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

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.

Communication preferences of pediatric cancer patients: talking about prognosis and their future life

“…These findings support prior research and highlight the important role that parents continue to play during an adolescent's cancer treatment and at the end-of-life [24,12]. While older children and adolescents are seeking autonomy from their parents, they also rely on their parents to filter information and free them from the burdens of hearing overly difficult information.…”

Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis

“…Parents described feeling pulled between two fronts when one child is hospitalized (Whiting, 2012); yet, parents recognize the context-specific and general needs of their healthy children despite the devastating situation with their ill child (Kamihara, Nyborn, Olcese, Nickerson, & Mack, 2015). Our findings contribute to calls from professional bodies and investigator groups that supporting parents will ultimately benefit ill children and their healthy siblings (Feudtner et al, 2013; Weaver et al, 2016). In our data, the second sub-theme reflects parents’ expectations to keep the family together despite difficulties of the life-threatening illness.…”

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

“…However, Weaver et al 3 state that ‘pediatric and adolescent age oncology patients and their families have identified their psychosocial care needs as both complex and unique from adult psychosocial care needs’.…”