends on the coping process, which depends on three contributing influences: illness-related factors, background and personal factors, and physical and social environmental factors.

Illness-related factors in crisis theory

The greater the threat patients perceive for how disabling, disfiguring, painful or life-threatening the health problem is, the more difficulty they are likely to have coping with their conditions. Patients also have difficulty coping with illness-related factors that involve annoying or embarassing changes in bodily functioning or that draw attention to their conditions.

Background and Personal Factors in crisis theory

People who cope well with chronic health problems tend to have hardy or resilient personalities that allow them to see a good side or find meaning in difficult situations. The ways individuals cope with chronic health problems also depend on many other background and personal factors, such as their age, gender, social class, philosophical or religious commitments, emotional maturity, and self‐esteem.

- men are more likely than women to have difficulty with health problems that restrict vigour or physical abilities

- young children are not likely to understand the nature of their illnesses, the treatment regimen and long term implications

- adolescents can understand information, but their need to be liked and feel accepted by their peers can lead to difficulties in coping

- self-blame: people who believe they are personally responsible for developing a chronic illness and its symptoms tend to cope poorly

Physical and social environmental factors and crisis theory

- The physical aspects of a hospital environ- ment, for instance, are usually very dull and confining for patients, thereby depressing their general morale and mood. Home environment may not be much better

- The presence of social support generally helps patients and their families and friends cope. The degree to which each member of the social system adjusts in constructive ways to the illness affects the adjustment of the others.

- Patients may join social support groups. These groups can provide informational and emotional support.

What are two types of adaptive tasks in the coping process that need to be addressed with people who are ill?

1. Tasks related to the illness or treatment, which involve learning to (1) cope with the symptoms or disability the health problem causes, (2) adjust to the hospital environ- ment and medical procedures or regimens needed to treat the problem, and (3) develop and maintain good relationships with their practitioners.

2. Tasks related to general psychosocial functioning, which involve striving to (1) control negative feelings and retain a positive outlook for the future, (2) maintain a satisfactory self‐image and sense of competence, (3) preserve good relationships with family and friends, and (4) prepare for an uncertain future.

What coping skills do patients and their families employ to deal with these adaptive tasks?

- Denying or minimizing the seriousness of the situation. As we have seen, this approach can be beneficial in the early phases of adjusting to a health problem. Patients may benefit from this approach by using it selectively to put aside their emotions temporarily, thereby saving them from feeling overwhelmed and giving them time to organize other personal coping resources.

- Seeking information about the health problem and treatment procedures. ␣␣ Learning to provide one's own medical care such as self‐administering insulin shots. With this approach, patients gain a sense of

control and personal effectiveness with respect to their conditions.

- Setting concrete, limited goals such as in exercising or in going to shows or social gatherings, and maintaining regular routines as well as possible. By doing this, patients and their families have things to look forward to and opportunities to achieve goals they consider meaningful.

- Recruiting instrumental and emotional support from family, friends, and practitioners by expressing needs and feelings.

- Considering possible future events and stressful circumstances in order to know what lies ahead and to be prepared for unexpected

difficulties.

- Gaining a manageable perspective on the health problem and its treatment by finding a long‐term "purpose" or "meaning" for the experience. Patients often do this by applying religious beliefs or by recognizing how they have been changed in positive ways by the experience.

Adaptation

Refers to the process of making changes in order to adjust constructively to life's circumstances.

Quality of life

The degree of excellence people appraise their lives to contain. People around the world appraise excellence with similar criteria, such as performing daily activities, energy or discomfort, positive and negative feelings, personal control, interpersonal relations, pleasant activities, per- sonal and intellectual growth, and material possessions.

Asthma

A respiratory disorder involving episodes of impaired breathing when the airways become inflamed and obstructed.

Describe an asthma episode.

The immune sys- tem is stimulated to react in an allergic manner, produc- ing antibodies that cause the bronchial tubes and other affected body tissues to release a chemical called hista- mine. This chemical causes irritation to those tissues. In an asthma attack, these events cause the bronchial tubes to become obstructed as their smooth muscles become inflamed, develop spasms, and produce mucus.

What cause asthma attacks to happen?

