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V.  Special Populations
     C.  Pediatrics

Section Description: This section covers perinatal through young adults and includes City of Hope publications, recommended books, studies, informational articles, and pamphlets as well as policy statements from professional organizations on pediatric topics. Topics include pain & symptom management, palliative and hospice care, spirituality, ethics, advance directives, grief & bereavement. Additional sections include educational materials and related organizational links. Additional assessment tools for pediatrics can be found under the Research Instruments/Resources section.

       City of Hope Publications

  1. Cooke, L., Chung, C., & Grant, M. (2011). Psychosocial care for adolescent and young adult hematopoietic cell transplant patients. Journal of Psychosocial Oncology, 29(4), 394-414.
    DOI: 10.1080/07347332.2011.582636.
     
  2. Patel, S. K., Mullins, W., Turk, A., Dekel, N., Kinjo, C., & Sato, J. K. (2010). Distress screening, rater agreement, and services in pediatric oncology. Psycho-Oncology, EPub.
    DOI: 10.1002/pon.
     
  3. Landier, W., & Tse, A. M. (2010). Use of complementary and alternative medical interventions for the management of procedure-related pain, anxiety, and distress in pediatric oncology: An integrative review. Journal of Pediatric Nursing, 25(6), 566-579.        DOI: 10.1016/j.pedn.2010.01.009.
     
  4. Casillas, J., Kahn, K. L., Doose, M., Landier, W., Bhatia, S., Hernandez, J., & Zeltzer, L. K. (2010). Transitioning childhood cancer survivors to adult-centered healthcare: Insights from parents, adolescent, and young adult survivors. Psycho-Oncology, 19, 982-990. DOI: 10.1002/pon.1650.
     
  5. Harrington Jacobs, H., Ferrell, B. R., Virani, R., & Malloy, P. (2009). Appraisal of the pediatric end-of-life nursingeducation consortium training program. Journal of Pediatric Nursing, 24(3), 216-221.
    DOI: 10.1016/j.pedn.2008.03.001.
     
  6. Landier, W., & Bhatia, S. (2008). Cancer survivorship: A pediatric perspective. The Oncologist, 13, 1181-1192.   
    DOI: 10.1634/theoncologist.2008-0104. 
     

          
      Recommended Publications

  1. Life & Loss: A Guide to Help Grieving Children 
    -
      
    Goldman, L. (2013).  NY: Routledge   
    ISBN #: 
    978-0415630801.
     
  2. Wong’s Essentials of Pediatric Nursing, 9th Edition
    - 
    Hockenberry, M. M. & Wilson, D. (2012). PA: Mosby.  ISBN: 978-0323083430.
     
  3. Palliative and End of Life Care for Children and Young People: Home, Hospice, Hospital
    -
     Grinyer, A. (2012). NJ: Wiley-Blackwell.
    ISBN#: 978-0470656143.
     
  4. Lindley, L. C. (2011). Healthcare reform and concurrent curative care for terminally ill children: A policy analysis. Journal of Hospice and Palliative Nursing, 13(3), 81-88.
    DOI: 10.1097/NJH.0b013e318202e308.
     
  5. Cantrell, M. A. (2011). A narrative review summarizing the state of the evidence on the health-related quality of lifeamong childhood cancer survivors. Journal of Pediatric Oncology Nursing, 28(2), 75-82. DOI: 10.1177/1043454210377901.
     
  6. Fitchett, G., Lyndes, K. A., Cadge, W., Berlinger, N., Flanagan, E., & Misasi, J. (2011). The role of professional chaplains on pediatric palliative care teams: Perspectives from physicians and chaplains. Journal of Palliative Medicine, 14(6), 704-707.                           DOI: 10.1089/jpm.2010.0523.
     
  7. Anghelescu, D. L., Oaks, L. L., & Hankins, G. M. (2011). Treatment of pain in children after limb-sparing surgery: An institution’s 26-year experience Pain Management Nursing, 12(2), 82-94. DOI: 10.1016/j.pmn.2010.02.002.
     
  8. Puckey, M., & Bush, A. (2011). “Passage to paradise” ethics and end-of-life decisions in children. Paediatric Respiratory Reviews, 12, 139-143.
    DOI: 10.1016/j.prrv.2010.10.003.
     
