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Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research

Published online by Cambridge University Press:  29 May 2018

Luca Ghirotto Open the ORCID record for Luca Ghirotto [Opens in a new window] ,
Elena Busani ,
Michela Salvati ,
Valeria Di Marco ,
Valeria Caldarelli  and
Giovanna Artioli
Luca Ghirotto*
Affiliation:
Scientific Directorate, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy
Elena Busani
Affiliation:
Azienda Socio Sanitaria Territoriale Grande Ospedale Metropolitano Niguarda, Milano, Lombardia, Italy
Michela Salvati
Affiliation:
Presidio Ospedaliero Provinciale Sant'Agostino, Modena, Emilia-Romagna, Italy
Valeria Di Marco
Affiliation:
Agenzia di Tutela della Salute di Bergamo Ovest, Treviglio, Lombardia, Italy
Valeria Caldarelli
Affiliation:
Pediatric, Azienda Unita Sanitaria Locale di Reggio Emilia, Reggio Emilia, Italy
Giovanna Artioli
Affiliation:
Palliative Care Unit, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy
*
Author for correspondence: Luca Ghirotto, Ph.D., Azienda USL - IRCCS di Reggio Emilia, Scientific Directorate, viale Umberto I, 50, Reggio Emilia, IT 42123. E-mail: luca.ghirotto@ausl.re.it
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Abstract

Objective

Qualitative research is pivotal in gaining understanding of individuals’ experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children.

Method

A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.

Result

We retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, “living beyond pain,” the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.

Significance of results

This meta-summary presents the “state of the art” of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.

Keywords

Meta-summaryqualitative researchpediatric palliative carechildren's voiceneoplasm
Type
Review Article
Information
Palliative & Supportive Care , Volume 17 , Issue 1 , February 2019 , pp. 107 - 118
Copyright
Copyright © Cambridge University Press 2018 

