Perceptions of specialty palliative care and its role in pediatric stem cell transplant: A multidisciplinary qualitative study
pediatric; psychosocial; palliative care; quality of life; qualitative research; stem cell transplantation; BMT
Background: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT. Little is known about how multidisciplinary pediatric SCT teams perceive palliative care and its role in SCT. Procedure: We conducted semistructured interviews of members of a multi-disciplinary SCT team to understand their perceptions of palliative care, how specialty palliative care is integrated into SCT, and to identify barriers to increased integration. Eligible participants included physicians, nurses, inpatient nurse practitioners, social workers, and child life specialists. Data were analyzed using thematic analysis. Result(s): Four major themes were identified. First, SCT team members held a favorable perception of the palliative care team. Second, participants desired increased palliative care integration in SCT. Third, participants believed that the palliative care team had insufficient resources to care for the large number of SCT patients, which led to the SCT team limiting palliative care consultation. And, finally, the lack of a standardized palliative care consultation process prevented greater integration of palliative care in SCT. Conclusion(s): SCT team members held a favorable perception of palliative care and saw a role for greater palliative care integration throughout the SCT course. We identified modifiable barriers to greater palliative care integration. SCT teams who desire greater palliative care integration may adapt and implement an existing model of palliative care integration in order to improve standardization and increase integration of specialty palliative care in SCT. Copyright © 2021 Wiley Periodicals LLC
Collins GS; Beaman H; Ho AM; Hermiston ML; Cohen HJ; Dzeng EW
Pediatric Blood and Cancer
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/10.1002/pbc.29424" target="_blank" rel="noreferrer noopener">10.1002/pbc.29424</a>
Palliative Care Is Critical to the Changing Face of Child Mortality and Morbidity in the United States
child mortality
NO ABSTRACT PARAGRAPH 1: In hospitals around the nation, children with medical complexity (CMC) receive life-prolonging interventions for debilitating diseases. These children are alive because of disease-focused interventions including multiple medications, innovative procedures, durable medical equipment, and continuous care. Their lives depend on an intricate dance of family caregivers—along with health care providers—who must manage long-term illnesses in their homes and communities in the context of a health care system that is only beginning to address the challenges of complex chronic disease care for children.
2014-05
Bogetz JF; Schroeder AR; Bergman DA; Cohen HJ; Sourkes B
Clinical Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1177/0009922814534767" target="_blank" rel="noreferrer">10.1177/0009922814534767</a>
Hospital staff and family perspectives regarding quality of pediatric palliative care.
Child; Humans; Attitude to Health; Data Collection; Attitude of Health Personnel; Professional-Family Relations; Communication; Longitudinal Studies; Quality of Health Care; Non-U.S. Gov't; Research Support; bereavement; Family/psychology; Palliative Care/standards; Pain/therapy; Personnel; Hospital/psychology; Pediatrics/education/standards
BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. RESULTS: Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. CONCLUSIONS: Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.
2004
Contro N; Larson J; Scofield S; Sourkes B; Cohen HJ
Pediatrics
2004
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2003-0857-l" target="_blank" rel="noreferrer">10.1542/peds.2003-0857-l</a>