Research in pediatric palliative care: Closing the gap between what is and is not known

American Journal of Hospice and Palliative Medicine

Volumn 26, Issue 5, 2009, Pages 392-398

  Knapp, Caprice A ^a  

^a UNIVERSITY OF FLORIDA   (United States)

Author keywords

Palliative care; Pediatrics; Research

Indexed keywords

ARTICLE; CHILD; HEALTH SERVICE; HEALTH SERVICES RESEARCH; HOSPICE CARE; HUMAN; PALLIATIVE THERAPY; PEDIATRICS; TERMINAL CARE; UNITED STATES;

CHILD; HEALTH SERVICES NEEDS AND DEMAND; HEALTH SERVICES RESEARCH; HOSPICE CARE; HUMANS; PALLIATIVE CARE; PEDIATRICS; TERMINAL CARE; UNITED STATES;

EID: 70350545762     PISSN: 10499091     EISSN: None     Source Type: Journal    
DOI: 10.1177/1049909109345147     Document Type: Article

References (47)

1. Kaiser Family Foundation. Trends in health care costs and spending; 2007.
2. Sullivan AM, Warren AG, Lakoma MD, Liaw KR, Hwang D., Block SD End-of-life care in the curriculum: A national study of medical education deans. Acad Med. 2004;79(8):760-768.
3. Romesberg TL Building a case for neonatal palliative care. Neonatal Netw. 2007;26(2):111-115.
4. Golan HB, Bielorai B., Grebler D., Izraeli S., Rechavi G., Toren A. Integration of a palliative care center into a comprehensive pediatric oncology department. Pediatr Blood Cancer. 2008;50(5):949-955.
5. Pierucci RR, Kirby RS, Leuthner SR End-of-life care for neonates and infants: The experiences and effects of a palliative care consultation service. Pediatrics. 2001; 108(3):653-660.
6. Friedrichsdorf SJ, Remke S., Symalla B., Gibbon C., Chrastek J. Developing a pain and palliative care programme at a US children's hospital. In J Palliat Nurs. 2007;13(11):534-542.
7. Brandon DS, Docherty SL, Thorpe J. Infant and child deaths in acute care settings: Implications for palliative care. J Palliat Med. 2007;10(4):910-918.
8. Zimmermann CR, Riechelmann R., Krzyzanowska M., Rodin G., Tannock I. Effectiveness of specialized palliative care: A systematic review. JAMA. 2008;299(14): 1698-1709.
9. Morrison RS Healthcare system factors affecting end-of-life care. J Palliat Med. 2005;8(1):S79-S87.
10. Meier DE Palliative care in hospitals. J Hosp Med. 2006; 1(1):21-28.
11. London MA, McSkimming S., Drew N., Quinn C., Carney B. Evaluation of a comprehensive, adaptable, life-affirming, longitudinal (CALL) palliative care project. J Palliat Med. 2005; 8(6):1214-1225.
12. Johnston DL, Nagel K., Friedman DL, Meza JL, Hurwitz CA, Friebert S. Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol. 2008;26(28):4646-4650.
13. Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. NHPCO Facts and Figures; 2009.
14. Widger KD, Davies D., Drouin DJ,et al.Pediatric patients receiving palliative care in Canada: Results of a multicenter review. Arch Pediatr Adolesc Med. 2007; 161(6):597-602.
15. Knapp CA, Madden VL, Curtis CM,et al.Partners in care: Together for kids: Florida's model of pediatric palliative care. J Palliat Med. 2008;11(9):1212-1220.
16. Toce S., Collins MA The FOOTPRINTS model of pediatric palliative care. J Palliat Med. 2003;6(6):989-1000.
17. Carroll JC, Torkildson C., Winsness JS Issues related to providing quality pediatric palliative care in the community. Pediatr Clin North Am. 2007;54(5):813-827, xiii.
18. Hays RJ, Valentine J., Haynes G.,et al.The Seattle Pediatric Palliative Care Project: Effects on family satisfaction and health-related quality of life. J Palliat Med. 2006; 9(3):716-728.
19. Donnelly J., Huff S., Lindsey ML, McMahon KA, Schumacher JD The needs of children with life-limiting conditions: A healthcare-provider-based model. Am J Hosp Palliat Care. 2005;22(4):259-267.
20. Ward-Smith P., Linn J., Korphage RM, Christenson K., Hutto CJ, Hubble CL Development of a pediatric palliative care team. J Pediatr Health Care. 2007;21(4): 245-249.
21. Howell D., Prestwich C., Laughlin E., Giga N. Enhancing the roles of case manager with specialty populations: Development and evaluation of a palliative care education program. Lippincotts Case Manag. 2004;9(4):166-174;quiz 175-176.
22. Hubble RA, Ward-Smith P., Christenson K., Hutto CJ, Korphage RM, Hubble CL Implementation of a palliative care team in a pediatric hospital. J Pediatr Health Care. 2009;23(2):126-131.