Attacks usually occur in the presence of certain conditions, called triggers (Evans, 1990). Asthma triggers can include personal factors, such as having a respiratory infection or feelings of anger or anxiety; environmental conditions, such as air pollution, pollen, or cold temperature; and physical activities, such as strenuous exercise. The main triggers for many asthmatics are allergens—substances, such as pollens or moulds, that are known to cause allergic reaction.

What causes the condition of asthma to develop?

Heredity clearly plays a role. Research has also found evidence linking genetic factors to the severity of the condition and some of the specific triggers that are involved. Other important factors include the person's history of respiratory infection and exposure to cigarette smoke. Individuals who contract serious viral infections in infancy or early childhood are more likely to develop asthma than individuals who do not. Children are more likely to develop asthma if their parents smoke.

What are the medical regimens for asthma?

1. avoiding triggers of attacks

2. bronchodilators to treat acute attacks

3. anti-inflammatories to prevent attacks to reduce sensitivity and inflammation of the airways

4. exercise

How do psychosocial factors affect asthma?

- stress can also produce or aggravate asthma attacks or episodes, excitement can trigger attacks

- anxiety increases symptom perception

- catastrophizing or appeasing vague respiratory symptoms as an impending and potentially sever asthma attack can increase anxiety and symptoms of respiratory distress

- suggestion can induce asthma symptoms

- asthmatic who use adaptive strategies like acceptance, reappraisal, and distraction tend to have improved lung function

Epilepsy

A condition marked by recurrent, sudden seizures that result from electrical disturbances of the cerebral cortex.

Describe the phases of the tonic-clonic or grand mal seizures.

It begins with a very brief "tonic" phase, in which the person loses consciousness and the body is rigid. It then progresses to a longer "clonic" phase that lasts two or three minutes and includes muscle spasms and twitching. The body may then relax until the person shortly awakens. Sometimes before tonic‐clonic seizures, epileptics experience an aura, which consists of unexplained sounds, smells, or other sensations. In mild forms of seizures, the person may just stare blankly for a few seconds and show slight facial twitching.

What causes epilepsy?

Although we don't know why the neurological disorder develops, risk factors for epilepsy include a strong family history of the condition, severe head injury, and other brain disorders, such as cerebral palsy, stroke, and Alzheimer's disease.

What are the medical regimens for epilepsy?

- Anticonvulsant drugs

- In cases when medication does not control he seizures, physicians consider implanting a device that stimulates the vagal nerve or surgery if the seizures result from clear neurological defects.

How may psychosocial factors affect epilepsy?

- Some evidence suggests that emotional arousal, such as anxiety, may increase the likelihood or severity of epileptic episodes

- Their families sometimes adjust poorly to the disorder, especially if episodes are frequent and severe

Spinal cord injury

Refers to neurological damage in the spine that results in the loss of motor control, sensation, and reflexes in associated body areas. The damage may be cause by disease or an injury that compresses, tears, or severs the cord.

Describe the physical rehabilitation for spinal cord injury.

1. Training the patients to develop bladder and bowel control and on assisting them in moving parlayed limbs to maintain their range of motion.

2. Physical therapy toward maintaining and improving the function of muscles over which the person has some control. Therapy with biofeedback to "re-educate" the muscles in these areas.

3. Therapy to include activities of daily living: performing self-care activities independently and using devices to compensate for permanent physical losses.

Type 1 diabetes

Typically develops in childhood or adolescence and accounts for 5 to 10% of cases. In type 1, autoimmune processes have destroyed cells of the pancreas that normally produce insulin, a hormone that enables body cells to use glucose. They require insulin injection to prevent acute and very serious complications.

Type 2 diabetes

Very prevalent, accounting for the vast majority of diabetes cases. The pancreas produces at least some insulin, and treatment may not require insulin injections. Most, bot not all, people manage their glucose levels with diet and medication. Most are very overweight, and many produce substantial amounts of insulin-sometimes more than normal-but their bodies seem to "resist" the glucose-controlling action of insulin. Normal-weight type 2 patients seem to produce reduced levels of insulin.

Gestational diabetes

Occurs in approximately 2 to 4% of all pregnancies (higher rate among Aboriginal mothers). This is a temporary condition but can result in an increased risk of the mother and child developing diabetes at a later time.

