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Understanding Family Emotions

Introduction to basic issues (1)

The family is the unit of care
  1. Families function as a unit. A diagnosis of cancer that affects one family member will have a ripple effect on every member of that family.
  2. "Family" is interpreted to mean those individuals who are close to the person with cancer and who interact with the person with cancer on a regular basis.
  3. While the family must be considered as a unit, it is important to recognize that there may be different styles of coping among family members. Family members may be at different stages of acceptance of the disease. Some families ultimately arrive at the same stage of acceptance of the disease, however, many do not.
  4. A family member's age and the developmental stage and tasks that s/he is facing will have a direct impact on how the cancer is viewed.
  5. Conflicted relationships among family members may remain difficult. Some patients or their family members may wish that the cancer will bring about resolution of longstanding family problems. This rarely occurs.

The cancer continuum

  1. Transition points in the cancer illness trajectory such as the point of diagnosis, initiation or cessation of treatment, hospitalization, discharge, recurrence, and terminal care are characterized by elements of a well documented response for patients and their families. These transition points, although turbulent, can provide opportunities for resolution and growth provided that there is timely assessment, education and when needed, intervention.
  2. Some family members may exhibit ambivalent, or even inappropriate emotions at these times. It is important to acknowledge that this is a normal response to a very turbulent time.

Manifestations during transitions points

  1. Anxiety
  2. Depression
    1. It is important to help families identify the difference between normal sadness and clinical depression. This can be particularly difficult because many symptoms of depression are also symptoms of cancer and cancer treatment. (2,3,4,5).

      Symptoms of depression include:

      • Hopelessness
      • Appetite changes (increase or decrease)
      • Insomnia or excessive sleeping
      • Loss of interest in usually enjoyable activities
      • Nothing cheers individual up
      • Excessive crying
      • Suicidal preoccupation
      • Guilt
      • Individual moves more slowly than usual
      • Loss of ability to concentrate
      • Irritability

      Common Myths associated with depression among patients and caregivers
      • Depression is common and expected with the cancer experience
      • There are no good treatments for depression in patients with
      • Upsetting issues should not be discussed openly for fear of unleashing painful feelings and making depression worse.
    2. A word about suicide. Suicide is not overwhelmingly more common among people with cancer. If a patient or family member expresses thoughts about suicide, they should be evaluated. In addition, every effort should be made to ensure that all distressing symptoms have been addressed,
  3. Insomnia
  4. Changes in eating patterns

Major issues during transition points

  1. Disclosure of information
  2. Access to information
  3. Decision making regarding treatment
  4. Ability to build on family strengths and normalize upsetting emotions
  5. Knowing when and how to ask for help

Patient and family response to chronic living phase of the cancer continuum

Manifestations of living with a chronic illness
  1. Distressing symptoms
  2. Increased dependency
  3. Fatigue
  4. Social isolation
Stresses associated with chronic illness
  1. Body image
  2. Psychosexual issues
  3. Fear of recurrence
  4. Life style changes
Strategies for mobilizing the patient and family include:
  1. Symptom management
  2. Normalizing
  3. Managing treatment regimens
  4. Enhancing communication
  5. Identifying dysfunctional family patterns and referring for evaluation and treatment

Patient and family response to terminal illness

Major issues
  1. Fear
  2. Hope
  3. Unfinished business
  4. Loss and grief
Manifestations of the terminal phase
  1. Exacerbation of symptoms
  2. Depression
  3. Withdrawal
  4. Heightened anxiety
  5. Search for meaning

Strategies to enhance communication about feelings

Videotape: Common Emotions about Caregiving

The videotape is designed to serve as an icebreaker, to normalize emotions, encourage self disclosure in a safe environment, and to identify individuals in need of outside referral. This guide is designed to help you facilitate discussion about each of the scenarios presented in the video. The questions included are only samples of those you might use in stimulating active participation by the caregiver. There is a possibility that the scenarios could evoke strong emotional displays in the participants or a description of severe problems that the caregiver or patient are experiencing. Within that context this experience can be used as an assessment strategy to determine individuals in need of outside referrals.

