Chronic illnesses are those incurable conditions that are not contagious, but have multiple risk factors and often involve extended periods of decline resulting in increasing functional impairment. Examples of chronic illnesses include hypertension, asthma, diabetes, and multiple sclerosis. Living with a chronic illness presents many challenges, not only for the person with the illness, but also for family members who must adapt to the changing life circumstances that often accompany ongoing health concerns. Evidence suggests that the quality of life of persons living with chronic conditions is mediated by behavioral and social mechanisms. Beginning with diagnosis, counselors can play a very important role in assisting patients and families with adjustment to chronic illness, assessing quality-of-life issues related to the illness, and developing interventions to help clients learn new skills and ways of coping with challenging situations. Counselors can also help physicians and the healthcare team to understand the multidimensional psychosocial needs of patients and families.
The diagnosis of a chronic illness can result in both immediate and long-term psychological challenges. Diagnostic tests and ongoing treatments can be physically painful and emotionally stressful for both patients and families. Disbelief, denial, anger, and depression are common reactions to a diagnosis of chronic illness. In many cases these are understandable responses to the situation. However, patients and families may need assistance to look beyond these responses in order to adopt new ways of coping and more realistic goals regarding their lives and the future. For example, denial may be helpful in assisting patients and families to get past the initial crisis point of diagnosis. However, denial has sometimes been associated with an individual’s resistance to following a medical regimen or medical advice, which can lead to negative health consequences. In general, in order to provide the most effective services, it is important for counselors to have a basic understanding of the nature of the illness, the multiple demands of the procedures involved in diagnosing and treating the illness, the potentially ongoing aspects of medical care, and the prognosis of the illness.
Chronic Illness in Adults
Once diagnosed, adults are confronted with the process of adjustment to living with a chronic illness. This process is often ongoing, depending on the nature and course of the specific illness. Adjustment is complex, often involving emotional, cognitive, behavioral, physical, and social components. Emotional adjustment can include dealing with feelings of helplessness, being overwhelmed, and fear of the future. Cognitive components may include difficulty with concentration, hypervigilant appraisals of the illness and one’s condition, and decline in short-term memory functioning. Behavioral concerns include role fulfillment and role change in an individual’s life and meeting the demands of the illness (e.g., doctor visits, taking medications as prescribed). Physical components of illness may include loss of mobility, physical adaptations needed at home or work, or not being able to drive. Finally, social concerns often focus on personal relationships, social support, the stigma of chronic illness, and social comparisons with others. The combined effects of these adjustments and changes brought on by chronic illness represent an enormous challenge to the patient at a time when most personal resources are very low. Therefore, assistance from a counselor is extremely important in order to support the individual in this process of adjustment.
Chronic Illness in Children and Adolescents
Many children and adolescents experience chronic health conditions. While all children have times of sickness and health in their young lives, children with chronic illnesses have ongoing conditions that affect their normal activities and that may require extensive medical care, including hospitalizations or home health care. Examples of chronic illnesses include asthma (the most common condition), diabetes, cerebral palsy, cancer, epilepsy, spina bifida, AIDS, congenital heart problems, and sickle cell anemia.
Young people with chronic health conditions often face a wide range of problems related to their disease. These can include feeling “different” from other children, frequent doctor and hospital visits, having to endure painful or difficult medical treatments, and hospital stays that can be frightening or lonely. A young person’s reaction to both the diagnosis and the disease will be heavily affected by his or her personality, the specific illness, his or her developmental stage, and perceived support from family and medical personnel. Counselors can help children and their families cope with illness using behavioral techniques such as relaxation, biofeedback, and positive practice and by modeling healthy behaviors for children. Counselors can also help children cope with their illnesses by providing them with a forum in which they can speak openly about their disease and their experiences. Due to the chronic nature of these childhood diseases, depression is often a side effect in children, who may feel that they will never be “normal,” or like other children. Counselors should be aware of the signs of depression in children and should assess for these regularly. Play therapy and expressive therapies, such as art, music, and drama therapy, can be helpful in allowing children to explore their emotions and process experiences related to their condition.
