Chapter 36

Chronic Illness, Disability, and End-of-Life Care

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Scope of the problem Increasing viability of preterm infants Portability of life-sustaining technology Life-extending treatments Rise in the numbers of children with complex and

chronic diseases

Children with Chronic or Complex Diseases

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Trends in care Developmental focus Family-centered care Family–health care provider communication Establishing a therapeutic relationship The role of culture Shared decision making “Normalization”

Children with Chronic or Complex Diseases (Cont.)

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Effects of the child’s chronic illness or disability Parents

• Parental roles• Mother–father differences• Single-parent families

Siblings

The Family of a Child with Chronic or Complex Conditions

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Concurrent stresses within the family Additional stressors

Coping mechanisms Behaviors aimed at reducing tension

Parental empowerment Recognizing, promoting, and enhancing competence

Coping with Ongoing Stress and Periodic Crises

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Shock and denial Adjustment Reintegration and acknowledgment Establishing a support system

Assisting Family Members in Managing Feelings

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Developmental aspects Coping mechanisms

Five distinct patterns of coping Hopefulness Health education and self-care

The Child with a Chronic or Complex Condition

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The Child with a Chronic or Complex Condition (Cont.)

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The Child with a Chronic or Complex Condition (Cont.)

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Assessment Providing support at time of diagnosis Supporting family’s coping methods

Parents Parent-to-parent support Advocating for empowerment The affected child Siblings

Nursing Care of the Family and Child

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Activities of daily living Possible differences in nutritional requirements

Safe transportation Modification regarding car safety

Primary health care All the usual health care Communication in an emergency

Educating About the Disorder and General Health Care

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Educating About the Disorder and General Health Care (Cont.)

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Early childhood Basic trust, separation from parents, beginning

independence School age

Industry/activity Adolescence

Developing independence/autonomy

Promoting Normal Development

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Promoting Normal Development (Cont.)

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Promoting Normal Development (Cont.)

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Cultivate realistic vocations for the child with chronic illness or disabilities

Prolonged survival leads to new decisions and problems Independent living Marriage, employment, insurance coverage Reproductive decisions

Establishing Realistic Future Goals

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Principles of palliative care Pain and symptom management

Decision making at end of life Ethical considerations Physicians, health care team Parents The dying child

Perspectives on Care of Children at End of Life

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Treatment options for terminally ill children Hospital Home care Hospice

Perspectives on Care of Children at End of Life (Cont.)

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Perspectives on Care of Children at End of Life (Cont.)

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Fear of pain and suffering Pain and symptom management Parents’ and siblings’ need for support

Child’s fear of dying alone or parent’s fear of not being present at time of child’s death

Fear of actual death Place of death

Home or hospital

Care of the Child andFamily at End of Life

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Meaningfulness of acting to benefit another human being

Common questions asked by families Sensitive approach Organ donation: legislated in many states Unexplained or violent death

Autopsy may be required by law

Organ or Tissue Donationand Autopsy

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Grief: a process Highly individualized Anticipatory grief Mourning process

Grief and Mourning

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Recognition of when grief becomes “complicated” or “abnormal”

Parental grief Sibling grief Nurse’s reactions to caring for dying children

Grief

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A common best practice in the provision of services to children with special needs is:

A. Care is now being focused on the child’s chronologic age.

B. Children with special needs are being integrated into regular classrooms.

C. Children with special needs no longer have to be cared for by their families.

D. Children with special needs are being separated into residential treatment facilities.

Question

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