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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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