Talking with Your Physician Scenario 1

What is the issue here?

  • Caregiver and patient are reluctant to ask the questions they really want to ask.

Why is there reluctance to ask questions?

  • Too overwhelmed or don't know what questions to ask
  • Afraid of the answers
  • Have not given much thought to information needed

How could this situation be handled?

  1. Make a list of questions together beforehand and write them down. Good questions might include: Treatment information: what drugs? how often? number of treatments? How will effectiveness be measured? Activity limitations: exercise? sexual? social (i.e. alcohol)? What to do if problems arise: who to call? How to recognize when an emergency exists
  2. Let the physician know that you have a list of questions.
  3. Present questions in succinct manner.

Talking with Your Physician Scenario 2

What are the issues here?

  • Caregiver and patient are unable to articulate their questions
  • Physician is giving off signals that he doesn't want to answer question
  • Lack of assertiveness on the part of the patient and caregiver

What strategies might be useful here?

  1. Again, make a list of questions together beforehand and write them down.
  2. Let the physician know that you have a list of questions early on in the visit
  3. Ask the physician to sit down
  4. Present questions in succinct manner.
  5. Acknowledge the distress that doctor's behavior causes.

Role Changes Scenario 1

What are the issues here?

  • Daughter has become the parent
  • Loss due to role changes
  • Role strain, role overload

What can she do?

  • Communicate about feelings
  • Negotiate with other family members about helping
  • Outside resources
  • Support groups

Role Changes Scenario 2

What are the issues here?

  • Role overload
  • Role changes
  • Need to feel effective, needed
  • Loss of income

What can be done?

  • Acknowledge feelings
  • Renegotiate the roles
  • Share decision making
  • Explore benefits and investigate job situation

Depression Scenario 1

What are the issues here?

  • Although feelings of depression are common, serious depression is not a normal part of the cancer experience.
  • These people are depressed enough that outside help is warranted
  • Psychological problems that warrant outside help can be treated effectively and do not signal short comings on the part of the people that experience them

What can be done?

  • Seek outside help: trained social workers, nurses, psychologists, psychiatrists
  • Referrals can be obtained from the American Cancer Society and often your oncologist

Anger Scenario 1

What are the issues here?

  • Caregiver feels it's wrong to be angry
  • Caregiver feels anger has taken over her life
  • For some people anger is a more comfortable feeling to deal with than the fear and uncertainty associated with the situation. For others anger is often displaced and directed at family members and friends who are close.

What can be done?

  • Recognize angry feelings as normal
  • Increase awareness of the source of anger
  • Develop productive mechanisms to relieve anger i.e. activity, exercise, ventilating feelings
  • Acknowledge the persons right to be angry without amplifying the anger


References

  1. Douglas Rait and Marguerite Lederberg (1989) The Family of the Cancer Patient. Chapter 47. Handbook of Psycho-Oncology: Psychological Care of the Cancer Patient J. Holland, ed. Oxford University Press, New York.

  2. Mary Jane Massie and Jimmie C. Holland (1984) Diagnosis and treatment of depression in the cancer patient. Journal of Clinical Psychiatry, 45(3, section 2) 25-9.

  3. Margaret S. Wool (1990) Understanding depression in medical patients: II. Clinical intervention. Special issue: An Evolution: Clinical social work in health care. Social Work in Health Care, 14(4) 39-52.

  4. AJ Roth, and W Breitbart (1996) Psychiatric emergencies in terminally ill cancer patients. Hematology-Oncology Clinics of North America. 10(1):235-59.

  5. W Breitbart, PB Jacobsen (1996) Psychiatric symptom management in terminal care. Clinics in Geriatric Medicine. 12(2): 329-47.




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