23. Duncan J., Spengler E., Wolfe J. Providing pediatric palliative care: PACT in action. Am J Matern Child Nurs. 2007;32(5):279-287.
24. Carroll JM, Santucci G., Kang TI, Feudtner C. Partners in pediatric palliative care: A program to enhance collaboration between hospital and community palliative care services. Am J Hosp Palliat Care. 2007;24(3):191-195.
25. Armstrong-Dailey A., Zarbock SF Hospice Care for Children. Oxford: Oxford University Press; 2009.
26. Sullivan AM, Lakoma MD, Billings JA, Peters AS, Block SD and the PCEP Core Faculty. Teaching and learning end-of-life care: Evaluation of a faculty development program in palliative care. Acad Med. 2005;80(7): 657-668.
27. Baker JN, Torkildson C., Baillargeon JG, Olney CA, Kane JR National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J Palliat Med. 2007; 10(2):420-429.
28. Hilden J., Emanuel E., Fairclough DL,et al.Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol. 2001;19(1):205-212.
29. McCabe ME, Hunt ME, Serwint EA Pediatric residents' clinical and educational experiences with end-of-life care. Pediatrics. 2008;121(4):e731-e737.
30. Dickinson G. Death education in U.S. Medical schools: 1975-1980. J Med Educ. 1981;56(2):111-114.
31. Schiffman JD, Chamberlain LJ, Palmer L., Contro N., Sourkes B., Sectish TC Introduction of a pediatric palliative care curriculum for pediatric residents. J Palliat Med. 2008;11(2):164-170.
32. Baughcum AE, Gerhardt CA, Young-Saleme T., Stefanik R., Klopfenstein KJ Evaluation of a pediatric palliative care educational workshop for oncology fellows. Pediatr Blood Cancer. 2007;49(2):154-159.
33. Gerhardt CA, Grollman JA, Baughcum AE, Young-Saleme T., Stefanik R., Klopfenstein KJ Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows. J Palliat Med. 2009;12(4): 323-328.
34. Serwint JR The use of standardized patients in pediatric residency training in palliative care: Anatomy of a standardized patient case scenario. J Palliat Med. 2002; 5(1):146-153.
35. Leuthner SR, Boldt AM, Kirby RS Where infants die: Examination of place of death and hospice/home health care options in the state of Wisconsin. J Palliat Med. 2004;7(2):269-277.
36. Feudtner C., Silveira MJ, Christakis DA Where do children with complex chronic conditions die? Patterns in Washington State, 1980-1998. Pediatrics. 2002;109(4): 656-660.
37. Martin JA, Kung HC, Mathews TJ Annual summary of vital statistics: 2006. Pediatrics. 2008;121(4):788-801.
38. Feudtner C., Hays RM, Haynes G., Geyer JR, Neff JM, Koepsell TD Deaths attributed to pediatric complex chronic conditions: National trends and implications for supportive care services. Pediatrics. 2001;107(6):E99.
39. Feudtner C., Christakis DA, Zimmerman FJ, Muldoon JH, Neff JM, Koepsell TD Characteristics of deaths occurring in children's hospitals: Implications for supportive care services. Pediatrics. 2002;109(5):887-893.
40. Feudtner C., DiGiuseppe DL, Neff JM Hospital care for children and young adults in the last year of life: A population-based study. BMC Med. 2003;1:3.
41. McClain BC, Kain ZN Pediatric palliative care: A novel approach to children with sickle cell disease. Pediatrics. 2007;119(3):612-614.
42. Field MJ, Behrman RE, eds. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: National Academy Press; 2003.
43. Murray S., Kendall M., Boyd K., Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498): 1007-1011.
44. Mack J., Wolfe J. Early integration of pediatric palliative care: For some children palliative care starts at diagnosis. Curr Opin Pediatr. 2006;18(1):10-14.
45. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics. 2000;106(2 pt 1): 351-357.
46. Children's Hospice International. Children's Hospice International Program for All-Inclusive Care for Children and their Families (CHI PACC®); 2009. http://www.chionline.org/programs/. Accessed January, 2009.
47. Children's International Project on Palliative/Hospice Services (ChIPPS). A call for change: Recommendations to improve the care of children living with life-threatening conditions. Alexandria, VA; 2001. http://www.nhpco.org/files/public/ChIPPSCallforChange.pdf/. Accessed May, 2009.