Psychosocial Issues
Karin Taylor
Laura Herald Hoofring
I. Overview:
The emotional responses to a diagnosis of cancer are varied and never static as patients and families make their way through their cancer journey. They often report feeling devastated, shocked, afraid, angry, sad, guilty, demoralized, anxious, depressed, confused, and out of control of their lives. Compounded by the physical problems brought on by their cancer and treatments, coping can be difficult. Fortunately, with assistance and support, many patients and families do well. Nurses can help patients and families. This chapter explores the influence of multiple factors on patients’ and caregivers’ coping, specific disorders that impede coping, and nurse interventions in caring for patients and families.
COPING WITH LIFE-THREATENING ILLNESS
I. Personality Characteristics
A. A person’s basic personality will affect how he or she responds to the diagnosis and treatment.
B. These characteristics and responses are on a continuum.
C. Usually, people respond to illness as they responded to life and stressors in the past.
D. Stress will make personality characteristics more pronounced.
E. It is important to find out what they were like before their illness (their premorbid personality [PMP]).
F. It is important to get feedback from the family or significant others regarding the patient’s usual presentation and ways he or she now is different.
G. Examples:
1. People who tend to like control will have more anxiety because of their lack of control.
2. People who withdraw when anxious will do so more now.
3. People who are optimistic will generally meet their diagnosis and treatment with optimism.
II. Life Story
A. What people have experienced in their lives that has shaped their view of themselves and the world around them
B. Assessment
1. Helpfulness of support systems in the past
2. Past successes and failures
3. Past experience with illness and death
4. How they dealt with past challenges
III. Current Life Role
A. What their role is now; can be multiple (eg, mother, teacher, daughter, wife, and so forth).
B. Includes age-specific tasks and determines the demands placed on them.
C. How have they changed because of their diagnosis or treatment?
D. What has changed for others in the family because of cancer?
E. Who depends on them and who will take over their care?
F. Do they have support systems and how do they use them?
IV.
Their life story and personality characteristics along with their current life roles have much to do with their reaction to their diagnoses and treatment.
A. The interaction of all three can determine the amount and type of emotions they experience (eg, anxiety, optimism, anger).
B. Concern develops when their emotions and response are different and troublesome from past periods of adversity. This may indicate a greater problem with mood or adjustment, and intervention may be needed.
C. Include family members’ assessment regarding any change.
V. Culture
A. Lens through which patients and families interpret and understand their experiences.
1. Practices, beliefs, values
a. Illness beliefs
b. Health practices
c. Death rituals
d. Family relationships
e. Symptom management
f. Activities of daily living
g. Food practices
2. Language
B. Being aware and respectful of the cultural differences of patient, family, and staff is essential to providing good care.
C. Assessment
1. Practices, beliefs, values
2. Impact of the patient’s and family’s cultural practices, beliefs, and values on their understanding of their illness and treatments
D. Interventions
1. Ensure that the plan of care reflects the cultural beliefs, values, and practices of the patient and family.
2. Seek assistance (eg, experts, literature) to help overcome barriers and increase understanding.
VI. Existential Factors
A. Meaning of the Illness: Finding meaning or making sense of the illness
1. Evolves and changes over time.
2. Reflects each person’s interpretation of the disease, treatments and circumstances.
3. Many variables (eg, culture, past experiences, religion/spirituality, and so forth) influence the meaning that patients and caregivers ascribe to the illness and experiences.
4. Differences between nurse’s own “meanings” of the illness and those of patients and families can be a source of conflict.
5. Assessment
a. How have you made sense or what meaning have you found in what is happening to you/your loved one?
B. Suffering
1. Cancer diagnosis makes people think of pain, suffering, and death.
2. Has physical, psychological, emotional, and spiritual components for each patient and family member.
3. Is closely connected to one’s sense of the meaning of the illness and circumstances.
4. Uncontrolled symptoms can increase one’s sense of suffering and greatly affect one’s sense of hope.
5. Past experiences with suffering will affect how patients and families respond.
6. Assessment
a. Do you have concerns about physical suffering?
b. What can nurses do to minimize or eliminate any suffering you may experience?
C. Hope
1. Described as the “activating force of the human spirit” (Fromm).
2. Patient’s and family’s sense of hope will be ever-changing and redefined throughout their or their loved ones’ illness.
3. Treatments received, nurses, physicians, and other health care providers are often seen as sources of hope for patients and families.
4. At times, patients/families may appear to have “unrealistic” hope.
a. May be needed as a coping mechanism to “protect” their emotional well-being at that time
b. Becomes concerning if it prevents them from attending to timely concerns (eg, making a will)
5. Loss of hope can lead to feelings of apathy and meaninglessness and can be a significant indication of major depression (see section below on Major Depression).
6. Assessment.
a. What are the things in your life that you are hoping will happen?
b. If a cure is not possible, what are your hopes for the time you have?
D. Spirituality/Religion
1. Spirituality speaks to issues of transcendence, interconnectedness, and meaningfulness.
2. Religion is a specific view with a belief system and is expressed through rituals, practices, and observances.
3. Is often a sustaining factor in helping patient/family find meaning and hope in the illness and experience.
4. Studies have repeatedly shown that those with spiritual/religious beliefs have higher sense of well-being.
5. Assessment.
a. What role does faith or spirituality play in your life?
b. What role has it taken in difficult times?
E. Interventions
1. Honor the importance of your relationship with patients and families.
2. Educate and manage symptoms to increase patient’s and family’s sense of control and well-being, thus decreasing suffering and increasing hope.
