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521 abandonment, feelings of, 43, 59, 80, 195, 235, 285, 392 abortion, 348, 356, 357, 455, 456. See also pregnancy access, 48–49, 56, 57, 59, 64–65, 66 acetaminophen, 251, 373, 378, 426, 471, 474 acetazolamide, 263, 513 n-acetyl cysteine, 261 addiction, 49, 325, 402, 426, 507 adjunctive therapies, 265–69 adjuvants, 244, 251–52, 257, 402, 403 adolescents, 14, 158–59, 195, 268, 423, 426, 501; and hematology/oncology, 500–501; and HIV/AIDS, 470, 480, 482; understanding of, 235, 268, 481. See also decision making adrenoleukodystrophy, 447 advance care planning, 139, 142, 377, 391, 409; collaborative and evolutionary approach to, 193–94; and hematology/oncology, 503, 512; and HIV/AIDS, 482–83; and neonatal period, 359–60, 361; and PICU, 388, 399, 404–6 advocacy, 27, 37, 73, 88, 114–35, 417; and community assessment, 123–28; definition of, 115; and designated advocate, 313; and difficulties with change, 115–16; and funding, 133–34; indirect, 122–23; and media, 123, 128–30, 131; and name for organization , 116–17; support networks for, 117–20 African Americans, 14, 16, 66–67 agitation, 257, 368, 376 air hunger, 402, 408 Akron Children’s Hospital (Ohio), 108 alfentanil, 253 American Academy of Hospice and Palliative Medicine (AAHPM), 107 American Academy of Pediatrics (AAP), 91, 107 American Association of Colleges of Nursing (AACN), 86 American Board of Pediatrics (ABP), 106 American Cancer Society, 434 amitriptyline, 257, 474 analgesia, 248, 249, 251, 252, 260, 368, 373. See also medications; pain anencephaly, 347, 355, 446, 450 anhydramnios, 347 antibiotics, 512, 514–15 anticholinergics, 252, 260, 262 anticonvulsants, 252, 264, 377, 434 antidepressants, 252, 475 antiemetics, 257, 260, 508, 513 antihistamines, 262, 404 antipyretics, 472, 473 antiretroviral therapy (ART), 466, 467, 468, 470, 471, 484 INDEX 522 inde anxiety, 266, 279, 295, 425; and benzodiazepines , 408; and communication with children, 210, 211, 212; and hematology/oncology, 506, 507; and HIV/AIDS, 474, 475; medication for, 256, 404; and PICU environment, 392, 398 anxiolytics, 376 appetite, 258–59 arthrogryposis multiplex congenita, 446, 450 arts/art therapy, 208, 212–13, 266–69, 270, 334, 420, 427 asphyxiating thoracic dystrophy, 446, 450 assent, by children, 77. See also informed assent; informed consent Association of Medical School Pediatric Department Chairpersons (AMSPDC), 95, 96 Association of Pediatric Hematology Oncology Nurses (APHON), 90 autonomy, 27, 29, 31, 41, 42, 43, 44, 46–47 autopsy, 185–86, 279, 369, 407, 410, 455 azithromycin, 473 Baby Doe regulations, 353 barbiturates, 404 Batten disease, 447, 448 Beck Depression scale, 475 benzodiazepines, 155, 256, 257, 258, 261, 376, 379, 404, 408, 513 bereavement, 21, 28, 121, 275–304, 417; acknowledgment and processing of, 332–33; and child’s decision making, 157; common themes in, 276–87; and communication, 286, 302; community resources for, 300; and connection to medical team, 291; and contact with child’s body after sudden death, 293; and continuity of care, 301–2; counseling for, 300–302; and expression of feelings, 278–79; and families, 11, 276, 285–87, 333, 515–16; and follow-up support, 301–2, 335; and genetic diseases, 456; and hematology/oncology care, 515–16; and home care, 424, 438; and ICU environment, 392, 393, 397; and nursing education, 86, 87, 89; and open communication with child, 190; packets for, 298; and parents, 276, 290; and perinatal death, 293–302; and PICU, 410; plan of care for, 285–87; and prenatal period, 357; and religious support, 194; resources for, 299–300, 302, 308; satisfaction with support in, 301; and school groups, 433; and siblings, 290; and sudden death, 291–93; support for, 58, 96; support groups for, 279, 284, 300, 301–4; and uncertain prognosis, 287–91; and unknown factors, 160; updates for, 335. See also grief birth defects, 354, 355–56, 435, 462 bisphosphonates, 509 blood pressure medications, 405 bone marrow failure, 511–12 bone marrow transplant, 490–91 brain, 256, 257, 264, 461 brain death, 49–50, 62 bronchodilators, 261 buprenorphine, 253, 255 butyrophenone, 404 California Department of Health Care Services, 130 cancer, 10–11, 12, 13, 88, 255, 263, 476, 477. See also hematology/oncology Candida esophagitis, 472 Candlelighters Childhood Cancer Foundation, 434, 438 capecitabine, 511 cardiac anomaly, 355 cardiac pacing, 434 cardiopulmonary resuscitation (CPR), 367, 405, 434 cardioversion, 434 caregivers. See health care professionals; nurses; parent(s); physicians; suffering, caregiver care teams, early involvement of, 59, 68, 75, 79, 80, 82, 145, 195, 207–8 care/treatment: burdens of, 38, 60, 67, 140, 400, 492, 499; child-centered, 27; continuity...

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