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

Meaghann S Weaver; Katherine E Heinze; Cynthia J Bell; Lori Wiener; Amy M Garee; Katherine P Kelly; Robert L Casey; Anne Watson; Pamela S Hinds; Pediatric Palliative Care Special Interest Group at Children’s National Health System

doi:10.1177/0269216315583446

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

Palliat Med. 2016 Mar;30(3):212-23. doi: 10.1177/0269216315583446. Epub 2015 Apr 28.

Authors

Meaghann S Weaver¹, Katherine E Heinze², Cynthia J Bell³, Lori Wiener⁴, Amy M Garee⁵, Katherine P Kelly⁶, Robert L Casey⁷, Anne Watson⁸, Pamela S Hinds; Pediatric Palliative Care Special Interest Group at Children’s National Health System

Affiliations

¹ Department of Oncology, Children's National Health System, Washington, DC, USA Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA Meaghann.Weaver@StJude.org.
² School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
³ College of Nursing, Wayne State University, Detroit, MI, USA Hospice of Michigan Institute, Detroit, MI, USA.
⁴ Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.
⁵ Department of Oncology, Nationwide Children's Hospital, Columbus, OH, USA.
⁶ Department of Nursing Research and Quality Outcomes, Children's National Health System, Washington, DC, USA.
⁷ Department of Psychology, University of Colorado, Denver, CO, USA.
⁸ Department of Critical Care Medicine, Children's National Health System, Washington DC, USA.

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.

Publication types

Research Support, N.I.H., Intramural
Research Support, Non-U.S. Gov't
Review

MeSH terms

Adolescent
Caregivers / psychology
Child
Counseling / standards
Female
Health Services Accessibility / standards
Health Services Needs and Demand
Humans
Male
Needs Assessment
Neoplasms / psychology
Neoplasms / therapy*
Palliative Care / organization & administration
Palliative Care / standards*
Pediatrics / standards*
Qualitative Research
Quality of Health Care / standards
Social Support

Grants and funding

Z99 CA999999/Intramural NIH HHS/United States