3. Assist in their search for positive meanings and hope by listening, normalizing, validating, and reframing.
4. Assist in setting attainable and realistic goals.
5. Make appropriate referrals (eg, chaplains and clergy, social workers, psychiatric nurses, and psychiatrists) as needed.
6. Assist the patient and family in practicing their religious beliefs (eg, have a Muslim patient’s bed face east toward Mecca for prayers, assist an Orthodox Jewish patient in getting kosher foods).
VII. Loss and Grief
A. Definition: A loss is an experience in which a person loses connection to a valued object, relationship, situation, or part of self. Grief is the natural human response to loss. Grieving is the process of responding to the loss through thoughts, feelings, and behaviors.
B. The losses that patients and families experience are numerous and can be physical, social, occupational, financial, emotional, relational, and spiritual in nature.
C. Many variables affect the response(s) a patient and family have to a loss or losses.
1. Meaning of the loss
2. Personality (see section above on Personality Characteristics)
3. Age and developmental level
4. Resources and support
5. Reactions of others
6. Past experiences with loss and grief
7. Coping patterns
8. Cultural values and beliefs
D. There are physical and emotional characteristics in the stages of loss and grief that patients and families experience (Table 31-1).
TABLE 31-1 Physical and Emotional Characteristics of Stages of Loss and Grief | ||||||||||||
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E. Interventions
1. Encourage patients and families to talk about their losses and grief. Give them permission to grieve.
2. Provide safe, nonjudgmental environment that allows them to express both positive and negative feelings.
3. Listen carefully and normalize and validate their feelings and experiences.
4. Facilitate coping.
a. Identify effective coping skills.
b. Make referrals to support groups, bereavement groups, and counseling.
c. Educate them about expected thoughts, feelings, and behaviors associated with loss and grief and roadblocks to the grief process (eg, social isolation, closed communication).
5. Encourage use of cultural, religious, and social customs and rituals associated with loss and grief.
6. Monitor for signs of dysfunctional grieving, which occurs when the grieving process interferes with the usual level of functioning.
a. Physical changes or decline in physical or psychosocial functioning
b. Social withdrawal
c. Critical changes in behavior (eg, oversedation, emotional extremes [guilt, anger, hostility], depression, substance abuse, expression of suicidal intentions) should be reported and appropriate referrals initiated. (See sections below on Major Depression and Suicide, and Substance Abuse/Dependence.)
VIII. Intimacy and Sexuality
A. Many factors may alter one’s sexual health and intimacy with his or her partner.
1. Changes in physical appearance
2. Fatigue, pain, and other symptoms associated with cancer and treatment
3. Surgeries (prostatectomy, hysterectomy, mastectomy, ostomies)
4. Side effects of medications and treatment that impair libido and sexual gratification
5. Fear and anxiety
6. Lack of knowledge
7. Embarrassment
B. Alterations can cause a great deal of distress.
1. Stress and breakdown in relationships
2. Decrease one’s sense of quality of life
3. Lower one’s self-esteem or sense of worth
C. Often not addressed by nurses and physicians.
1. Discomfort
a. Important for nurses to assess their beliefs and comfort related to sexuality and seek education/supervision
2. Time limitations especially in outpatient settings
3. Readiness of the patient to discuss sexual health
4. Lack of knowledge/resources
5. Seen as an unimportant issue in context of their disease and treatment
D. Interventions
1. Assess patient’s and partner’s level of concern and knowledge related to intimacy and sexuality.
a. Ask open-ended questions: “Many patients with cancer notice changes or problems in their sex lives. Do you have any problems or concerns related to your sexuality?”
b. Ask about premorbid sexual health to provide basis of understanding of current concerns or problems.
2. Provide safe, open, and nonjudgmental environment when discussing patient’s sexual health.
3. If uncomfortable discussing sexual issues, make appropriate referrals to convey a sense of importance and care for the patient’s sexual health.
4. Patient/partner education.
a. Changes secondary to their treatments as related to their sexual health and functioning
b. Alternative positions for sexual intercourse that may be more comfortable
c. Use of assistive devices
(1) Lubricants
(2) Vaginal dilators
d. Alternatives to intercourse that provide intimacy: Massage, cuddling, hand holding, manual stimulation, and so forth
e. Times when sexual activity should be avoided
f. Medication side effects
g. Reproductive information
(1) Egg and sperm banking
(2) Use of condoms and birth control
5. Informational resources for nurses, patients, and partners.
a. American Cancer Society—www.cancer.org
b. National Cancer Institute—www.cancer.gov
c. Cancer Care—www.cancercare.org
IX. Demoralization
A. Definition: Inability to tolerate the adversity they are experiencing.
B. Often occurs in relationship to physical symptoms, discomfort, or losses.
C. It can be difficult to differentiate from major depression.
D. In demoralization (unlike major depression):
1. Mood usually improves as their physical state improves.
2. Patients rarely believe they deserve to suffer.
E. Other causes of mood changes can be medications (steroids, interferon), a delirious state, or anxiety.
F. Presentation.
1. Mood may be sad, anxious, irritable, depressed, or angry.
2. They may be withdrawn, demanding, depressed, uncooperative, or suicidal.
3. This can be a normal reaction to a difficult situation caused by the diagnosis of cancer.
G. Other factors besides their medical condition can cause this response, such as difficulties with family relationships, financial stressors (see sections above on Personality Characteristics, Life Story, and Current Life Role).
H. Interventions.
1. Take physical complaints seriously (pain, nausea, anxiety) and treat.
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