Next Article in Journal
Secondary Malignant Neoplasms Following Haematopoietic Stem Cell Transplantation in Childhood
Previous Article in Journal
Cystic Fibrosis Treatment: A Paradigm for New Pediatric Medicines, Globalization of Drug Development and the Role of the European Medicines Agency
Article Menu

Export Article

Open AccessArticle
Children 2015, 2(1), 131-145; doi:10.3390/children2010131

Families’ Perspectives of Quality of Life in Pediatric Palliative Care Patients

University of California, 5200 Lake Road, Merced, CA 95343, USA
Academic Editor: Sari Acra
Received: 10 December 2014 / Revised: 20 February 2015 / Accepted: 23 February 2015 / Published: 23 March 2015
View Full-Text   |   Download PDF [219 KB, uploaded 23 March 2015]   |  

Abstract

Medical and academic institutions began prioritizing Pediatric Palliative Care (PPC) less than two decades ago. Although policies and institutions claim to improve the Quality of Life (QoL) of PPC patients and their families, family-defined QoL remains ambiguous. This research investigates the definitions of QoL for PPC patients according to their primary caregivers. We conducted qualitative, semi-structured focus groups of the primary caregivers of PPC patients. The transcripts were analysed for themes using inductive thematic analysis. Participants included primary caregivers of children currently receiving PPC from a healthcare institution in California. We identified several factors that primary caregivers considered components of QoL for their children. The ability to communicate and adapt or be accepted underpinned the concept of QoL for families. QoL for PPC patients was defined by primary caregivers as being able to communicate in a respectful, controlled, physically- and socially-comfortable environment. Attempts to improve QoL should focus not only on pain and symptom control, but also on enhancing opportunities for children to communicate and maintain a sense of dignity. View Full-Text
Keywords: pediatric palliative care; quality of life; children; families; chronic illness; coping; healthcare pediatric palliative care; quality of life; children; families; chronic illness; coping; healthcare
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. (CC BY 4.0).

Scifeed alert for new publications

Never miss any articles matching your research from any publisher
  • Get alerts for new papers matching your research
  • Find out the new papers from selected authors
  • Updated daily for 49'000+ journals and 6000+ publishers
  • Define your Scifeed now

SciFeed Share & Cite This Article

MDPI and ACS Style

Gaab, E.M. Families’ Perspectives of Quality of Life in Pediatric Palliative Care Patients. Children 2015, 2, 131-145.

Show more citation formats Show less citations formats

Related Articles

Article Metrics

Article Access Statistics

1

Comments

[Return to top]
Children EISSN 2227-9067 Published by MDPI AG, Basel, Switzerland RSS E-Mail Table of Contents Alert
Back to Top