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References

Akard, TF et al. (2013) From qualitative work to intervention development in pediatric oncology palliative care research. Journal of Pediatric Oncology Nursing 30(3), 153–160.10.1177/1043454213487434Google Scholar
Amery, JM et al. (2009) The beginnings of children's palliative care in Africa: Evaluation of a children's palliative care service in Africa. Journal of Palliative Medicine 12(11), 1015–1021.10.1089/jpm.2009.0125Google Scholar
Badarau, DO et al. (2017) Decision making in pediatric oncology: Views of parents and physicians in two European countries. AJOB Empirical Bioethics 8(1), 21–31.10.1080/23294515.2016.1234519Google Scholar
Baker, JN et al. (2015). Research priorities in pediatric palliative care. The Journal of Pediatrics 167(2), 467–470.10.1016/j.jpeds.2015.05.002Google Scholar
Borghi, CA et al. (2014) Living with pain: the experience of children and adolescents in palliative care. Revista da Escola de Enfermagem 48, 67–73.10.1590/S0080-623420140000600010Google Scholar
Carter, B, Edwards, M, and Hun, A (2015) ‘Being a presence’: The ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children. Journal of Child Health Care 19, 304–319.10.1177/1367493513516391Google Scholar
Coad, J et al. (2015) Exploring the perceived met and unmet need of life-limited children, young people and families. Journal of Pediatric Nursing 30(1), 45–53.10.1016/j.pedn.2014.09.007Google Scholar
Committee on Palliative and End-of-Life Care for Children and Their Families, Board on Health Sciences Policy (2003) When children die: Improving palliative and end-of-life care for children and their families. Washington DC: The National Academies Press.Google Scholar
Critical Appraisal Skills Programme (CASP) (2013) Qualitative research checklist. Available from: http://media.wix.com/ugd/dded87_951541699e9edc71ce66c9bac4734c69.pdf (accessed 26 July 2017).Google Scholar
Davies, B et al. (2005) Children's perspectives of a pediatric hospice program. Journal of Palliative Care 21(4), 252–261.Google Scholar
Flavelle, SC (2011) Experience of an adolescent living with and dying of cancer. Archives of Pediatrics & Adolescent Medicine 165(1), 28–32.10.1001/archpediatrics.2010.249Google Scholar
Gaab, EM, Owens, RG, and MacLeod, RD (2013) The voices of young New Zealanders involved in pediatric palliative care. Journal of Palliative Care 29(3), 186–192.10.1177/082585971302900308Google Scholar
Hinds, PS et al. (2007) Patient-reported outcomes in end-of-life research in pediatric oncology. Journal of Pediatric Psychology 32(9), 1079–1088.10.1093/jpepsy/jsm004Google Scholar
Hinds, PS et al. (2005) End-of-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology 23(36), 9146–9154.Google Scholar
Hsiao, JL, Evan, EE, and Zeltzer, LK (2007) Parent and child perspectives on physician communication in pediatric palliative care. Palliative and Supportive Care 5(4), 355–365.10.1017/S1478951507000557Google Scholar
Huang, I-C et al. (2010) Measuring quality of life in pediatric palliative care: Challenges and potential solutions. Palliative Medicine 24(2), 175–182.Google Scholar
Kortesluoma, RL and Nikkonen, M (2006) ‘The most disgusting ever’: children's pain descriptions and views of the purpose of pain. Journal of Child Health Care 10(3), 213–227.10.1177/1367493506066482Google Scholar
Kortesluoma, RL and Nikkonen, M (2004) ‘I had this horrible pain’: The sources and causes of pain experiences in 4- to 11-year-old hospitalized children. Journal of Child Health Care 8(3), 210–231.10.1177/1367493504045822Google Scholar
Kortesluoma, RL, Nikkonen, M, and Serlo, W (2008) “You just have to make the pain go away”--children's experiences of pain management. Pain Management Nursing 9(4), 143–149.10.1016/j.pmn.2008.07.002Google Scholar
Moher, D et al. (2009) Preferred reporting items for systematic reviews and meta-analyses: The PRISMA Statement. PLOS Medicine 6(7), e1000097.10.1371/journal.pmed.1000097Google Scholar
Morgan, D (2009) Caring for dying children: Assessing the needs of the pediatric palliative care nurse. Journal of Pediatric Nursing 35(2), 86–90.Google Scholar
Noyes, J et al. (2013) Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of “My Choices.” BMC Palliative Care 12, 5.10.1186/1472-684X-12-5Google Scholar
O'Quinn, LP and Giambra, BK (2014) Evidence of improved quality of life with pediatric palliative care. Journal of Pediatric Nursing 40(6), 284–288.Google Scholar
Sackett, DL and Wennberg, JE (1997) Choosing the best research design for each question. British Medical Journal 315(7123), 1636.10.1136/bmj.315.7123.1636Google Scholar
Sandelowski, M and Barroso, J (2003). Creating metasummaries of qualitative findings. Nursing Research 52(4), 226–233.10.1097/00006199-200307000-00004Google Scholar
Sandelowski, M, Barroso, J, and Voils, CI (2007) Using qualitative metasummary to synthesize qualitative and quantitative descriptive findings. Research in Nursing & Health 30(1), 99–111.10.1002/nur.20176Google Scholar
Snaman, JM et al. (2018) Pediatric palliative oncology: The state of the science and art of caring for children with cancer. Current Opinion in Pediatrics 30(1), 40–48.Google Scholar
Spalding, J and Yardley, S (2016) ‘The nice thing about doctors is that you can sometimes get a day off school’: An action research study to bring lived experiences from children, parents and hospice staff into medical students' preparation for practice. BMJ Supportive & Palliative Care 6, 459–464.Google Scholar
Steele, R et al. (2008) Research priorities in pediatric palliative care: A Delphi study. Journal of Palliative Care 24(4), 229–239.Google Scholar
Stevenson, M, Achille, M, and Lugasi, T (2013) Pediatric palliative care in Canada and the United States: A qualitative metasummary of the needs of patients and families. Journal of Palliative Medicine 16(4), 566–577.10.1089/jpm.2011.0076Google Scholar
Swallow, V, Forrester, T, and Macfadyen, A (2012) Teenagers' and parents' views on a short-break service for children with life-limiting conditions: A qualitative study. Palliative Medicine 26(3), 257–267.10.1177/0269216311401947Google Scholar
Tamannai, M et al. (2015) An evaluation of a palliative care outreach programme for children with Burkitt lymphoma in rural Cameroon. International Journal of Palliative Nursing 21(7), 331–337.10.12968/ijpn.2015.21.7.331Google Scholar
Thorne, S et al. (2004) Qualitative metasynthesis: Reflections on methodological orientation and ideological agenda. Qualitative Health Research 14(10), 1342–1365.Google Scholar
Tong, A et al. (2012) Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology 12, 181.10.1186/1471-2288-12-181Google Scholar
Ulrich, L-R et al. (2018) Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) – work package II: Plliative care for pediatric patients. BMC Palliative Care 17(1), 14.10.1186/s12904-017-0268-yGoogle Scholar
Weaver, MS et al. (2016) Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliative Medicine 30(3), 212–223.10.1177/0269216315583446Google Scholar
Weaver, MS et al. (2015) Palliative care as a standard of care in pediatric oncology. Pediatric Blood & Cancer 62, S829–S833.10.1002/pbc.25695Google Scholar
World Health Organization (1998) Cancer pain relief and palliative care in children. Geneva: WHO.Google Scholar
World Health Organization (2002) WHO definition of palliative care. www.who.int/cancer/palliative/definition/en (accessed 29 September 2017).Google Scholar