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Living with chronic illness

Pullen, Richard L. Jr. EdD, MSN, RN, CMSRN, CNE-cl

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doi: 10.1097/01.NME.0000658192.79856.4e
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Figure
Figure

Forty percent of the US population has one or more chronic diseases, according to the CDC's National Center for Health Statistics. The World Health Organization reports that the prevalence of chronic diseases is 43% globally, with 60% of all deaths attributed to these illnesses. As the birth rate exceeds the global death rate and our patients live longer, it's important to understand how major chronic diseases impact quality of life and be knowledgeable about nursing management strategies to promote health.

The impact

The terms chronic disease, chronic condition, and chronic illness are often used interchangeably. A chronic disease is a condition that lasts for more than 1 year, is multifactorial, has no definite cure, requires continuous and persistent healthcare monitoring, and limits or prevents a person from performing activities of daily living. Chronic illness is used to describe how a disease impacts a person's quality of life from a physical, psychological, and social perspective.

Examples of noncommunicable chronic diseases include:

  • pulmonary disease
  • cardiovascular disease
  • diabetes
  • stroke
  • neuromuscular disease
  • cancer (see Spotlight on cancer)
  • chronic kidney disease
  • multiple sclerosis
  • osteoarthritis
  • rheumatoid arthritis
  • lupus.

Examples of communicable chronic diseases include hepatitis B and C, HIV, and Helicobacter pylori infection.

Technologic and economical advances have enhanced the quality of life for many people globally; however, other variables have emerged as major threats to health that lead to chronic diseases, including, but not limited to, the use of tobacco, excessive consumption of alcohol, reduced physical activity, and obesity. Other conditions that can impact quality of life include depression, bipolar disorder, low back pain, chronic pain syndromes, and opioid use disorder.

Disparities in healthcare access are also major threats when people don't have insurance or they have high premiums and deductibles. Poverty is associated with an increase in morbidity, disability, and mortality. Individuals are more likely to have a chronic disease if they have a lower education level, receive substandard care, live in substandard housing, or are exposed to environmental hazards because of poverty. It's crucial to eliminate healthcare disparities related to age, gender, race, ethnicity, culture, socioeconomic status, and education as the economic impact of chronic diseases continues to rise.

Quality of life

Patients with a chronic disease may experience problems with mobility, fatigue, pain, elimination, social isolation, loneliness, depression, and more, which can negatively affect quality of life. There's a plethora of information in the literature on chronic disease management and how people cope with chronic illness. The following are examples of selected models and processes.

The THRIVE Model—therapeutic interventions, habit and routine, relational (social), individual differences, values and beliefs, and emotional factors—focuses on the ways in which individuals cope with the clinical aspects of chronic disease, such as signs and symptoms and complications, and the impact these clinical aspects have on social interaction and functioning. Living with chronic illness means that patients must learn how to adapt to pain, disability, psychological changes, and changes in personal and social relationships.

A second example is a four-step classification model for living with chronic illness:

  1. Disavowal—The person feels a lack of control and balance in his or her life, which is likely to occur with a new diagnosis or complication.
  2. False normality—The person achieves a partial life balance and control, but this may not be sustainable over time.
  3. New normal—The person has embraced a positive approach to coping with his or her disease and lives a normal life.
  4. Disruptive—The person experiences a disruption, which can be physical, mental, social, family-oriented, or financial.

Another model identifies five attributes of coping with chronic illness that are motivated by the patient's approach to positive living:

  1. Acceptance—The person is knowledgeable about his or her disease and is willing to cope with the uncertainty that the diagnosis brings.
  2. Coping—The person comes to terms with the reality of the chronic disease and develops new ways to adjust to it.
  3. Self-management—The person is proactive in his or her care.
  4. Integration—The person develops a new way of life and heightened self-awareness.
  5. Adjustment—The person experiences a transformation of self-identity; the disease becomes a part of who he or she is.
Table
Table:
Priority assessment and patient teaching for common chronic diseases
Table
Table:
Priority assessment and patient teaching for common chronic diseases (Continued)

The six-component Chronic Care Model is a structured method of caring for patients with chronic diseases in the primary care setting from an interprofessional perspective:

  1. Health system—Cultivate an organizational culture that fosters and nurtures optimal health outcomes for patients with a chronic disease.
  2. Delivery system—Provide efficient clinical care to keep patients out of crisis, including encouraging self-care by supplying available resources.
  3. Self-management support—Empower the patient to take an active role in his or her care.
  4. Decision-support—Make healthcare decisions based on evidence-based standards of practice, with support from the interprofessional team.
  5. Clinical information systems—Properly and securely store, retrieve, and analyze patient-centered data to provide efficient and timely care.
  6. Community resources—Refer patients to peer support groups and education initiatives available in the community to complement care from the interprofessional team.