  9. Rogers, S. K., Gomez, C. F., Carpenter, P., Farley, J., Holson, D., Markowitz, M., et al. (2011). Quality of life for children with life-limiting and life-threatening illnesses: Description and evaluation of a regional, collaborative model for pediatric palliative care. American Journal of Hospice & Palliative Medicine, 28(3), 161-170.
    DOI: 10.1177/1049909110380594. 
     
  10. Simpson, E. C. & Penrose, C. V. (2011). Compassionate extubation in children at hospice and home. International Journal of Palliative Nursing, 17(4), 164-169. 
     
  11. Griffiths, M., Schweitzer, R., & Yates, P. (2011). Childhood experiences of cancer: An interpretative phenomenological analysis approach. Journal of Pediatric Oncology Nursing, 28(2), 83-92. DOI: 10.1177/1043454210377902.
     
  12. Johnston, C. C., Fernandes, A. M., & Campbell-Yeo, M. (2011). Pain in neonates is different. Pain, 152, S65-S73.     DOI: 10.1016/j.pain.2010.10.008.
     
  13. Conte, T. M. (2011). Pediatric oncology nurse and grief education: A telephone survey. Journal of Pediatric Oncology Nursing, 28(2), 93-99.
    DOI: 10.1177/1043454210377900.
     
  14. Marcello, K. R., Stefano, J. L., Lampron, K., Barrington, K. J., Mackley, A. B., & Janvier, A. (2011). The influence of family characteristics on perinatal decision making. Pediatrics, 127, e934-e939.
    DOI: 10.1542/peds.2009-3010.
     
  15. Yeh, C. H., Wai, J. P. M., Lin U., Chiang, Y. (2011). A pilot study to examine the feasibility and effects of a home-based aerobic program on reducing fatigue in children with acute lymphoblastic leukemia. Cancer Nursing, 34(1), 3-12, 
    DOI: 10.1097/NCC.0b013e3181e4553c.
     
  16. O’Shea, E. R., Wallace, M., Griffin, M. Q., & Fitzpatrick, J. J. (2011). The effect of an educational session on pediatric nurses’ perspectives toward providing spiritual care. Journal of Pediatric Nursing, 26, 34-43. DOI: 10.1016/j.pedn.2009.07.009.
     
  17. Pousset, G., Bilsen, J., Cohen, J., Mortier, F., & Deliens, L. (2011). Continuous deep sedation at the end of life of children in Flanders, Belgium. Journal of Pain and Symptom Management, 41(2) 449-455. DOI: 10.1016/j.jpainsymman.2010.04.025.
     
  18. Wright, V., Prasun, M. A., Hilgenberg, C. (2011). Why is end-of-life care so sporadic: A quantitative look at the barriersto and facilitators of providing end-of-life care in the neonatal intensive care unit. Advances in Neonatal Care, 11(1), 29-36. DOI: 10.1097/ANC.0b013e3182085642.
     
  19. Kars, M. C., Grypdonck, M. H. F., de Korte-Verhoef, M. C., Kamps. W. A., Meijer-van den Bergh, E. M. M., Verkerk, M. A., & van Delden, J. J. M. (2011). Parental experience at the end-of-life in children with cancer: ‘Preservation’ and ‘letting go’ in relation to loss. Supportive Care in Cancer, 19, 27-35. DOI: 10.1007/s00520-009-0785-1.
     
  20. Textbook of Interdisciplinary Pediatric Palliative Care 
    - Wolfe, J., Hinds, P. S., Sourkes, B. M. (2011). Philadelphia, PA: Elsevier. ISBN: 978-1-4377-0262-0.
     
  21. A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief 
    - Kuebelbeck
    , A. & Davis, D. L. (2011). MD: The Johns Hopkins University Press. ISBN: 978-0801897627.  
     
  22. Foster, T. L., Lafond, D. A., Reggio, C., & Hinds, P. S. (2010). Pediatric palliative care in childhood cancer nursing: From diagnosis to cure or end of life. Seminars in Oncology Nursing, 26(4), 205-221. DOI:10.1016/j.soncn.2010.08.003.
     
  23. Veal, G. J., Hartford, C. M., & Steward, C. F. (2010). Clinical pharmacology in the adolescent oncology patient.Journal of Clinical Oncology, 28(32), 4790-4799. DOI: 10.1200/JCO.2010.28.3473.
     
  24. Kamper, R., Van Cleve, L., & Savedra, M. (2010). Children with advanced cancer: Responses to a spiritual quality of life interview. Journal for Specialists in Pediatric Nursing, 15(4), 301-306.
    DOI: 10.1111/j.1744-6155.2010.00253.x.
     
