Nursing Staff’s Perception of Barriers in Providing End-of-Life Care to Terminally Ill Pediatric Patients in Southeast Iran

Abstract

Objective:

To determine pediatric nurses’ perceptions of intensity, frequency occurrence, and magnitude score of selected barriers in providing pediatric end-of-life (EOL) care.

Method:

A translated modified version of National Survey of critical care Nurses’ s Regarding End-of-Life Care questionnaire was used to assess 151 nurses’ perceptions of intensity and frequency occurrence of barriers in caring for dying children.

Results:

The highest/lowest perceived barriers magnitude scores were “families not accepting poor child prognosis” (5.04) and “continuing to provide advanced treatment to dying child because of financial benefits to the hospital” (2.19).

Conclusion:

More high perceived barriers by nurses were family-related issues. One of the possible causes of such deficiencies was lack of palliative care (PC) education/PC units in Iran. Thus, developing EOL/PC education may enhance nurses’ knowledge/skill to face EOL care challenges.

Keywords

nurses’ perception barriers end-of-life care terminally ill children Southeast Iran

Get full access to this article

View all access options for this article.

References

Kyle

Carman

, eds. Essential of Pediatric Nursing. Philadelphia, PA: Lippincott Williams & Wilkins; 2013:366.

Morgan

. Caring for dying children: assessing the needs of the pediatric palliative care nurse. Pediatr Nurs. 2009;35(2):86–90. Web site. www.ncbi.nlm.nih.gov/pubmed/19472671. Published March 2009. Accessed March 2014.

Hockenberry

Wilson

, eds. Wong’s Essential of Pediatric Nursing. St Louis, Mosby Elsevier; 2009. p593.

Heron

Hoyert

Murphy

Kochanek

Tejada-Vera

. Deaths: Final Data for 2006. National Vital Statistics Reports, 57, 14. National Center for Health Statistics. 2009. Web site. www.cdc.gov/nchs/data/nvsr/nvsr57/nvsr57_14.pdf.Published 17 April 2006. Accessed February 2014.

Meyer

Ritholz

Burns

Robert

. Improving the quality of end of life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics. 2006;117(3):649. doi: 10.1542/peds.2005-0144.

Brandon

Docherty

Thorpe

. Infant and child deaths in acute care settings: Implications for palliative care. J Palliat Med. 2007;10(4):910–918. Web site. http://dx.doi.org/10.1089/jpm.2006.0236. (PMID: 17803413 [PubMed - indexed for MEDLINE]). Published August 2006. Accessed June 2014.

Crozier

Hancock

. Pediatric Palliative Care: Beyond the End of Life. Pediatric Nursing. 2012;38(4). Web site. www.ncbi.nlm.nih.gov/pubmed/22970486. Accessed May 2013.

Beckstrand

Callister

Kirchhoff

. providing a “good death”: Critical care nurses’ suggestions for improving end-of-life care. Am J Crit Care. 2006;15(1):38–45. Web site. www.ncbi.nlm.nih.gov/pubmed/16391313. Published January 2006. Accessed March 2014.

Devictor

Latour

Tissieres

. Forgoing life-sustaining or death- prolonging therapy in the pediatric ICU. Pediatr Clin North Am. 2008;55(3):791–804. doi:10.1016/j.pcl.2008.02.008.

10.

Wiener

McConnell

Latella

Ludi

. Cultural and religious considerations in pediatric palliative care. Palliat Support Care. 2013;11(1):47–67. doi: 10.1017/S1478951511001027.

11.

Flood

. Caring for the child with palliative care needs. In: Moyra

A Baldwin

Woodhouse

Jan

, eds. Key Concepts in Palliative Care. London: SAGE Publications Ltd; 2011:22.

12.

World Health Organization. WHO Definition of Palliative Care. 2010. Web site. http://www.who.int/cancer/palliative/definition/en. Accessed June 2014.

13.

Davies

Sehring

Partridge

. Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics. 2008;121(2):282. doi: 10.1542/peds.2006-3153.

14.

Beckstrand

Rawl

Calliste

Mandleco

. Pediatric Nurses’ Perceptions of Obstacles and Supportive Behaviors in End-of-Life. Am J Crit Care. 2010;19(6):543–552. doi: 10.4037/ajcc200949.

15.

Gehan EL Nabawy

Ahmed Moawad

. Nurses’ perception of obstacles and supportive behaviors in providing end of life care to critically ill pediatric patients. J Biol Agriculture Healthcare. 2013;3(2):96–105. Web site. www.iiste.org/Journals/index.php/JBAH/article/view/4302. Accessed May, 2014.

16.

Iglesias

MEL

Pascual

Ricardo Becerro

De Bengoa Vallejo

. Obstacles and helpful behaviors in providing end-of-life care to dying patients in intensive care units. Dimens Crit Care Nurs. 2013;32(2):99–106. doi: 10.1097/DCC.0b013e3181f0c43.

