Palliative Care Training for Pediatric Hematology/Oncology Fellows: a Canadian Perspective
Palliative care; Pediatric; Education; Training; Oncology
Children with cancer experience suffering, particularly at the end of life. Pediatric hematology/oncology (PHO) fellows need dedicated palliative care (PC) training in order to adequately manage this suffering. Our objectives were to understand (1) the PC training needs of Canadian PHO fellows and (2) experiences in providing PC, from the perspectives of fellows and their training program directors (PDs) and to describe (1) our experience in enhancing our institutional PC curriculum and (2) the preliminary evaluation of this curriculum. Electronic surveys were sent to all Canadian PHO fellows and PDs. Fellows participating in our curriculum were also sent post-course surveys. All 9/9 of the PDs and 63% (29/46) of the fellows completed our pre-course surveys. The majority of survey participants agreed that PHO fellows require dedicated PC training. All programs provided some PC education, but 45% of programs offered 3 or fewer hours of training per year. Only 55% (5/9) of the PDs believed that their trainees had adequate PC skills on completion of training. Fellows perceived a range of PC skills to be important but expressed low levels of comfort across these skills. Many fellows had experienced distress as a result of managing PC clinical situations, and many cited a lack of training as contributing to their distress. Despite increasing awareness of the importance of PC education for PHO fellows, this subject does not receive adequate attention in training curricula. The introduction of a Canadian national curriculum may improve the provision of PC training in education programs.
Hasan F; Weingarten K; Cada M; Wilejto M
Journal of Cancer Education
2021
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/10.1007/s13187-021-02094-z" target="_blank" rel="noreferrer noopener">10.1007/s13187-021-02094-z</a>
Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers
pediatric palliative care; continuing professional development; distance education; Project ECHO
Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice. Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.
Lalloo C; Osei-Twum J; Rapoport A; Vadeboncoeur C; Weingarten K; Veldhuijzen van Zanten S; Widger K; Stinson J
Journal of Palliative Medicine
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/10.1089/jpm.2020.0496" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0496</a>
End-of-life care of children with diffuse intrinsic pontine glioma
Palliative care; terminal care; Child; End-of-life care; Only Child; Palliative Care; Pediatric oncology; Terminal Care; child; Diffuse intrinsic pontine glioma (DIPG); Glioma
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a "Do not resuscitate" order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.
Hasan F; Weingarten K; Rapoport A; Bouffet E; Bartels U
Journal of Neuro-Oncology
2018
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/10.1007/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">10.1007/s11060-018-2781-0</a>
Improving Quality of life in Hospitalized Children
Children; quality of life; Hospital; Distress
There are many ways to add to children's quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers. Yet some characteristics of the inpatient setting, including the availability of human resources and unique interventions, offer creative ways to ease distress and improve quality of life for children and their families.
2014-08
Rapoport A; Weingarten K
Pediatric Clinics Of North America
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/10.1016/j.pcl.2014.04.010" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.010</a>