  25. Järvelä, L. S., Hiinikoski, H., Lähteenmäki. P. M., Heinonen, O. J., Kapanen, J., Arola, M., & Kemppainen, J. (2010). Physical activity and fitness in adolescent and young adult long-term survivors of childhood acute lymphoblastic leukaemia. Journal of Cancer Survivorship, 4, 339-345.
    DOI: 10.1007/s11764-010-0131-0.
     
  26. Dickens, D. S. (2010). Comparing pediatric deaths with and without hospice support. Pediatric Blood Cancer, 54, 746-750.         DOI: 10.1002/pbc.22413.
     
  27. Bluebond-Langner, M., Belasco, J. B., Wander, M. D. (2010). “I want to live, until I don’t want to live anymore”:Involving children with life-threatening and life-shortening illnesses in decision making about care and treatment.Nursing Clinics of North America, 45, 329-343. DOI: 10.1016/j.cnur.2010.03.004.
     
  28. Davies, B., Contro, N. Larson, J., & Widger, K. (2010). Culturally-sensitive information-sharing in pediatric palliative care. Pediatrics, 125(4), e859-e865. DOI: 10.1542/peds.2009-0722. 
     
  29. Rony, R. Y. Z., Fortier, M. A., Chorney, J. M., Perret, D., & Kain, Z. N. (2010). Parental postoperative pain management: Attitudes, assessment, and management. Pediatrics, 125(6), e1372-e1378.
    DOI: 10.1542/peds.2009-2632.
     
  30. Knapp, C. A., Madden, V. L., Curtis, C. M., Sloyer, P., & Shenkman, E. A. (2010). Family support in pediatric palliative care: How are families impacted by their children’s illnesses? Journal of Palliative Medicine, 13(4), 421-426.
    DOI: 10.1089=jpm.2009.0295.
     
  31. Dubois, A., Capdevila, X., Bringuier, S., & Pry, R. (2010). Pain expression in children with an intellectual disability.European Journal of Pain, 14, 654-660. DOI: 10.1016/j.ejpain.2009.10.013.
     
  32. Fraser, J., Harris, N., Berringer, A. J., Prescott, H., & Finlay, F. (2010). Advanced care planning in children with life-limiting conditions—the Wishes document Archives of Disease in Childhood, 95, 79-82. DOI: 10.1136/adc.2009.160051. 
     
  33. Connelly, M., & Neville, K. (2010). Comparative prospective evaluation of the responsiveness of single-item pediatric pain-intensity self-report scales and their uniqueness from negative affect in a hospital setting. The Journal of Pain, 11(12), 1451-1460.               DOI: 10.1016/j.jpain.2010.04.011.
     
  34. Shaikh, N., Kearney, D. H., Colborn, D. K., Balentine, T., Feng, W., Lin, Y., & Hoberman, A. (2010). How do parents of preverbal children with acute otitis media determine how much ear pain their child is having? The Journal of Pain, 11(12), 1291-1294.          
    DOI: 10.1016/j.jpain.2010.03.017.
     
  35. Ullrich, C. K., Dussel, V., Hilden, J. M., Sheaffer, J. W., Lehmann, L., & Wolfe, J. (2010). End-of-life experience ofchildren undergoing stem cell transplantation for malignancy: Parent and provider perspectives and patterns of care. Blood, 115(19), p. 3879-3885. DOI:  10.1182/blood-2009-10-250225.
     
  36. Christenson, K., Lybrand, S. A., Hubbard, C. R., Hubble, R. A., Ahsens, L., & Black, P. (2010). Including the perspective of the adolescent in palliative care preferences. Journal of Pediatric Health Care, 24(5), 286-291.
    DOI: 10.1016/j.pedhc.2009.07.001.
     
  37. Parvin, K. V., Dickinson, G. E. (2010). End-of-life issues in US child life specialist programs. Child Youth Care Forum, 39, 1-9.    
    DOI: 10.1007/s10566-009-9086-6.
     
  38. Freyer, D. R. (2010). Transition of care for young adult survivors of childhood and adolescent cancer: Rationale andapproaches. Journal of Clinical Oncology, 28(32), 4810-4818.
    DOI: 10.1200/JCO.2009.23.4278.
     
  39. Wein, S., Pery, S., & Zer, A. (2010). Role of palliative care in adolescent and young adult oncology. Journal of Clinical Oncology, 28(32), 4819-4824.
    DOI: 10.1200/JCO.2009.22.4543.
     