Patients do not experience chronic illnesses alone. Families and significant others typically go through a number of life-altering new challenges and stressors related to the illness over time. For example, the presence of chronic illness often results in increasing financial, time, and emotional burdens on patients and their families. Many individuals who experience chronic illness have a loss of income due to a decrease in days at work or the loss of a job, and at the same time they have an increase in expenses related to medical bills, therapies, and medications. The primary caregiver (typically the spouse, parent, or adult child) of the ill person may need to decide whether to give up working in order to care for the patient. Balancing the new role of caregiver with possible concurrent roles of parent, breadwinner, head of household, etc., is a daunting challenge for many individuals.
Family relationships and perceived social support can be important contributors to the effective management of chronic illness, reducing some of the stressful impacts of the disease. Significant positive relationships may also affect the ability of the patient to develop and implement coping skills, follow medical instructions, recover from surgery or other procedures, and perform in-home tasks and adapted vocational roles. Some patients with chronic illnesses report closer relationships with family and friends as a result of their diagnosis and illness. Patients who perceive more social support are typically better able to cope with the effects of their illnesses than patients who report less perceived support.
On the other hand, the effect that chronic illness can have on interpersonal relationships can be very difficult for some patients and families. For example, families often struggle to understand what the patient is experiencing and whether he or she is doing too much or too little to cope with the situation. Unrealistic expectations related to how the patient “should” cope with the illness can cause a number of difficulties. Families often report a sense of helplessness and fatigue, especially when trying to adapt to new roles necessitated by changes related to the chronic condition. In an effort to provide support, families may offer advice that is not always helpful or welcomed by the patient. These interactions related to changes accompanying the chronic illness often result in stress and frustration, which may lead to increased depression and anxiety. The counselor can help patients and families learn to listen and communicate more effectively with one another. These skills, in turn, may strengthen bonds of social support, which contribute to better adjustment and quality of life.
Awareness of special characteristics of patients’ backgrounds and environments is important in understanding individual and family responses to illness and treatment. Counselors may want to explore the cultural heritage and religious values of clients in order to respect and incorporate some of these key strengths and resources in their work with patients. For example, we all have health schemas related to the cause or reason for illness (e.g., we may believe the cause is natural or supernatural or that the illness is a punishment for wrongdoing). Exploration of these beliefs can provide valuable information about patients’ views of themselves, the world, and potential healthcare interventions. Some cultures are more interdependent than others and value a different style of decision making than other cultures that value independence. Different groups may view medical treatments or death in very different ways, and understanding these differences can be extremely helpful in dealing with patients and families who are facing life crises or decisions with long-term consequences (e.g., having a feeding tube inserted that extends the patient’s life but does not lead to better quality of life over time). Some cultures clearly value extensive familial-social support networks, which can be a great asset to individuals or families facing chronic illness. Other cultural groups, because of language and background, may lack competence in verbal expression or use cultural idioms of distress unfamiliar to the counselor. In many cultures, there is a stigma related to seeking help outside the family. As in other areas of counseling, it is critical to examine one’s cultural competence when working with clients and to be aware of one’s own limitations of background and experience. Consultation with colleagues is often helpful.
Performing assessments can be useful when working with individuals who are chronically ill and their families. For example, assessments can be used to gain information related to patients’ cognitive ability to adhere to medication and treatment requirements, their competency to make medical decisions, and their overall psychological capacity to handle new challenges. Assessments can also be performed to help with treatment planning.
There are a variety of ways to perform assessments, including clinical interviews, formal paper-and-pencil measures, and basic neuropsychological screening. Relevant areas to address in the clinical interview include personal and environmental strengths, perceived barriers to adjustment, and personal meaning-making regarding the illness. Family members, especially the primary caregiver, should also be interviewed and included in the assessment. Interviews may be conducted separately for caregivers depending on the type of information that is needed. Formal assessment instruments may cover areas such as depression, anxiety, quality of life, and caregiver burden. Neuropsychological screening can be suggested if there is a question of diminished cognitive ability. One caution relative to assessment is that a variety of symptoms overlap the domains of physical illness and emotional distress. For example, aspects of some illnesses include change in appetite or sleep patterns, loss of energy, or difficulty in concentration, which are also symptoms of depression. It is important to remember that the purpose of all assessment is to inform the counselor about how best to support and promote the adjustment and care of patients and families.
