Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim:
The aim of this review is to explore the experiences of healthcare professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources:
Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design:
This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results:
The 16 qualitative, 6 quantitative and 8 mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies and key approaches to help support staff in their role.
Conclusion:
Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing, are key strategies for improving healthcare staff’s experiences, and as such the quality of care they provide.
Melin-JohanssonCAxelssonIGrundbergMJ. When a child dies: parents’ experiences of palliative care – an integrative literature review. J Pediatr Nur2014; 29: 660–669.
2.
WolfeIMacfarlaneADonkinA. Why children die: death in infants, children and young people in the UK. London: Royal College of Paediatrics and Child Health, 2014.
3.
FerlayJBrayFPisaniP. GLOBOCAN 2002: cancer incidence, mortality and prevalence worldwide (IARC Cancer Base No. 5, version 2.0). Lyon: IARC, 2004.
4.
FeudtnerCKangTIHexemKR. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics2011; 127(6): 1094–1101.
5.
SwinneyRYinLLeeA. The role of support staff in pediatric palliative care: their perceptions, training, and available resources. J Palliat Care2007; 23: 44–50.
6.
BartholdsonCLützénKBlomgrenK. Experiences of ethical issues when caring for children with cancer. Cancer Nurs2015; 38: 125–132.
HindsPSSchumLBakerJN. Key factors affecting dying children and their families. J Palliat Med2005; 8(Suppl. 1): S70–S78.
9.
PapadatouDMartinsonIMChungPM. Caring for dying children: a comparative study of nurses’ experiences in Greece and Hong Kong. Cancer Nurs2001; 24: 402–412.
10.
MorganD. Caring for dying children: assessing the needs of the pediatric palliative care nurse. Pediatr Nurs2009; 35: 86–90.
11.
McCloskeySTaggartL. How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses. Int J Palliat Nurs2010; 16: 233–240.
12.
WoolleyHSteinAForrestGC. Staff stress and job satisfaction at a children’s hospice. Arch Dis Child1989; 64: 114–118.
13.
VachonMLSLyallWALFreemanSJJ. The measurement and management of stress in health professionals working with advanced cancer patients. Death Educ1978; 1: 365–375.
14.
BagatellRMeyerRHerronS. When children die: a seminar series for pediatric residents. Pediatrics2002; 110: 348–353.
15.
SerwintJRSimpsonDE. The use of standardized patients in pediatric residency training in palliative care: anatomy of a standardized patient case scenario. J Palliat Med2002; 5: 146–153.
16.
ShribmanS. Making it better: for children and young people. Report, Department of Health, London, February2007.
17.
PolitDFBeckCT. Nursing research: generating and assessing evidence for nursing practice. Philadelphia, PA: Wolters Kluwer Health, 2012, p. XIV, 802 pp.
18.
SandelowskiMVoilsCIBarrosoJ. Defining and designing mixed research synthesis studies. Res Sch2006; 13: 29–44.
19.
BrysonA. Integrating quantitative and qualitative research: how is it done?Qual Res2006; 1: 97–113.
20.
MoherDJadadANicholG. Assessing the quality of randomized controlled trials an annotated bibliography of scales and checklists. Control Clin Trials1995; 16: 62–73.
21.
PlanteJClaudeMD. Health care professionals’ grief after the death of a child. Paediatr Child Health2011; 16: 213–216.
22.
PluyePGagnonMPGriffithsF. A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews. Int J Nurs Stud2009; 46: 529–546.
23.
PaceRPluyePBartlettG. Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review. Int J Nurs Stud2012; 49: 47–53.
24.
BeckstrandRLRawleNICallisterL. Pediatric nurses’ perceptions of obstacles and supportive behaviours in end-of-life care. Am J Crit Care2010; 19: 543–552.
25.
BergstraesserEInglinSAbbruzzeseR. The needs of professionals in the palliative care of children and adolescents. Eur J Pediatr2013; 172: 111–118.
26.