  40. National Association of Neonatal Nurses (NANN) Board of Directors (2010). Palliative care for newborns and infants: Position statement #3051. Advances in Neonatal Care, 10(6), 287-293. 
     
  41. Anghelescu, D. L., Gaughnan, L. G., Baker, J. N., Yang, J., & Kane, J. R. (2010). Use of epidural and peripheral nerve blocks at the end of life in children and young adults with cancer: The collaboration between a pain service and a palliative care service. Pediatric Anesthesia, 20, 1070-1077.
    DOI: 10.1111/j.1460-9592.2010.03449.x.
     
  42. Ullrich, C. K., Dussell, V., Hilden, J. M., Sheaffer, J. W., Moore, C. L., Berde, C. B. Wolfe, J. (2010). Fatigue in children with cancer at the end of life. Journal of Pain and Symptom Management, 40(4), 483-494.
    DOI: 10.1016/j.jpainsymman.2010.02.020.
     
  43. Kurashima, A. Y., Latorre, M. R. D. O., & de Camargo, B. (2010). A palliative prognostic score for terminally ill children and adolescents. Pediatric Blood Cancer, 55, 1167-1171. DOI: 10.1002/pbc.22644.
     
  44. Treadgold, C. L., & Kuperberg, A. (2010). Been there, done that, wrote the blog: The choices and challenges ofsupporting adolescents and young adults with cancer. Journal of Clinical Oncology, 28(32), 4842-4849. DOI: 10.1200/JCO.2009.23.0516.
     
  45. Hinds, P. S., & Kelly, K. P.  (2010). Helping parents make and survive end of life decisions for their seriously ill child. Nursing Clinics of North America, 45, 465-474. DOI: 10.1016/j.cnur.2010.03.006.
     
  46. McCarthy, M. C., Clarke, N. E., Ting, C. L., Conroy, R., Anderson, V. A., & Heath, J. A. (2010). Prevalence andpredictors of parental grief and depression after the death of a child from cancer. Journal of Palliative Medicine, 13(11), 1321-1326.
    DOI: 10.1089/jpm.2010.0037.
     
  47. Bash, R. (2010). When traditional medicine fails. International Journal of Pharmaceutical Compounding, 14(1), 6-8.
     
  48. Lindsay, J. (2010). Introducing nursing students to pediatric end-of-life issues using simulation. Dimensions of Critical Care Nursing, 29(4), 175-178. DOI: 10.1097/DCC.0b013e3181dea111.
     
  49. Kars, M. C., Grypdonck, M. H. F., Beishuizen, A., Meijer-van den Bergh, E. M. M., van Delden, J. J. M. (2010).Factors influencing parental readiness to let their child with cancer die. Pediatric Blood Cancer, 54, p. 1000-1008. DOI: 10.1002/pbc.22532.
     
  50. Swinton, C. H., & Lantos, J. D. (2010). Current empirical research in neonatal bioethics. Acta Paediatrica, 99, 1773-1781.           
    DOI: 10.1111/j.1651-2227.2010.01971.x.
     
  51. Ameringer, S. (2010). Barriers to pain management among adolescents with cancer. Pain Management Nursing, 11(4), 224-233.
    DOI: 10.1016/j.pmn.2009.05.006.
     
  52. Truog, R. D. (2010). Is it always wrong to perform futile CPR? The New England Journal of Medicine, 362(6), 477-479.
     
  53. Eden, L. M. & Callister, L. C. (2010). Parent involvement in end-of-life care and decision making in the newbornintensive care unit: An integrative review. The Journal of Perinatal Education, 19(1), 29-39. DOI: 10.1624/105812410X481546. 
     
  54. Lewandowski, A. S., Palermo, T. M., Stinson, J., Handley, S., & Chambers, C. T. (2010). Systematic review of family functioning in families of children and adolescents with chronic pain. The Journal of Pain, 11(11), 1027-1038. DOI: 10.1016/j.jpain.2010.04.005.
     
  55. Knapp, C. (2010). e-Health in pediatric palliative care. American Journal of Hospice & Palliative Medicine, 27(1), 66-73.  
    DOI: 10.1177/1049909109355596.
     
  56. Ladas, E. J., Rooney, D., Taromina, K., Ndao, D. H., & Kelly, K. M. (2010). The safety of acupuncture in children and adolescents with cancer therapy-related thrombocytopenia. Supportive Care in Cancer, 18, 1487-1490. DOI: 10.1007/s00520-010-0926-6.
     