17.

Edalati

Hooshmand Abarkouhye

. Death in Iranian culture (A Case Study of Abarkouh, Yazd). IRSSH. 2012;2(2):200–202. Website. Irssh.com/yahoo_site_admin/assets/docs/22_IRSSH-199-V2N2.9010345.pdf. Accessed November 8, 2011.

18.

Cultural Approaches to Pediatric Palliative Care in Central Massachusetts. Web site. http://libraryguides.umassmed.edu/diversity_guide. Accessed June, 2014.

19.

Eslami Nodooshan

. Love, life and death in Rumi’s view. Hasti. 2007;7(25):83–95.

20.

Sanati

. Black aesthetics: fear of death and Iranian art. Ketab e Mah e Honar; 2005; 7(75, 76):27–48.

21.

Web site. kirpalsingh.org/Booklets/DeathandDyingrevised.pdf. Accessed June 2014.

22.

Valentine

Jason John

Rice

. The Business Year 2013: Iran. London, U.K.: The Business Year; 2013:156. ISBN 978-1-908180-11-7.

23.

Mehrdad

. Health System in Iran. JMAJ. 2009;52(1):69–73. Web site. www.med.or.jp/english/pdf/2009_01/069_073.pdf. Published February 2009. Accessed May 2014.

24.

Nojomi

Naserbakhat

Ramezany

Anbary

. Under-5 year mortality: result of in-hospital study, Tehran, Iran. Acta Med Iran. 2009;47(4). Web site. acta.tums.ac.ir/index.php/acta/article/viewFile/3636/3320.

25.

Bagheri Lankarani

Alavian

Peymani

. Health in the Islamic Republic of Iran, challenges and progresses. MJIRI. 2013;27(1):42–49. Web site. http://mjiri.tums.ac.ir.

26.

World Health Organization country health profile of Iran (Islamic Republic of). Web site. www.who.int/country/irn/en2012. Accessed June 2014.

27.

“IRAN: Healthcare and Pharmaceuticals Forecast”. Economist Intelligence Unit. August 2008. Web site. news.alacrastore.com/eiu…/Iran-Healthcare-and-pharmaceuticals-forecast. Accessed February 2014.

28.

Web site. Payvand.com. 2009. Accessed February 2012.

29.

Asaei

. UNICEF Iran’s specialist for early childhood development. Web site. www.unicef.org/iran/media_4427.html. Accessed May 2014.

30.

Web site. Press TV. 2011. Accessed February 2012.

31.

Web site. www.who.int/country/irn/en.2012.Accessed June 2014.

32.

Web site. www.penous.com/News/print/323/. Accessed June 2014.

33.

Webster

Lacey

Quine

. Palliative care: a public health priority in developing countries. J Public Health Policy. 2007;28(1):28–39. Web site. www.ncbi.nlm.nih.gov/pubmed/17363933. doi: 10.1057/palgrave.jphp3200097.

34.

Asadi-Lari

Madjd Z

Akbari

. The need for palliative care services in Iran; an introductory Iranian Journal of Cancer Prevention. 2008;1(1):1–5. Web site. journals.sbmu.ac.ir/index.php/cp/article/view/3109. Published January 2008. Accessed January 2013.

35.

Iranmanesh

Razban

Tirgary

Ghazanfari

. Nurses’ knowledge about palliative care in Southeast Iran. Palliate Support Care. 2014;12(3):203–210. doi: 10.1017/S1478951512001058.

36.

Kirchhoff

Beckstrand

. Critical care nurses’ perceptions of obstacles and helpful behaviors in providing end-of-life care to dying patients. Am J Crit Care. 2000;9(2):96–105. Web site. www.ncbi.nlm.nih.gov/pubmed/10705423. Accessed June 2013.

37.

Beckstrand

Kirchhoff

. Providing end-of-life care to patients: Critical care nurses’ perceived obstacles and supportive behaviors. Am J Crit Care. 2005;14(5):395–403. Web site. ajcc.aacnjournals.org/content/14/5/395.full. (PMID: 16120891 [PubMed - indexed for MEDLINE]). Published September 2005. Accessed February 2014.

38.

Nelson

. Identifying and overcoming the barriers to high-quality palliative care in the intensive care unit. Crit Care Med. 2006;34(11 suppl):S324–S331. doi: 10.1097/01.CCM.0000237249.39179.B1.

39.

Rowse

. Palliative care for children: a public health initiative. Pediatr Nurs. 2006;18(4):41–45. Web site. www.ncbi.nlm.nih.gov/pubmed/16719043. Accessed May 2006.

40.

Silbermann

Khleif

Tuncer

. Can we overcome the effect of conflicts in rendering palliative care? Curr Top Oncol. 2011;13(4):302–307. doi: 10.1007/s11912-011-0174-z.