Interviews: Personal Meaning of Illness
Research has shown that patients’ ascribed meanings can be used to screen for maladaptive coping and to predict health outcomes and quality of life. For example, developing a chronic illness may cause a shift in personal life goals or worldview. After an illness diagnosis, patients’ perceived meanings of their own lives can be drastically altered. For example, many individuals pay more attention to issues of spirituality and faith than they did prior to diagnosis. Patients may also become more introspective and reflective.
With chronic illness, major transformations sometimes occur in patients’ lives as they struggle to make sense of the diagnosis. Meaning-making is an ongoing process of evaluation, exploration, and weighing of values that takes place when people are faced with life circumstances that in many ways are beyond their control. The search for meaning is not only an intensely personal response to chronic illness, but it can also be viewed as an interactional process involving family or significant others. Existential questions such as “Who am I now in relation to my family or to this person I love so much?” or “What will my identity be now that I can no longer work and provide for my family?” may arise. It is important for the counselor to attempt to understand the meaning of illness for both the patient and the family, because the very process of trying to understand itself helps to foster cooperation, coping, adjustment, adherence, and empowerment.
Interviews: Family Members and Caregivers
Because of the challenges that family members experience as a result of chronic illness, it is important to consider the strengths and resources available to family members and more specifically to the primary caregiver. Learning about the needs and potential range of difficulties associated with the illness from each person’s perspective also helps the counselor assist family members in finding positive ways to cope with the situation.
Formal Measures: Emotional Changes
It is often helpful to have a baseline measure of the patient’s emotional functioning. There are a number of standard paper-and-pencil measures that can provide information about a variety of mood states, including depression, anxiety, stress, intrusiveness of illness, hope, and loneliness. This information can assist the counselor in setting priorities for treatment planning. It is important to remember that changes in mood may be a normal reactive response to the diagnosis and circumstances of illness. However, mood change can also be a manifestation of some aspect of the disease itself. It is also possible that some of these symptoms may have been present before the diagnosis of chronic illness and can represent comorbid conditions. The counselor will want to consider these alternative explanations and to explore the source of the mood disturbance with the patient and the family or significant others. Depending on the severity of the condition, this discussion may be followed by a suggestion that the patient or family consider seeking consultation with the primary care physician regarding these concerns.
Formal Measures: Quality of Life
Quality of life (QOL) is often defined as an overall state of physical, emotional, and social well-being. The literature in this area often includes other facets of quality of life such as role functioning. Physical functioning may be assessed by using a checklist of activities of daily living (ADLs) or by determining the patient’s ability to perform everyday tasks. Emotional functioning includes assessment of variables such as those described in the previous section. Social functioning is often assessed by measuring actual or perceived social support. Role functioning is assessed in terms of the patient’s ability to perform functions related to work, parenting, or maintaining a career.
Assessment tools have been developed that attempt to assess the physical, psychological, and social changes that occur as a result of chronic illness. These instruments have also been created in order to determine if specific interventions or treatments improve not only physical symptoms as assessed by medical staff but QOL as reported by the patient. Quality of life is based on the patient’s perception of how the illness affects his or her day-to-day life. Thus, these tools are typically self-report instruments that provide the counselor with an understanding of how the patient views his or her life and functioning in various areas.
There are two primary approaches to measuring quality of life. First, global questionnaires provide a broad, overall view of the patient’s functioning. Such questionnaires often generate useful health profiles. The second approach consists of instruments that are more disease-specific and that focus on problems associated with single disease states, patient groups, or areas of function. These approaches are not mutually exclusive and each has specific advantages.