  57. Oxford Textbook of Palliative Nursing, 4th Edition
      Ferrell, B. R., Coyle, N., & Paice, J.,  (2015). NY:
          Oxford University Press. ISBN: 9780199332342.

            Section VI: Pediatric Palliative Care
                        -Chapter 55: Symptom Management in
                           Pediatric Palliative Care
                              
                        -Chapter 56: Pediatric Hospice and Palliative
                           Care
                         
                         -Chapter 57: Pediatric Care: Transitioning
                            Goals of Care in the Emergency Department,    
                             Intensive Care Unit, and In Between

                         -Chapter 58: End-of-life Decision-Making in 
                             Pediatric Oncology
                         
                         -Chapter 59: Palliative Care in the Neonatal
                             Intensive Care Unit

                         -Chapter 60: Grief and Bereavement in
                            Pediatric Palliative Care

                         -Chapter 61: Pediatric Pain: Knowing the Child
                            Before You 
     
  58. Children With Cancer: A Comprehensive Reference Guide for Parents 
    - Bracken, J. M. (2010). NY: Oxford University Press.
       ISBN: 978-0195147391.
     
  59. Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, 3rd Edition
    -
      
    Kline, N. E., Hobbie, W. L., Hooke, M. D., Rodgers. C.
       & O’Brien Shea, J. (2010).  ISBN: 978-0966619331.
     
  60.  Zakak, N. N. (2009). Fertility issues of childhood cancer survivors: The role of the pediatric nurse practitioner in fertility preservation. Journal of Pediatric Oncology Nursing, 26(1), 48-59.
    DOI: 10.1177/1043454208323617.
     
  61. Knapp, C. A., Madden, V. L., Wang, H., Kassing, K., Curtis, C., Sloyer, P. J., & Shenkman, E. A. (2009). Effect of a pediatric palliative care program on nurses’ referral preferences. Journal of Palliative Medicine, 12(12), 1131-1136. 
    DOI: 10.1089=jpm.2009.0146. 
     
  62. Pediatric Hematology  Nursing: Scope & Standards of Practice
    -
     Hennessy, J. (2009). IL: Association of Pediatric Hematology/Oncology Nurses (APHON).   
     
  63. Kain, V., Gardner, G., & Yates, P. (2009). Neonatal palliative care attitude scale: Development of an instrument tomeasure the barriers to and facilitators of palliative care in neonatal nursing. Pediatrics, 123, 3207-e213. DOI: 10.1542/peds.2008-2774.
     
  64. Robinson, W. M. (2009). Palliative and end-of-life care in cystic fibrosis: What we know and what we need to know. Current Opinion in Pulmonary Medicine, 15, 621-625.
    DOI: 10.1097/MCP.Ob013e3283304c29.
     
  65. Zinner, S. E. (2009). The use of pediatric advance directives: A tool for palliative care physicians. American Journal of Hospice and Palliative Medicine, 25(6), 427-430.
    DOI: 10.1177/1049909108322294.
     
  66. Lemmens, C. (2009). End-of-life decisions and minors: Do minors have the right to refuse life-reserving medical treatment? A comparative study. Medicine and Law, 28, 479-497. 
     
  67. Lyon, M. E., Garvie, P. A., McCarter, R., Briggs, L, He, J., & D’Angelo, L. J. (2009). Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics, 123, e199-e206. DOI: 10.1542/peds.2008-2379.
     
  68. Schiff, D., Klin, C., Meltzer, H., Auger, J. (2009). Palliative ventriculoperitoneal shunt in a pediatric patient with recurrent metastatic medulloblastoma. Journal of Palliative Medicine, 12(4), 391-393. DOI: 10.1089=jpm.2008.0227.
     
  69. Dussell, V., Kreicbergs, U., Hilden , J. M., Watterson, J., Moore, C., Turner, B. G., et al. (2009). Looking beyond where children die: Determinants and effects of planning a child’s location of death. Journal of Pain and Symptom Management, 37(1), 33-43.
    DOI: 10.1016/j.jpainsymman.2007.12.017.
     
  70. deLisle-Porter, M., Podruchny, A. M. (2009). The dying neonate: Family-centered end-of-life care. Neonatal Network, 28(2), 75-83. 
     
