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>
Inequalities in Access to Bereavement Support Before and During COVID-19: Findings from Voluntary and Community Sector Bereavement Services in the UK
bereavement; child; hospice; human; female; male; attention; bereavement; palliative; organization; gender; welfare; therapy; support; study; pandemic; disease; 2019; clinical; population; abstract; conference; controlled; major; social; and; ethnic; coronavirus; disadvantaged; group; media; minority; sexual
Background/aims: The COVID-19 pandemic has resulted in global mass bereavement; in the UK alone there have been 140,000 deaths to date, with a disproportionate impact on Black, Asian or minoritized ethnic (BME) communities. Voluntary and community sector (VCS) bereavement services including hospices play an important role in bereavement support. We aimed to determine services' perspectives on access to their support.
Selman L; Sutton E; Medeiros Mirra R; Goss S; Longo M; Seddon K; Penny A; Wakefield D; Nelson A; Byrne A; Harrop E
Palliative Medicine
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/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
Human Touch via Touchscreen: Rural nurses' experiential perspectives on telehealth use in pediatric hospice care
communication; coronavirus; hospice care; palliative care; pediatric palliative care; Telehealth; telemedicine
CONTEXT: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts. OBJECTIVES: The objective of this qualitative study was to learn from the experiences of rural hospice nurses caring for children at the end of life using telehealth modalities to inform palliative communication. METHODS: Voice-recorded qualitative interviews with rural hospice nurse telehealth users inquiring on nurse experiences with telehealth. Semantic content analysis was used. RESULTS: Fifteen hospice nurses representing nine rural hospice agencies were interviewed. Nurses participated in an average of eight telehealth visits in the three-months prior. Nurses were female with mean age 38 years and average 7 years hospice nursing experience. Five themes about telehealth emerged: accessible support, participant inclusion, timely communication, informed and trusted planning, and familiarity fostered. Each theme had both benefits and cautions associated as well as telehealth suggestions. Nurses recommended individualizing communication, pacing content, fostering human connection, and developing relationships even with technology use. CONCLUSIONS: The experiences of nurses who utilize telehealth in their care for children receiving end of life care in rural regions may enable palliative care teams to understand both the benefits and challenges of telehealth use. Nurse insights on telehealth may help palliative care teams better honor the communication needs of patients and families while striving to improve care access.
Weaver M S; Neumann M L; Navaneethan H; Robinson J E; Hinds P S
Journal of Pain and Symptom Management
2020
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/10.1016/j.jpainsymman.2020.06.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.003</a>
Applying Palliative Care Principles to Communicate With Children About COVID-19
children; communication; coronavirus; COVID-19; pediatric; pediatric palliative
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Weaver M S; Wiener L
Journal of Pain and Symptom Management
2020
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/10.1016/j.jpainsymman.2020.03.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.020</a>