Long-Term/Terminal Illness

LONG-TERM OR TERMINAL ILLNESS

LONG TERM ILLNESS

  • Factors influencing parental adjustment:

    • Degree of illness

    • Relationship with own parents

    • Onset of illness

    • Effect of parental experience

    • Availability of support people

    • cbLife events

PARENTAL ADJUSTMENT

  • Table 56.2 - Factors That Ease Parental Adjustment to a Child's Long-Term Illness

    • Factors:

    • Support people are available.

      • Rationale: Caring for a child is a series of crises during which support people become very important.

    • A strong marital bond exists between the parents.

      • Rationale: A marriage partner can serve as the strongest support person.

    • A good relationship exists between the child's parents and their own parents.

      • Rationale: The parents (because they had good care) have a firm sense of trust and are capable of giving care to another.

    • The child is not the first born.

      • Rationale: The parents have had practice parenting.

    • The family lives close to shopping, schools, and transportation.

      • Rationale: The family is not isolated.

    • The family has a strong religious faith or community contacts.

      • Rationale: Secondary support systems are important in times of stress.

    • The parents are informed of the child's disability as soon as possible.

      • Rationale: A handicap may be easier to accept if the parents never thought of the child as totally well.

  • Categories of nursing diagnoses related to family care:

    • Interrupted family processes

    • Compromised family coping

    • Disabling family coping

    • Anticipatory grieving

    • Risk for delayed growth and development

LONG TERM CARE

  • Working with Parents:

    • Addressing developmental tasks.

    • Providing education concerning the illness.

    • Offering home care resources and support.

    • Review specific aspects of condition and possible complications.

    • Recognize that parents become experts in caring for their child.

    • During care appointments, review with parents the typical methods of procedures so that nursing care aligns with their home practices; for older children, involve them in this process.

    • Familiarity with community resources is essential.

KÜBLER-ROSS 5 STAGES OF GRIEF

  1. Denial

  2. Anger

  3. Bargaining

  4. Depression

  5. Acceptance

STAGES OF GRIEF

  • Table 56.1 - The Stages of Grief and Parents' Reactions:

    • Stage 1 - Denial:

    • Parents have difficulty acknowledging the reality of the situation. Common question: "How could this have happened?"

    • Stage 2 - Anger:

    • Parents express resentment regarding their situation. Common statement: "It isn't fair this is happening."

    • Stage 3 - Bargaining:

    • Parents attempt to negotiate to improve their circumstance. Common statement: "If my child gets well, I'll devote the rest of my life to doing good."

    • Stage 4 - Depression:

    • Parents confront the reality and express sadness and feeling unprotected.

    • Stage 5 - Acceptance:

    • Parents acknowledge the reality of the situation but may remain in chronic sorrow from depression. Based on Kübler-Ross, E. (1969). On Death and Dying. New York: Macmillan.

TERMINAL ILLNESS

  • Parental Coping Responses:

    • Anticipatory grief

    • Vulnerable or fragile child syndrome

    • Acknowledgment of self-awareness

    • Overcoming fear

    • Accepting feelings of failure

NURSING DIAGNOSIS

  • Potential diagnoses for end-of-life care include:

    • Hopelessness

    • Anticipatory grieving

    • Powerlessness

    • Decisional conflict

CARING FOR THE DYING CHILD

  • Developmental considerations:

    • Toddler: has no concept of time or space; fears separation from family.

    • Preschooler: perceives death as temporary; understands it as akin to sleep; fears separation from family.

    • School-age child: grasps the permanence of death and may view illness as punishment; fears pain and abandonment.

  • Care strategies:

    • Provide the child with factual information.

    • Elicit and discuss their feelings openly.

    • Use age-appropriate language to communicate.

    • Avoid euphemisms like "sleep" when discussing death, as this may instigate fear of sleep.

    • Utilize hospice and palliative care resources effectively.

WHEN DEATH IS IMMINENT

  • Key considerations:

    • Ensure someone is present with the child at all times to alleviate feelings of abandonment.

    • Talk about everyday events or the process of dying, recognizing the child can hear even if unresponsive.

    • Encourage physical interactions such as touching or hugging.

    • Anticipate parents' emotional responses, including anger and guilt.

    • Include siblings, grandparents, and clergy in the support network.

TERMINAL ILLNESS- NURSING ACTIONS

  • Continue to use gentle touch and nonverbal communication.

  • Frequently clean mucous membranes with clear water and apply ointment to the lips.

  • Administer eye drops for moisture, use supportive pillows, and maintain proper positioning.

  • Keep skin free from urine and feces, assess for pain indicators, and provide comfort measures accordingly.

PHYSIOLOGIC CHANGES AT END OF LIFE

  • Signs of dying include:

    • Slowed metabolism, decreased cell oxygenation, and cell dysfunction.

    • Increasing internal temperature, slow respiration, and the presence of rales.

    • Severe weakness, fatigue, and loss of consciousness near death.

    • Changes in vision and hearing capabilities; vision may blur while hearing remains.

    • Gastrointestinal symptoms may include slowed digestion, constipation, and decreased peristaltic action.

DEATH IS IMMINENT

  • Observable changes in appearance:

    • Skin may feel cool, and discoloration such as mottling or cyanosis may appear.

    • Dependent body parts may turn purple as death approaches.

    • Increased perspiration can be noted.

    • The child often maintains the position they are placed in.

    • Constant hand movement may still be present, often responding to gentle stroking; may also grasp hands meaningfully.

    • Signs of abdominal distension and dehydration with dry mucous membranes and conjunctivae