  71. Knapp, C., Madden, V., Want, H., Curtis, C., Sloyer, P, & Shenkman, E. (2009). Music therapy in an integrated pediatric palliative care program. American Journal of Hospice & Palliative Medicine, 26(6), 449-455. DOI: 10.1177/1049909109341870.
     
  72. Michelson, K. N., Koogler, T., Sullivan, C., del Pilar Orgega, M., Hall, E., Frader, J. (2009). Parental views onwithdrawing life-sustaining therapies in critically ill children. JAMA Pediatrics, Formerly Archives of Pediatric Adolescent Medicine, 163(11), 986-992. DOI: 10.1001/archpediatrics.2009.180.
     
  73. Whittey-Rogers, J., Alex, M., MacDonald, C., Gallant, D. P., & Austin, W. (2009). Working with children in end-of-life decision making. Nursing Ethics, 16(6), 743-758. DOI: 10.1177/0969733009341910.
     
  74. Olsen, P. R., (2009). Keeping their world together—meanings and actions created through network-focused nursing in teenager and young adult cancer care. Cancer Nursing, 32(6), 494-502.
    DOI: 10.1097/NCC.0b013e3181b3857e.
     
  75. Williamson, A., Devereux, C., & Shirtliffe, J. (2009). Development of a care pathway for babies being discharged from a level 3 neonatal intensive care unit to a community setting for end-of-life care. Journal of Neonatal Nursing, 15, 164-168.                          DOI: 10.1016/j.jnn.2009.07.004.
     
  76. Armentrout, D. (2009). Living with grief following removal of infant life support: Parents’ perspectives Critical Care Nursing Clinics of North America, 21, 253-265.
    DOI: 10.1016/j.ccell.2009.01.003.
     
  77. Palliative Care for Children and Families: An Interdisciplinary Approach 
    - Price, J., & McNeilly, P. (2009). UK: Palgrave
       McMillian. ISBN #: 0230200028.
     
     
  78. Baker, J. N., Hinds, P. S., Spunt, S. L., Cargield, R. C., Allen, C., Powell, B. C., et al. (2008). Integration of palliative care principles into the ongoing care of children with cancer: Individualized care planning and coordination. Pediatric Clinics of North America, 55(1), p. 223-xii. DOI:10.1016/j.pcl.2007.10.011.
     
  79. Jones, B. L., Parker-Raley, J., Higgerson, R., Christie, L. M., Legett, S., & Greathouse, J. (2008). Finding the right words: Using the terms Allow Natural Death (AND) and Do Not Resuscitate (DNR) in pediatric palliative care. Journal for Healthcare Quality, 30(5), 55-63. DOI: 10.1016/j.jpainsymman.2009.02.223.
     
  80. Maxton, F. J. C. (2008). Parental presence during resuscitation in the PICU: The parents’ experience. Journal of Clinical Nursing, 17, 3168-3176. DOI: 10.1111/j.1365-2702.2008.02525.x.
     
  81. Linton, J. M., & Feudtner, C. (2008). What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms. Pediatrics, 122, 574-582. DOI: 10.1542/peds.2007-3042.
     
  82. Wolfe, J., Hammel, J. F., Edwards, K. E., Duncan, J., Comeau, M., Breyer, J., et al. (2008). Easing suffering in children with cancer at the end of life: Is care changing? Journal of Clinical Oncology, 26(10), 1717-1723. DOI: 10.1200/JCO.2007.14.0277.
     
  83. Ross, M. E., Hicks, J., & Furman, W. L. (2008). Preschool as palliative care. Journal of Clinical Oncology, 26(22), 3797-3799.      
    DOI: 10.1200/JCO.2007.16.0119.
     
  84. Duggal, S., Farah, P., Straatman, L. P., Freeman, L., & Dickson, S. (2008). The volunteer program in a children’s hospice. Journal of Palliative Medicine, 11(7), 997-1001. DOI: 10.1089/jpm.2007.0257. 
     
  85. Epstein, E. G. (2008). End-of-life experiences of nurses and physicians in the newborn intensive care unit. Journal of Perinatology, 28, 771-778. 
     
  86. Welch, S. B. (2008). Can the death of a child be good? Journal of Pediatric Nursing, 23(2), p. 120-125. 
    DOI: 10.1016/j.pedn.2007.08.015.
     
  87. Hospice Care For Children, 3rd Edition
    Armstrong-Dailey, A., & Zarbock, S. (2008). NY: Oxford University Press. ISBN #: 0195340701.
     