Metabolic syndrome

Includes poor control of glucose and abnormal insulin sensitivity raises the risk of diabetes and coronary heart disease.

What are some issues with non adherence for diabetics?

First, because some tem- porary weight gain tends to occur when diabetics get their

glucose under control, many female patients, in an effort to control their weight, fail to take their insulin (Polonsky et al., 1994). Second, a regimen's dietary recommenda- tions may be incompatible with the food habits of patients in certain ethnic groups (Raymond & D'Eramo‐Melkus, 1993). Third, diabetes patients often feel frustrated when they "didn't cheat," but their glucose control is off tar- get for some other reason, such as being under stress. Fourth, because diabetes is not painful, patients may not feel that following the regimen closely is critical. Another is when the patient and the physician have different treatment goals.

Arthritis

Musculoskeletal disorders affecting the body's muscles, joints, and connective tissue near the joints. Causes pain, stiffness, or inflammation.

Osteoarthritis

A disease in which the joints degenerate mainly as a result of wear and tear. People's risk of developing this condition increases with age and body weight and is associated with certain occupations in which particular joints are subject to repeated heavy use.

Firbomyalgia

Produces pain and stiffness mainly in the muscles and other soft tissue.

Gout

Can affect any of the body's joints, but is most common in the big toe. In this disease, the body produces more uric acid than the kidneys can process, and the excess acid circulates in the blood and leaves crystalline deposits at the joints.

Rheumatoid arthritis

A disease that involves extreme inflammation of joint tissues and also affects the heart, blood vessels, and lungs when it reaches advanced stages. Involves an autoimmune response that attacks the tissues and bones of the joints.

Describe the progression of arthritis.

- The lubricating fluid leaks out of the joints, usually in the knees, ankles, shoulders, elbows, and wrists.

- Cartilage is destroyed and joint function is reduced.

- The conversion of organic matter into minerals for bones

decreases near the joints.

- Bone erosions take place near the joints.

- Joints become dislocated and sometimes fused, producing deformities (Anderson et al., 1985).

What are the psychosocial factors of arthritis?

- Increases one's risk of emotional distress - experience more anxiety and depression than healthy individuals

- People with severe arthritis are more likely to feel helpless and depressed than those with milder conditions.

Some engage in catastrophic or exaggerated negative thinking about the condition and its future implications

- People with prior history of depression who develop arthritis tend to cope poorly with their pain

- Sleep problems are common

What are three main findings of psychosocial factors and arthritis?

1. The subjects generally thought their practitioners had greater control over the course of the disease than they did themselves.

2. The patients who had relatively active symptoms, those who believed they could control their daily symptoms reported less mood disturbance than those who did not

3. The people who saw themselves as active partners in decisions about their medical care and treatment showed better adjustment to their illness.

What impact does the arthritis condition have on psychological status of the patient's family?

- The severity of the disease by itself has little impact

- Spouses of arthritis patients, their levels of distress or depression relate mainly to their perceptions of the quality of the marriage and of social support

- People with arthritis who receive helpful social support claims o have less pain and disability

- arthritis severity increases, spouses who perceive little social support int heir lives report more depression

- emotional health of one's spouse impacts the patient's ability to cope with the disease, affects pain experienced by the patient over time

- those who cope by expressing negative emotions a lot and perceive their spouses as reacting negatively to their pain show poorer adjustment and disease status over time than others

- when patients and their spouses hold similar or congruent perceptions of control over arthritis they report better emotional adjustment

- if the patient is willing to express emotions like compassion or guilt to a spouse who is in the role of caregiver, the spouse reports less stress-especially when the husband is the patient

Dementia

A term that refers to a progressive loss of cognitive functions that often occurs in old age.

Alzheimer's disease

A brain disorder characterized by a deterioration of attention, memory, and personality. First ones to go are attention and memory. First memory losses are generally recent events and new learning, and later distant events and well-learned information. Personality changes often emerge, with the patients becoming apathetic and withdrawn. Self-care deteriorates and behaviour problems appear.

What causes Alzheimer's disease?