41.

Bennett

. A guide to end of life care: care of children and young people before death, at the time of death and after death. 2012. P14. Web site. www.togetherforshortlives.org.uk/…A_Guide_to_End_of_Life_Care_5… Accessed July 2014.

42.

Ott

Al-Khadhiri

Al-Junaibi

. Preventing ethical dilemmas: the Muslim people. Pediatr Nurs. 2003;29(3):227–330. Web site. www.medscape.com > Pediatric Nursing. (PMID: 12837004 [PubMed - indexed for MEDLINE]). Published May/June 2003. Accessed May 2013.

43.

Larson

Tobin

. End-of-life conversations: evolving practice and theory. J Am Med Assoc. 2000;284(12):1573–1578. Web site. jama.jamanetwork.com/article.aspx?articleid=193119. doi:10.1001/jama.284.12.1573.

44.

Graham

Robinson

. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr. 2005;26(5):361–365. Web site. www.ncbi.nlm.nih.gov/pubmed/16222176. doi: 10.1097/00004703-200510000-00004.

45.

Crump

Schaffer

Schulte

. Critical care nurses’ perceptions of obstacles, supports, and knowledge needed in providing quality end-of-life care. Dimens Crit Care Nurs. 2010;29(6):297–306. doi: 10.1097/DCC.0b013e3181f0c43c.

46.

Sourkes

Frankel

Brown

. Food, toys, and love: pediatric palliative care. Curr Probl Pediatr Adolesc Health Care. 2005;35(9):350–386. Web site. www.ncbi.nlm.nih.gov/pubmed/16301200. doi:10.1016/j.cppeds.2005.09.002.

47.

Abedi

. Palliative care within the Iranian context: re-defining palliative care, deploying spirituality as a support measure and need for cultural sensitivity. 2012. Web site. www.interdisciplinary.net/wpcontent/…/2012/02/abedisppaper.Pdf. Accessed June 2014.

48.

Steinberg

. Cultural and religious aspects of palliative care. Int J Crit Illn Inj Sci. 2011;1(2):154–156. doi: 10.4103/2229-5151.84804.

49.

Mobasher

Aramesh

Zahedi

Nakhaee

Tahmasebi

Larijani

. End-of-Life care ethical decision making: Shiite scholar views. J Med Ethics Hist Med. 2014;7:2. Web site. knrc.ac.ir/upload…/DR.Nakhaei_CV_0_15575. Published 14 January, 2014. Accessed June 2014.

50.

Atashzadeh Shorideh

Ashktorab

Yaghmaei

. Iranian intensive care unit Nurses’ moral distress: a content analysis. Nurs Ethics. 2012;19(4):464–478. doi: 10.1177/0969733012437988.

51.

Mogadasian

Abdollahzadeh

Rahmani

. The attitudes of Iranian nurses about do not resuscitate orders. Indian J Palliat Care. 2014;20(1):21–25. doi: 10.4103/0973-1075.125550.

52.

Hedayat

Pirzadeh

. Issues in Islamic biomedical ethics: a primer for the pediatrician. Pediatrics. 2001;108(4):965. Web site. pediatrics.aappublications.org/content/108/4/965.short. doi: 10.1542/peds.108.4.965

53.

Da Costa

D E

Ghazal

Al Khusaiby

. Do not resuscitate orders and ethical decisions in a neonatal intensive care unit in a Muslim community. Arch Dis Child Fetal Neonatal Ed. 2002;86(2):F115–F119. doi: 10.1136/fn.86.2.F115.

54.

Beckstrand

Smith

Heaston

Bond

. Emergency nurses’ perceptions of size, frequency, and magnitude of obstacles and supportive behaviors in end-of-life care. J Emerg Nurs. 2008;34(4):290–300. Web site. http://dx.doi.org/10.1016/j.jen.2007.09.004. doi: 10.1016/j.jen.2007.09.004.

55.

Gross

. End-of-life care obstacles and facilitators in the critical care units of a community hospital. J Hospice Palliat Nurs. 2006;8(2):92–102. Web site. journals.lww.com > Home > March/April 2006. doi: 10.1097/00129191-200603000-00013

56.

Asadi-Lari1

Madjd

Goushegir

. Gaps in the provision of spiritual care for terminally ill patients in Islamic societies - a systematic review. Adv Pall Med. 2008;7(2):73–80. Web site. czasopisma.viamedica.pl/apm/article/download/29426/24182. Accessed May 2014.

57.

Maxwell

Stuenkel

Saylor

. Needs of family members of critically ill patients: A comparison of nurse and family perceptions. Heart Lung. 2007;36(5):367–376. Web site. www.ncbi.nlm.nih.gov/pubmed/17845883. doi:10.1016/j.hrtlng.2007.02.005