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Joanne Wolfe - One of the best experts on this subject based on the ideXlab platform.

  • Pediatric Palliative Care in oncology
    Journal of Clinical Oncology, 2020
    Co-Authors: Joanne Wolfe, Lori Wiener, Jennifer M Snaman, Sarah Mccarthy
    Abstract:

    Pediatric Palliative Care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration o...

  • development of a Pediatric Palliative Care curriculum and dissemination model education in Palliative and end of life Care epec Pediatrics
    Journal of Pain and Symptom Management, 2019
    Co-Authors: Joanne Wolfe, Stefan J. Friedrichsdorf, Andrea Postier, Stacy Remke, Joshua Hauser, Laurie Foster, Alison Kolste
    Abstract:

    Abstract Context Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist Pediatric Palliative Care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. Objectives Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. Methods Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010–2017, this 24-module curriculum was designed to teach primary Palliative Care. The target audience included interprofessional Pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. Results The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future “Trainers,” thus becoming “Master Facilitators.” Between 2012–May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient Care for children with serious illness at their home institutions. Conclusion EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.

  • experiences of children with trisomy 18 referred to Pediatric Palliative Care services on two continents
    American Journal of Medical Genetics Part A, 2019
    Co-Authors: Jonathan E Mullin, Joanne Wolfe, Myra Bluebondlangner, Finella Craig
    Abstract:

    Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive Pediatric Palliative Care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving Pediatric Palliative Care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015. Fifty-eight children with trisomy 18 were referred to Pediatric Palliative Care, 38 in the United Kingdom, 20 in the United States. Median age at referral was 19 days (2-89) in the United Kingdom, and 25 days (1-463) in the United States. Median length of time being followed by Pediatric Palliative Care was 32 days (1-1,637) in the United Kingdom and 67 days (3-2,442) in the United States. The only significant difference in the two cohorts (p = .001) was in likelihood of receiving cardiac surgical intervention-37% in the United States, 0% the United Kingdom. Children with trisomy 18 receive Pediatric Palliative Care services, with variable age at referral and for a variable length of time. Further research is needed to understand the experience of children with trisomy 18 and their families receiving Pediatric Palliative Care services.

  • national impact of the epec Pediatrics enhanced train the trainer model for delivering education on Pediatric Palliative Care
    Journal of Palliative Medicine, 2018
    Co-Authors: Kimberley Widger, Joanne Wolfe, Stefan J. Friedrichsdorf, Jason D Pole, Sarah Brennenstuhl, Stephen Liben, Mark T Greenberg, Eric Bouffet, Harold Siden
    Abstract:

    Abstract Background: Lack of Pediatric Palliative Care (PPC) training impedes successful integration of PPC principles into Pediatric oncology. Objectives: We examined the impact of an enhanced imp...

  • national impact of the epec Pediatrics enhanced train the trainer model for delivering education on Pediatric Palliative Care
    Journal of Palliative Medicine, 2018
    Co-Authors: Kimberley Widger, Joanne Wolfe, Stefan J. Friedrichsdorf, Jason D Pole, Sarah Brennenstuhl, Stephen Liben, Mark T Greenberg, Eric Bouffet, Harold Siden
    Abstract:

    Abstract Background: Lack of Pediatric Palliative Care (PPC) training impedes successful integration of PPC principles into Pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of Care quality. Setting/Subjects/Measurements: Regional Teams of 3–6 health professionals based at 15 Pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of ch...

Chris Feudtner - One of the best experts on this subject based on the ideXlab platform.

  • Pediatric Palliative Care in the multicultural context findings from a workshop conference
    Journal of Pain and Symptom Management, 2019
    Co-Authors: Kira Bona, Tumaini R Coker, Chris Feudtner, Kelli Houston, Anisa Ibrahim, Abby R. Rosenberg, Robert Macauley
    Abstract:

    Abstract Context In our increasingly multicultural society, providing sensitive and respectful Pediatric Palliative Care is vital. Objectives We held a one-day workshop conference with stakeholders and Pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard Care delivery. Methods Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real time. We used content analyses to qualitatively evaluate the texts and generate recommendations. Results Participants included 142 individuals representing over six unique disciplines, 25 of the U.S., and three nations. Although the conference focused on Pediatric Palliative Care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical Care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical Care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient and family experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes. Conclusion Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.