Managing chronic diseases

The CDC reports that many chronic diseases are preventable or may have decreased morbidity if early detection methods, health promotion activities, and appropriate management strategies are employed. Nurses are at the forefront of the interprofessional team to evaluate health status, promote patient and community-wide education, develop health policies, and ensure healthy environments in the management of chronic disease (see Priority assessment and patient teaching for common chronic diseases). Health promotion activities that are framed around self-efficacy and compassion will help the patient achieve a personally acceptable balance between change and stability.

When caring for a patient with a chronic disease:

  • Conduct a health history interview and perform a head-to-toe assessment. Ensure that sources of suffering or other signs and symptoms are being managed. Correlate the patient's health history, physical assessment, lifestyle assessment, medication regimen, and lab and imaging data to develop a care plan.
  • Perform a functional assessment to evaluate the degree to which chronic illness is impacting the patient's life.
  • Actively listen to the patient. Encourage patients to “tell their story.” Storytelling is an effective way for patients to share their feelings. The nurse might start the conversation with statements such as, “How has chronic illness impacted your life?” and “Will you please describe ways you've coped with chronic illness?” A response by the nurse such as, “I'm so sorry, I can't imagine what you've gone through” validates the patient's unique journey and provides encouragement. Compassion and genuineness must resonate from the nurse's voice inflection, countenance, and demeanor.
  • Encourage the patient to write his or her experiences and feelings in a journal.
  • Encourage support groups and counseling.
  • Explore pain management from an interprofessional approach; pain may be physical or emotional.
  • Encourage the patient to cope with anxiety, fear, anger, and depression by talking with others, practicing mindfulness meditation, engaging in hobbies or other sources of joy, and visiting with family and friends.
  • Encourage the patient to learn more about his or her chronic illness and share experiences with others who are going through a similar situation. Patients who are proactive in their journey inspire others to be the same.

Reducing the burden

Chronic illness impacts every aspect of a patient's life. A priority goal is to help the patient achieve an optimal level of health through symptom management and taking a proactive role in his or her care. Nurses can use critical-thinking and clinical-reasoning skills, along with other members of the interprofessional team, to develop a unique care plan to eliminate, reduce, or prevent sources of suffering for our patients.

Spotlight on cancer

Because there are many types of cancer, the following are general assessment and teaching strategies.

Assessment

Assess for:

  • genetic susceptibility and family history of cancer
  • advancing age, alcohol consumption, and obesity, which are linked to cancer
  • risk factors, including, but not limited to, smoking and exposure to secondhand smoke, environmental chemicals and toxins, ultraviolet light, radiation, and the sun
  • exposure to infections, particularly human papillomavirus, which can lead to cervical and penile cancer; HPV-16 and HPV-18 subtypes are especially carcinogenic
  • changes in the size and shape of stools and the presence of blood in the stool
  • lumps around the breasts, in both women and men; the axillae; groin; testicles; thyroid gland; and neck
  • problems swallowing
  • skin lesions that are raised or flat and change color, symmetry, and shape
  • hematuria, dysuria, or urinary hesitancy or retention
  • easy bruising or bleeding
  • diagnostic indicators of cancer, such as complete blood cell count results of bone marrow biopsy, protein electrophoresis, tumor marking tests, prostate-specific antigen, cancer-antigen 125, X-ray, ultrasound, computed tomography, and MRI.

Patient teaching

  • Have an annual health exam and report any subtle or pronounced signs or symptoms.
  • Reduce lifestyle risks associated with cancer development.
  • Have a routine mammogram and any time there's a new lump or pain in the breasts.
  • Perform routine breast-self-exams.
  • Perform routine testicular-self-exams.
  • Have a routine colonoscopy and any time there's a change in stool size, shape, or color or if blood is present in the stool.
  • Report changes in skin color or lesions.
  • Report easy bruising and bleeding, shortness of breath, or easy fatigue.
  • Report bone, chest, flank, or abdominal pain.

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