Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2016 Mar;30(3):212-23.
doi: 10.1177/0269216315583446. Epub 2015 Apr 28.

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review

Meaghann S Weaver  1 , Katherine E Heinze  2 , Cynthia J Bell  3 , Lori Wiener  4 , Amy M Garee  5 , Katherine P Kelly  6 , Robert L Casey  7 , Anne Watson  8 , Pamela S Hinds; Pediatric Palliative Care Special Interest Group at Children’s National Health System
Affiliations
Review

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review

Meaghann S Weaver et al. Palliat Med. 2016 Mar.

Abstract

Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.

Aim: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors.

Design: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology.

Data sources: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report.

Results: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality.

Conclusion: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.

Keywords: Literature review; integrative; palliative care; pediatric oncology; psychosocial.

PubMed Disclaimer

Conflict of interest statement

Conflict of Interest: The authors declare that there is no conflict of interest.

Figures

Figure 1
Figure 1
Triangulated Steps of Data Analysis and Integration
Figure 2
Figure 2
Conceptual Framework for Psychosocial Pediatric Palliative Cancer Care
Figure 3
Figure 3
PRISMA: Preferred Reporting for Systematic Reviews and Meta-Analyses
See this image and copyright information in PMC

References

    1. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Institute of Medicine of The National Academies; 2014. - PubMed
    1. Cataudella DA, Zelcer S. Psychological experiences of children with brain tumors at end of life: parental perspectives. J Palliat Med. 2012;15:1191–7. - PubMed
    1. Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;156:14–9. - PubMed
    1. Jones BL, Contro N, Koch KD. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring. Pediatrics. 2014;133(Suppl 1):S8–15. - PubMed
    1. Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117:2289–94. - PubMed

Publication types