Alzheimer brains contain extensive lesions, consisting of gnarled and tangled nerve and protein fibres. Evidence now indicates that genetic defects may cause these large deposits to occur. A likely gene involved in early onset of the disease has been identified.

What characteristics increase the risk of developing Alzheimer's disease?

- Low education

- Prior strokes

- No alcohol use (moderate use decreases Alzheimer risk compared with no alcohol use)

- Sedentary lifestyle

- High body weight

- Hypertension

- High cholesterol

What are the psychosocial factors and Alzheimer's disease?

- Many families either don't know or deny that the person has the disease

- Becomes very frustrating and often leads to feeling helplessness, which may account for their high rates of depression

- Caregivers have lower immune function, poorer overall health, higher stress hormones and higher mortality rates, worsen with low levels of social support and high distress from dementia-related behaviours

- The slow decline, sever dementia-related behaviour problems, and knowledge that it will only end when the patient dies generally make Alzheimer's disease more difficult

What are some types of adjustment problems in chronic illness?

- Physical—Being unable to cope with disability or pain.

- Vocational—Having difficulty revising educational and career plans or finding a new job.

- Self‐concept—Being unable to accept one's changed body image, self‐esteem, and level of achievement or

competence.

- Social—Having difficulty with losing enjoyable activities or finding new ones and coping with changed relationships with family, friends, and sexual partners.

- Emotional—Experiencing high levels of denial, anxiety, or depression.

- Compliance—Failing to adhere to the rehabilitation regimen.

What do chronically ill people and their families need help to adapt to?

- Correct information about the disease and its prognosis and treatment.

- Effective systems of social support are also important for patients' and there families' adaptation to chronic health problems

How can adherence to medical regimens be improved?

- Practitioner's communication of information about the procedures and the importance of following the treatment.

- Behavioural methods such as tailoring the regimen to make it as compatible as possible with the person's habits, using prompts and reminders, having patients keep track records of their self-care activities, and providing a system of rewards throughout the method of behavioural contracting.

- Reinforcement techniques in improving patient's performance of beneficial behaviours. Can be given, for instance, by praising the client for each measurable improvement.

- Enable patients and their families to self-manage the condition effectively, best achieved by combining information with behavioural and cognitive methods

Self-management

Programs provide information and train patients in behavioural and cognitive skills to enhance their ability to carry out their regimens, create and adapt to the new behaviours or life roles the health condition requires, and cope with their emotions. They teach problem solving skills so that individuals can deal effectively with day-to-day circumstances and decisions

How do stress management techniques - especially progressive muscles relaxation and biofeedback-help patients control psychosocial factors and the underlying body processes?

- They help diabetic patients manage their stress and blood glucose levels

- Biofeedback can also be used to increase muscle function after paralysis

- People with epilepsy can benefit from relaxation, stress management, and biofeedback

How do cognitive methods help manage chronic health problems?

They guide the individual's medical decisions and behaviours and they affect the emotional adjustment to the condition. Therapists use cognitive methods to help clients change their thought processes and feelings. Coping skill methods such as guided imagery and distraction, are helpful and often included in treating pain conditions.

Problem-solving training

A method to hel[ clients reduce the anxiety and other negative emotions they experience when they don't know how to solve many of their everyday difficulties. This approach also helps them manage their medical condition by teaching them new strategies for thinking through medical problem situations that arise and making good decisions.

Cognitive restructuring

Clients discuss incorrect thoughts and beliefs and learn ways to cope better by thinking more constructively or realistically.

Interpersonal therapies

Designed to help people change the way they interact with and perceive their social environments by gaining insights about their feelings and behaviour toward other people. This approach is especially useful in helping patients deal with their anxieties and changed self‐concepts or relationships with family and friends.

Family therapy

Typically has the family meet as a group and draws on cognitive, behavioural, and interpersonal methods to examine and change interaction patterns among family members. Family therapy also can help to uncover and resolve anxieties that develop when the family dynamics and modes of interaction change.

Collaborative or integrative care

Combines the perspectives of multiple provider. In one approach, health care providers receive training in the integration of multiple perspectives and approaches, and have regular consultation with an interdisciplinary team. Integrated care is effective in managing chronic illness and its multiple impacts, and has the benefit of lowering medical costs.