Chapter 36 Chronic Illness, Disability, and End-of-Life Care All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 2 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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.) 3 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 4 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 5 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 Shock and denial  Adjustment  Reintegration and acknowledgment  Establishing a support system Assisting Family Members in Managing Feelings 6 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 Developmental aspects  Coping mechanisms  Five distinct patterns of coping  Hopefulness  Health education and self-care The Child with a Chronic or Complex Condition 7 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

The Child with a Chronic or Complex Condition (Cont.) 8 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

The Child with a Chronic or Complex Condition (Cont.) 9 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 10 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 11 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

Educating About the Disorder and General Health Care (Cont.) 12 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 Early childhood  Basic trust, separation from parents, beginning independence  School age  Industry/activity  Adolescence  Developing independence/autonomy Promoting Normal Development 13 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

Promoting Normal Development (Cont.) 14 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

Promoting Normal Development (Cont.) 15 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 16 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 17 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 Treatment options for terminally ill children  Hospital  Home care  Hospice Perspectives on Care of Children at End of Life (Cont.) 18 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

Perspectives on Care of Children at End of Life (Cont.) 19 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 and Family at End of Life 20 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 Donation and Autopsy 21 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 Grief: a process  Highly individualized  Anticipatory grief  Mourning process Grief and Mourning 22 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 Recognition of when grief becomes “complicated” or “abnormal”  Parental grief  Sibling grief  Nurse’s reactions to caring for dying children Grief 23 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.

 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 24 All Elsevier items and derived items © 2014, 2010, 2006, 2002, Mosby, Inc., an imprint of Elsevier Inc.