Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review.
BACKGROUND
Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.


OBJECTIVE
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.


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


METHODS
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.


CONCLUSIONS
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.
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.
Meaghann S
MS
Weaver
School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
Katherine E
KE
Heinze
College of Nursing, Wayne State University, Detroit, MI, USA Hospice of Michigan Institute, Detroit, MI, USA.
Cynthia J
CJ
Bell
Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.
Lori
L
Wiener
Department of Oncology, Nationwide Children's Hospital, Columbus, OH, USA.
Amy M
AM
Garee
Department of Nursing Research and Quality Outcomes, Children's National Health System, Washington, DC, USA.
Katherine P
KP
Kelly
Department of Psychology, University of Colorado, Denver, CO, USA.
Robert L
RL
Casey
Department of Critical Care Medicine, Children's National Health System, Washington DC, USA.
Anne
A
Watson
Pamela S
PS
Hinds
D000293:Adolescent; D017028:Caregivers / Q000523:psychology; D002648:Child; D003376:Counseling / Q000592:standards; D005260:Female; D006297:Health Services Accessibility / Q000592:standards; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D020380:Needs Assessment; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010166:Palliative Care / Q000458:organization & administration / Q000592:standards*; D010372:Pediatrics / Q000592:standards*; D036301:Qualitative Research; D011787:Quality of Health Care / Q000592:standards; D012944:Social Support
Literature review; integrative; palliative care; pediatric oncology; psychosocial