In order to help individuals with chronic conditions deal effectively with adjustment to illness, counselors often employ a variety of interventions that have been shown to be useful in decreasing anxiety, fostering social support, and reducing symptom severity. Behavioral and cognitive-behavioral techniques are the primary interventions used in health psychology and medical settings. These approaches are often focused on symptoms, identify factors related to a particular problem, and attempt to modify the factors that cause or maintain the problem. These strategies have been found to be effective in enhancing an individual’s compliance with medication and other health routines, helping with symptom control (e.g., pain management), and increasing a sense of self-efficacy, or an individual’s sense of control over his or her own life and disease. Some of the specific techniques used in these approaches include relaxation training, biofeedback, differential attention, goal setting, and positive practice. Because stress, anxiety, and pain are often associated with illness and medical interventions such as surgery or chemotherapy, the use of relaxation techniques that include deep breathing and decrease arousal are often helpful to the patient. Cue-controlled and differential relaxation are useful in the generalization of the relaxation response to settings outside of treatment. These techniques are often combined with other interventions, such as distraction, comforting self-talk, imagery, and systematic desensitization to provide the patient with a repertoire of helpful skills.
Stress management is an intervention of particular importance, as it can help patients deal with chronic, ongoing conditions as well as crisis situations. Knowing how to manage stress can also help prevent the onset of headaches, muscle tension, and the development of other chronic diseases such as diabetes, pulmonary dysfunction, and rheumatoid arthritis. Many stress management programs are disease-specific and present a series of patient education modules offered over a period of weeks in a group format. Typical modules include an explanation of how stress affects the body, challenges patients face, problem solving related to those challenges, presentation and practice of relaxation techniques, and possible treatment options. Homework assignments, involvement of family members, and discussion of misconceptions about the illness are often incorporated.
Two standardized courses have been developed to help patients manage the symptoms and complications of their conditions. The Arthritis Self-Help Course and the Chronic Disease Self-Management Course (both conceived by Kate Lorig at Stanford University) are 7-week courses that are offered to groups of eight to ten patients. A variety of topics are addressed, including goal setting, problem solving, and exercise. Participants are paired with one another and asked to check in with their partners on at least a weekly basis. Reports of the extremely positive and long-lasting outcomes of these courses have noted that the greatest predictor of improvement is increased self-efficacy. Altruism, or the opportunity to help others in the group with ideas, suggestions, or support, has also been noted as important to participants. Training is available for counselors to become certified to offer these courses.
Support groups can help patients deal with aspects of the disease, the trauma it has caused, and its future implications in a way that promotes a sense of personal coherence, coping, and adaptation. Support groups may also help chronic illness patients engage in a reappraisal of their experience, focus on meaning-making, and integrate their experience into their personal narrative. By joining a support group, individuals often establish new connections with others who may be having similar experiences. Group participants typically give and receive social support, which appears to buffer stress and to benefit persons with chronic illness.
Support groups for family members and caregivers can also be very beneficial. Such groups allow individuals a safe place to express the concerns and frustrations inherent in their position. Others who care for persons with chronic illnesses can commiserate with the difficulties that are faced and offer suggestions about how to approach specific problems. Laughter over some of the humorous circumstances that occur that “outsiders” wouldn’t understand can be very therapeutic.
Additional Roles of the Counselor
In addition to assisting the patient and family through emotional aspects of adjustment to chronic illness, the counselor may be called upon to help clients advocate for themselves with physicians, the medical system, insurance companies, or others involved in the patient’s care and treatment. It is helpful to know enough about the healthcare system to support clients as they seek answers to the myriad questions that arise as they face new dilemmas and work toward managing challenging life circumstances. The counselor may also work as a liaison between medical personnel and the patient and family, supporting and interpreting the communication so that everyone clearly understands explanations, instructions, and the implications of treatment choices and decisions.
In the future, there will be increased need for counselors who specialize in areas such as genetic counseling. With the completion of the Human Genome Project, there is expanding development of genetic testing for a variety of inherited diseases and conditions. Undoubtedly, with more advances in research, there will be broader uses of genetic testing for growing segments of the population.
The future will most likely bring the expansion of health promotion programs. In order to contain healthcare costs, prevention programs targeting health behaviors such as weight loss, exercise, and smoking cessation will become more widespread. Counselors with special expertise in psychoeducational presentations and group work will be needed to deliver these interventions.
Finally, increasing access to computers and familiarity with technology will provide patients and families with new avenues of information and support. Counselors will want to be aware of resources that are available online to clients in rural areas or those who are not able to physically access other opportunities or interventions.
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