Providing Care in Chronic Disease: The Ever-Changing Balance of Integrating Palliative and Restorative Medicine

Pediatric Clinics of North America - Tập 54 - Trang 799-812 - 2007
Jeffrey C. Klick1,2, Allison Ballantine1,2
1Department of Pediatrics, University of Pennsylvania School of Medicine, 3600 Market Street, Suite 240, Philadelphia, PA 19104, USA
2Division of General Pediatrics and the Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, 2nd Floor Main Hospital, Room 2415, 34th and Civic Center Blvd., Philadelphia, PA 19104, USA

Tài liệu tham khảo

Behrman, 2002 Himelstein, 2004, Pediatric palliative care, N Engl J Med, 350, 1752, 10.1056/NEJMra030334 Arias, 2003, Annual summary of vital statistics—2002, Pediatrics, 112, 1215, 10.1542/peds.112.6.1215 Mortality data from the National Vital Statistics System. Available at: http://www.cdc.gov/nchs/about/major/dvs/mortdata.htm. Accessed March 29, 2004. Graham, 2005, Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities, J Dev Behav Pediatr, 26, 361, 10.1097/00004703-200510000-00004 Ray, 2002, Parenting and childhood chronicity: making visible the invisible work, J Pediatr Nurs, 17, 424, 10.1053/jpdn.2002.127172 Selwyn, 2003, Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: “let me live the way I want to live, until I can't”, JAMA, 290, 806, 10.1001/jama.290.6.806 American Academy of Pediatrics, 2000, Committee on Bioethics and Committee on Hospital Care. Palliative care for children, Pediatrics, 106, 351 1997 Steele, 2000, Trajectory of certain death at an unknown time: children with neurodegenerative life-threatening illnesses, Can J Nurs Res, 32, 49 Wolfe, 2000, Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care, JAMA, 284, 2469, 10.1001/jama.284.19.2469 Granvelle, 1997, Caring for a child with a progressive illness during the complex chronic phase: parents' experience of facing adversity, J Adv Nurs, 25, 738, 10.1046/j.1365-2648.1997.1997025738.x Clements, 1990, Critical times for families with a chronically ill child, Pediatr Nurs, 16, 157 Bradford, 1991, Staff accuracy in predicting the concerns of parents of chronically ill children, Child Care Health Dev, 17, 39, 10.1111/j.1365-2214.1991.tb00677.x Coyne, 1995, Partnership in care: parents' views of participation in their hospitalized child's care, J Clin Nurs, 4, 71, 10.1111/j.1365-2702.1995.tb00014.x Kirk, 1998, Families' experiences of caring at home for a technology-dependent child: a review of the literature, Child Care Health Dev, 24, 101, 10.1046/j.1365-2214.1998.00043.x Siperstein, 1991, Physicians' prognoses about the quality of life for infants with intraventricular hemorrhage, J Dev Behav Pediatr, 12, 148, 10.1097/00004703-199106000-00002 Siperstein, 1994, Professionals' prognoses for individuals with mental retardation: search for consensus within interdisciplinary settings, Am J Ment Retard, 98, 519 Wolraich, 1991, Doctors' decisions and prognostications for infants with Down syndrome, Dev Med Child Neurol, 33, 336, 10.1111/j.1469-8749.1991.tb14884.x Siperstein, 1988, Medical decisions and prognostications of pediatricians for infants with meningomyelocele, J Pediatr, 113, 835, 10.1016/S0022-3476(88)80010-6 Affleck, 1980, Physicians' attitudes toward discretionary medical treatment of Down's syndrome infants, Ment Retard, 18, 79 Todres, 1977, Pediatricians' attitudes affecting decision-making in defective newborns, Pediatrics, 60, 197, 10.1542/peds.60.2.197 Young, 2002, Parenting in a crisis: conceptualising mothers of children with cancer, Soc Sci Med, 55, 1835, 10.1016/S0277-9536(01)00318-5 Coffey, 2006, Parenting a child with chronic illness: a metasynthesis, Pediatr Nurs, 32, 51 Hewitt-Talor, 2005, Caring for children with complex and continuing health needs, Nurs Stand, 19, 41, 10.7748/ns2005.06.19.42.41.c3900 Wheeler, 2001, Parental bereavement: the crisis of meaning, Death Stud, 25, 51, 10.1080/07481180126147 Robinson, 2000, Palliative care in cystic fibrosis, J Palliat Med, 3, 187, 10.1089/10966210050085250 Kunin, 1997, Ethical issues in pediatric life-threatening illness: dilemmas of consent, assent, and communication, Ethics Behav, 7, 43, 10.1207/s15327019eb0701_4 Amendments to Child Abuse Prevention and Treatment Act. Public Law 98-457. US Statut Large, 1984. 98(Title I Sections 101a–312a): p. Unknown. Kopelman, 1988, Neonatologists judge the “Baby Doe” regulations, N Engl J Med, 318, 677, 10.1056/NEJM198803173181105 Children's International Project on Palliative/Hospice Services (ChIPPS). A.P.W. A call for change: recommendations to improve the care of children living with life-threatening conditions. 2001. Available at: http://www.nhpco.org/files/public/ChIPPSCallforChange.pdf. Accessed March 29, 2004. 2000 Last Acts Palliative Care Task Force. Precepts of palliative care for children/adolescents and their families. Available at: http://www.lastacts.org/files/publications/pedprecept.pdf. Accessed March 29, 2004. Slonim, 2003, Hospital-reported medical errors in children, Pediatrics, 111, 617, 10.1542/peds.111.3.617