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

Luca Ghirotto, Elena Busani, Michela Salvati, Valeria Di Marco, Valeria Caldarelli, Giovanna Artioli

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)1-12
Number of pages12
JournalPalliative and Supportive Care
DOIs
Publication statusAccepted/In press - May 29 2018

Keywords

  • children's voice
  • Meta-summary
  • neoplasm
  • pediatric palliative care
  • qualitative research

ASJC Scopus subject areas

  • Nursing(all)
  • Clinical Psychology
  • Psychiatry and Mental health

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