BloomerMCopnellBEndacottR. Death anxiety in paediatric and neonatal intensive care nurses. In: 7th World Congress on pediatric intensive and critical care conference, Istanbul, Turkey, 4–7 May 2014, p. 8.
27.
ClarkeJQuinS. Professional carers’ experiences of providing a pediatric palliative care service in Ireland. Qual Health Res2007; 17: 1219–1231.
28.
ControNALarsonJScofieldS. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics2004; 114: 1248–1252.
29.
CookKAMottSLawrenceP. Coping while caring for the dying child: nurses’ experiences in an acute care setting. J Pediatr Nurs2012; 27: 11–21.
30.
FanosJH. ‘Coming Through the Fog, Coming Over the Moors’: the impact on pediatric oncologists of caring for seriously ill children. J Cancer Educ2007; 22: 119–123.
31.
FeudtnerCSantucciGFeinsteinJA. Hopeful thinking and level of comfort regarding providing pediatric palliative care: a survey of hospital nurses. Pediatrics2007; 119: 186–192.
32.
FuringstenLSjogrenRForsnerM. Ethical challenges when caring for dying children. Nurs Ethics. Epub ahead of print 10June2014. DOI: 10.1177/0969733014533234.
33.
KainVJ. An exploration of the grief experiences of neonatal nurses: a focus group study. J Neonat Nurs2013; 19: 80–88.
34.
KaplanLJ. Toward a model of caregiver grief: nurses’ experiences of treating dying children. Omega2000; 41: 187–206.
35.
KaunonenMTarkkaMTHautamakiK. The staff’s experience of the death of a child and of supporting the family. Int Nurs Rev2000; 47: 46–52.
36.
KlassenAGulatiSDixD. Health care providers’ perspectives about working with parents of children with cancer: a qualitative study. J Pediatr Oncol Nurs2012; 29: 92–97.
37.
Korzeniewska-EksterowiczAPrzysloLGrzelewskiT. Job satisfaction among health professionals of Home Hospice for Children of Lodz Region. Adv Pall Med2010; 3: 67–72.
38.
MacConnellGAstonMRandelP. Nurses’ experiences providing bereavement follow-up: an exploratory study using feminist poststructuralism. J Clin Nurs2012; 22: 1094–1102.
MaytumJCBielski-HeimanMGarwickAW. Compassion fatigue and burnout in nurses who work with children with chronic conditions and their families. J Pediatr Health Care2004; 18: 171–179.
41.
MeadorsPLamsonA. Compassion fatigue and secondary traumatization: provider self care on intensive care units for children. J Pediatr Health Care2008; 22: 24–34.
42.
NeilsonSJKaiJMacArtherC. Caring for children dying from cancer at home: a qualitative study of the experience of primary care practitioners. Fam Pract2011; 28: 545–553.
43.
PapadatouDBellaliT. Greek nurse and physician grief as a result of caring for children dying of cancer. Pediatr Nurs2002; 28: 345–353.
44.
PearsonHN. ‘You’ve only got one chance to get it right’: children’s cancer nurses’ experiences of providing palliative care in the acute hospital setting. Issues Compr Pediatr Nurs2013; 36: 188–211.
45.
PriceJJordanJPriorL. A consensus for change: parent and professional perspectives on care for children at the end-of-life. Issues Compr Pediatr Nurs2013; 36: 70–87.
46.
QuinnCBaileyME. Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists. Int J Palliat Nurs2011; 17: 561–567.
47.
ReidFC. Lived experiences of adult community nurses delivering palliative care to children and young people in rural areas. Int J Palliat Nurs2013; 19: 541–547.
McConnellTO’HalloranPDonnellyM. Factors affecting the successful implementation and sustainability of the Liverpool Care Pathway for dying patients: a realist evaluation. BMJ Support Palliat Care2015; 5: 70–77.
RashotteJFothergill-BourbonnaisFChamberlainM. Pediatric intensive care nurses and their grief experiences: a phenomenological study. Heart Lung1997; 26: 372–386.
