Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer
palliative care; Palliative Care; Recurrence; Referral and Consultation; end-of-life; pediatric oncology
Background: Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for their child's end-of-life (EOL). Oncology clinicians cite barriers to pediatric palliative care (PPC) consultation, including concerns that PPC teams will upset families with EOL discussions. This study evaluated topics addressed by PPC teams over the course of their relationship with children who died from cancer. Methods: Retrospective chart review of children who were diagnosed with relapsed/refractory cancer, received PPC consultation at an academic children's hospital, and died between January 2008 and January 2017. Information was extracted regarding the child's treatment, EOL care, and the content of PPC consultation over the course of the team's relationship with the child/family. Results: Fifty-six children were included in the analysis. The most frequent reasons for the initial consult were pain (nā=ā31, 55%) and non-pain symptom management (nā=ā18, 32%). At the initial consult, the PPC team most often discussed symptom management and psychosocial support. Prognosis was not discussed in any initial consult. Over subsequent visits, the PPC team expanded their scope of discussion to include goals of care, advance care planning, and hospice. Discussion: Concerns from oncology clinicians that PPC teams will extend beyond the reasons for initial consult into prognostic/EOL discussions at the first visit may be unfounded. Greater familiarity with PPC team practices may facilitate more timely consultation of PPC and its complementary set of services.
Root MC; Koo J; Collins G; Penumarthy NL; Hermiston M; Bogetz JF
Journal of Pediatric Hematology/Oncology Nursing
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/27527530221140069" target="_blank" rel="noreferrer noopener">10.1177/27527530221140069</a>
Ethical Considerations in Oncology and Palliative Care Research During COVID-19
coronavirus; research design; research ethics; virtual research; controlled study; human neoplasm therapy; palliative nursing; palliative therapy; pandemic; randomized controlled; trial
Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify traditional in-person research to virtually delivered activities and still adhere to healthcare ethical principles of beneficence, justice, and respect for persons. Our objective is to describe ethical considerations faced by nurse investigators who modified research conducted in pediatric oncology during the COVID-19 pandemic. Methods Review of research case examples. Results Two research study case examples are presented, including remote-participant recruitment via Facebook advertising and a virtually delivered web-based legacy intervention in a pediatric oncology randomized clinical trial. Challenges to modifying in-person approaches to remote strategies are also discussed, with examples of advantages and disadvantages presented from a study testing a human-animal interaction intervention for children with cancer. Discussion Our case information may assist other investigators in planning virtually delivered behavioral strategies for populations that may prefer the convenience of remote participation in research studies because of multiple family responsibilities in the care of a family member, during the pandemic and after. As researchers understand more about subjects' preferences to receive protocol activities (i.e., virtual vs. in-person delivery), they may be able to reduce risks of being unable to collect data because eligible subjects declined or withdrew from a study due to multiple-home responsibilities during the care of a family member with a serious or life-limiting condition.
Akard TF; Gilmer MJ; Hendricks-Ferguson VL
Journal of Pediatric Hematology/Oncology Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/27527530221073298">10.1177/27527530221073298</a>
Reiki Therapy for Very Young Hospitalized Children Receiving Palliative Care
Children; Hospitalization; Palliative care; Reiki
Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on pain, stress, heart, and respiratory rates, oxygenation, and quality of life (QoL) in hospitalized young children receiving palliative care services.
Thrane SE; Williams E; Grossoehme DH; Friebert S
Journal of Pediatric Hematology/Oncology Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/27527530211059435" target="_blank" rel="noreferrer noopener">10.1177/27527530211059435</a>