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
-
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.
-
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.
-
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.
-
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.
- 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.
-
Landier, W., & Bhatia, S. (2008). Cancer
survivorship: A pediatric perspective. The
Oncologist, 13, 1181-1192.
DOI: 10.1634/theoncologist.2008-0104.
Recommended Publications
-
Life & Loss: A Guide to Help Grieving Children
- Goldman,
L. (2013). NY: Routledge
ISBN
#: 978-0415630801.
-
Wong’s Essentials of Pediatric Nursing, 9th Edition
- Hockenberry,
M. M. & Wilson, D.
(2012).
PA: Mosby. ISBN: 978-0323083430.
-
Palliative and End of Life Care for Children and Young People:
Home, Hospice, Hospital
- Grinyer,
A. (2012). NJ: Wiley-Blackwell.
ISBN#: 978-0470656143.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Simpson, E. C. & Penrose, C. V. (2011). Compassionate
extubation in children at hospice and home. International
Journal of Palliative Nursing, 17(4), 164-169.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Textbook of Interdisciplinary Pediatric Palliative Care
- Wolfe, J., Hinds, P. S., Sourkes, B. M. (2011). Philadelphia,
PA: Elsevier. ISBN: 978-1-4377-0262-0.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Dickens, D. S. (2010). Comparing
pediatric deaths with and without hospice support. Pediatric
Blood Cancer, 54, 746-750. DOI: 10.1002/pbc.22413.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Bash, R. (2010). When
traditional medicine fails. International
Journal of Pharmaceutical Compounding, 14(1), 6-8.
-
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.
-
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.
-
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.
-
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.
-
Truog, R. D. (2010). Is
it always wrong to perform futile CPR? The
New England Journal of Medicine, 362(6), 477-479.
-
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.
-
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.
-
Knapp, C. (2010). e-Health
in pediatric palliative care. American
Journal of Hospice & Palliative Medicine, 27(1), 66-73.
DOI: 10.1177/1049909109355596.
-
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.
-
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
-
Children With Cancer: A Comprehensive Reference Guide for
Parents
Bracken, J. M. (2010). NY: Oxford University Press. ISBN:
978-0195147391.
-
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.
-
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.
-
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.
-
Pediatric Hematology Nursing: Scope & Standards of Practice
Hennessy,
J. (2009). IL: Association of Pediatric Hematology/Oncology
Nurses (APHON).
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
deLisle-Porter, M., Podruchny, A. M. (2009). The
dying neonate: Family-centered end-of-life care. Neonatal
Network, 28(2), 75-83.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Palliative Care for Children and Families: An Interdisciplinary
Approach
Price, J., & McNeilly, P. (2009). UK: Palgrave
McMillian. ISBN
#: 0230200028.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Epstein, E. G. (2008). End-of-life
experiences of nurses and physicians in the newborn intensive
care unit. Journal
of Perinatology, 28, 771-778.
-
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.
-
Hospice Care For Children, 3rd Edition
Armstrong-Dailey, A., & Zarbock, S. (2008). NY: Oxford
University Press.
ISBN #: 0195340701.
-
Empty Arms: Coping After Miscarriage, Stillbirth and Infant
Death
Ilse, S. (2008). MN: Wintergreen Press.
ISBN: 978-0960945665.
-
Living with Grief: Children and Adolescents
Doka,
K. (2008). DC: Hospice Foundation of
America. ISBN #:
978-1-893349-09-4.
Educational Materials/Curriculum
-
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.
-
Children’s Cancer Pain Can Be Relieved, A Guide for Parents and
Families - The
Resource Center
- A
12 page booklet in Q&A format.
-
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.
-
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.
-
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
-
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.
- 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.
-
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.
-
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?
-
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.
-
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
-
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.
-
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.
-
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.
-
Pediatric Clinical Practice Guidelines & Policies Book/CD Set,
13th Edition
- American Academy of Pediatrics
A compendium of evidence based research for pediatric practice.
-
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.
-
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.
-
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.
-
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.
-
Wong-Baker FACES Pain Rating Scale
- Wong-Baker
Reference Manual
Other Organizations Links
Position Statements/Standards
-
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.
-
American College of Emergency Physicians (ACEP) Policy
Statements
- Guidelines
for Care of Children in the Emergency
Department
- Sedation
and Analgesia (Pediatric - Pharmacologic
Agents)
-
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)