  88. Empty Arms: Coping After Miscarriage, Stillbirth and Infant Death  Ilse, S. (2008). MN: Wintergreen Press. ISBN: 978-0960945665. 
     
  89. Living with Grief: Children and Adolescents
    -
     Doka, K. (2008). DC: Hospice Foundation of
      America. ISBN #: 978-1-893349-09-4.
     

         
      Educational Materials/Curriculum

  1. APHON’s Foundations of Pediatric Hematology/Oncology Nursing: A Comprehensive Orientation & Review Course 
    -
     This course is designed to provide participants with
       an overview of nursing issues involved in caring for
       children and adolescents with cancer and blood
       diseases.  A course evaluation form and posttest are
       provided to assist in measuring the effectiveness of
       the program.
     
  2. Children’s Cancer Pain Can Be Relieved, A Guide for Parents and Families - The Resource Center
    - 
    A 12 page booklet in Q&A format. 
     
  3. NHCPO Standards for Pediatric Palliative and Hospice Care for America's Children  - National Hospice and Palliative Care Organization  
    - The standards set clinical and organizational
       precedence for hospice and palliative care programs
       providing care to infants, children, adolescents, and
       their families in the home, hospital, and other
       settings. These standards can be used to create a
       template for organizational best practice and to
       provide safe, effective, high-quality care for children
       and their families facing life-threatening illness.            
     
  4. Essentials of Pediatric Oncology Nursing: A Core Curriculum, 3rd Edition - Association of Pediatric Hematology/Oncology Nurses (APHON)
    - 
    Written and edited by the top experts in the field of
       pediatric hematology/oncology nursing, the core
       curriculum covers every component of the job.

     
  5. Fast Facts and Concepts - Palliative Care Network of Wisconsin (PCNOW)
    Over 200 Fast Facts.  There is also a PDA version and a Discussion Blog 
    - Grief in Children and Developmental Concepts of   
       Death  #138
    - Pediatric Pain Assessment Scales  #117

     
  6. The Initiative for Pediatric Palliative Care  (IPPC) 
    IPPC curriculum materials are available—free of charge—through their website.  The modules are designed to facilitate individual clinician learning and strengthen an institution’s programs and services.  The six modules include: Engaging with Children and Families; Relieving Pain and Other Symptoms; Analyzing Ethical Challenges in Pediatric End-of-Life Decision Making; Responding to Suffering and Bereavement; Improving Communication and Strengthening Relationships; and Establishing Continuity of Care.    
     
     
  7.  A Lion in the House -  LION                     
    Educational DVD modules based on expanded stories from A Lion in the House documentary film. The real-life intimate case studies serve as conversational starters to assist health care professionals and students to sensitively explore issues of childhood and young adult cancer. The seven modules include: Nurse-Patient-Family Relationships, Pediatric End-of-Life Case Studies, Siblings Stories,  Disparities, Spirituality and Childhood Cancer, Childhood Cancer and School Issues, and Childhood Cancer Survivorship Stories.  
     
  8. Capturing a Short Life
    Capturing a Short Life is a beautiful, intimate and life-affirming documentary about families dealing with infant loss. It explores how critical it is to remember and celebrate the beautiful babies who are only with us for a moment, and how impossible it is to forget them.
     
  9. Health Facts for You - UW Health, University of Wisconsin Hospital & Clinics, Madison, WI
    -
          Pediatrics, Parenting  
    -      EMLA Cream (for needle sticks)
    -      Intranasal Analgesia Prior to Insertion of
           Nasogastric Tube 
    -      Sucrose Analgesia for Infants 

    -        Topical Lidocaine – L.M.X.4  
    -      Where do you hurt? ¿Donde le duele?  
     
  10. Pain of Circumcision and Pain Control - Circumcision Information and Resource Pages (CIRP)
    This website indexes material on the pain of neonatal male circumcision, its effects, and attempts to control circumcision pain.
               
  11. Pediatric Pain & Symptom Management Algorithms for Palliative Care
     A pocket-sized book that has dozens of symptom management algorithms for hospice and palliative care.  This is a book with core information needed for medical professionals working with pediatric hospice, home care, palliative care resource teams, oncology services, and long-term care facilities.
     

       Guidelines/Clinical Pathways

  1. CRIES Tool - Judy Bildner, University Hospital & Clinics, Children’s Hospital, Columbia, MO
    Behavioral assessment tool for pain in neonates.  Includes self-learning module and documentation forms. 
     
  2. FLACC Scale (Face, Legs, Activity, Cry, Consolability) - CS Mott Children’s Hospital, University of Michigan Medical Center
    Behavior assessment scale for use in non-verbal children or others unable to provide reports of pain.  Reliability and validity information provided.   
     
  3. Neonatal Pain, Agitation, & Sedation Scale (N-PASS) - Hummel & Puchalski
    The N-PASS is a valid and reliable clinical pain/agitation and sedation tool for neonates. Nurses find the N-PASS easy to use clinically, facilitating documentation and management of pain and sedation.
     
  4. Pediatric Clinical Practice Guidelines & Policies Book/CD Set, 13th Edition - American Academy of Pediatrics
    A compendium of evidence based research for pediatric practice.  
     
  5. Pediatric Nurses’ Knowledge and Attitudes Survey Regarding Pain –  © Manworren
    Instrument to access pediatric nurses’ knowledge and attitudes regarding pain in children. Answer key also provided. 
     
  6. Pediatric Nurses Knowledge and Attitudes Survey (PNKAS) – © Manworren and Shriners Hospitals
    The PNKAS survey pertains to pediatric pain in burns, orthopedics and spinal cord injuries.
     Answer key also provided.      
     
  7. Paediatric Pain Profile - Institute of Child Health, University College, London and Royal College of Nursing Institute
    The Paediatric Pain Profile (PPP) is a behaviour rating scale for assessing pain in children with severe physical and learning impairments.
     
  8. Pediatric Palliative & End-of-Life Care Resource
    This valuable resource is the product of a partnership between APHON and the Children's Oncology Group Nursing Discipline and provides important information for pediatric hematology/oncology nurses who are caring for critically and terminally ill children.  
     
  9. Wong-Baker FACES Pain Rating Scale                        
              -  
         Wong-Baker Reference Manual

        
      Other Organizations Links

         American Academy of Pediatrics

         Association of Pediatric Hematology/ Oncology Nurses
      
(APHON)

         Association of Pediatric Oncology Social Workers 

         Bandaides & Blackboards   
         Child & Adolescent Health (AHRQ)  

         Children's Hospice International

         Compassion Books for Children

         Compassionate Friends: Supporting Family After a
       Child Dies

         CureSearch for Children's Cancer  
         Cure SMA (Spinal Muscular Atrophy)  
         End-of-Life Care for Children with Terminal Illness  
         End of Life Nursing Education Consortium (ELNEC)  

         Griefnet.org

         Initiative for Pediatric Palliative Care  

         International Children's Palliative Care Network

         Kidsaid - 2 Kids, 4 Kids, By Kids       
         Liam's Foundation for Pediatric Palliative Care

         Loving Touch (Infant Massage)  

         Make a Wish Foundation

         MISS Foundation

         National Children's Cancer Society  

         National Hospice and Palliative Care Organization 
      (NHPCO)
        
 Pediatric Hospice
        Concurrent Care for Children
       
Requirement: 
Implementation Toolkit

         Organ Procurement and Transplantation Network 

         Pediatric Art Therapy for Children with
        Cancer
     
 

         Post Pals 

         SHARE Pregnancy and Infant Loss Support, Inc.  
         What Is Pediatric Palliative Care?    

       Position Statements/Standards

  1. American Academy of Pediatrics (AAP) Position Statements 
    -
     Circumcision Policy Statement  
    Policy Statement regarding giving a child procedural analgesia (EMLA cream) before performing a circumcision procedure. 
     
    - Palliative Care for Children

    This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition.
     -
      Prevention and Management of Pain in the Neonate: An Update 

    The objectives of this statement are to increase awareness that neonates experience pain; provide a physiological basis for neonatal pain and stress assessment and management by health care professionals; make recommendations for reduced exposure of the neonate to noxious stimuli and to minimize associated adverse outcomes; and recommend effective and safe interventions that relieve pain and stress.           
     
  2. American College of Emergency Physicians (ACEP) Policy Statements
    Guidelines for Care of Children in the Emergency Department 
    - Sedation and Analgesia (Pediatric - Pharmacologic Agents)                      
     
  3. American Society of Pain Management Nurses (ASPMN)
    Male Infant Circumcision Pain Management - The ASPMN opposes the participation of nurses and other healthcare professionals in the performance of male neonatal circumcision without an anesthetic to treat the pain inherent in the procedure.               

 
                                     (Also see materials in Pain Assessment Tools and Other Resources)

 

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