  • Pediatric Palliative Care in the multicultural context findings from a workshop conference
    Journal of Pain and Symptom Management, 2019
    Co-Authors: Kira Bona, Tumaini R Coker, Chris Feudtner, Kelli Houston, Anisa Ibrahim, Abby R. Rosenberg, Robert Macauley
    Abstract:

    Abstract Context In our increasingly multicultural society, providing sensitive and respectful Pediatric Palliative Care is vital. Objectives We held a one-day workshop conference with stakeholders and Pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard Care delivery. Methods Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real time. We used content analyses to qualitatively evaluate the texts and generate recommendations. Results Participants included 142 individuals representing over six unique disciplines, 25 of the U.S., and three nations. Although the conference focused on Pediatric Palliative Care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical Care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical Care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient and family experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes. Conclusion Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.

  • Pediatric oncology providers perceptions of a Palliative Care service the influence of emotional esteem and emotional labor
    Journal of Pain and Symptom Management, 2018
    Co-Authors: Julia E Szymczak, Chris Feudtner, Theodore E Schall, Douglas L Hill, Jennifer K Walter, Shefali Parikh, Concetta Didomenico
    Abstract:

    Abstract Context Pediatric Palliative Care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that Pediatric oncology providers hold about the Pediatric Palliative Care service (PPCS) may shape referral patterns. Objectives To explore how Pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation. Methods We conducted semistructured qualitative interviews with Pediatric oncology providers at a large children's hospital. Interviews were audio-recorded, transcribed, and analyzed by two coders using a modified grounded theory approach. Results We interviewed 16 providers (10 physicians, one nurse practitioner, two social workers, two psychologists, and one child life specialist). Three core perceptions emerged: 1) the PPCS offers a diverse range of valuable contributions to the Care of children with advancing cancer; 2) providers held favorable opinions about the PPCS owing to positive interactions with individual Palliative Care specialists deemed extraordinarily emotionally skilled; and 3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation. Conclusion The Pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of Palliative Care in this population may benefit from a focus on the emotional experiences of providers.

  • Pediatric Palliative Care and inpatient hospital costs a longitudinal cohort study
    Pediatrics, 2015
    Co-Authors: Andrew Smith, Chris Feudtner, Seth Andrews, Susan L Bratton, Joan Sheetz, Wenjun Zhong, Christopher G Maloney
    Abstract:

    BACKGROUND: Pediatric Palliative Care (PPC) improves the quality of life for children with life-limiting conditions, but the cost of Care associated with PPC has not been quantified. This study examined the association between inpatient cost and receipt of PPC among high-cost inpatients. METHODS: The 10% most costly inpatients treated at a children's hospital in 2010 were studied, and factors associated with receipt of PPC were determined. Among patients dying during 2010, we compared 2010 inpatient costs between PPC recipients and nonrecipients. Inpatient costs during the 2-year follow up period between PPC recipients and nonrecipients were also compared. Patients were analyzed in 2 groups: those who died and those who survived the 2-year follow-up. RESULTS: Of 902 patients, 86 (10%) received PPC. Technology dependence, older age, multiple chronic conditions, PICU admission, and death in 2010 were independently associated with receipt of PPC. PPC recipients had increased inpatient costs compared with nonrecipients during 2010. Among patients who died during the 2-year follow-up, PPC recipients had significantly lower inpatient costs. Among survivors, PPC recipients had greater inpatient costs. When controlling for patient complexity, differences in inpatient costs were not significant. CONCLUSIONS: The relationship of PPC to inpatient costs is complex. PPC seems to lower costs among patients approaching death. Patients selectively referred to PPC who survive most often do so with chronic serious illnesses that predispose them to remain lifelong high-resource utilizers.

  • Pediatric Palliative Care and Pediatric medical ethics opportunities and challenges
    Pediatrics, 2014
    Co-Authors: Chris Feudtner, Pamela G Nathanson
    Abstract:

    The fields of Pediatric Palliative Care (PPC) and Pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a Palliative Care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.

Stefan J. Friedrichsdorf - One of the best experts on this subject based on the ideXlab platform.

  • development of a Pediatric Palliative Care curriculum and dissemination model education in Palliative and end of life Care epec Pediatrics
    Journal of Pain and Symptom Management, 2019
    Co-Authors: Joanne Wolfe, Stefan J. Friedrichsdorf, Andrea Postier, Stacy Remke, Joshua Hauser, Laurie Foster, Alison Kolste
    Abstract:

    Abstract Context Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist Pediatric Palliative Care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. Objectives Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. Methods Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010–2017, this 24-module curriculum was designed to teach primary Palliative Care. The target audience included interprofessional Pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. Results The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future “Trainers,” thus becoming “Master Facilitators.” Between 2012–May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient Care for children with serious illness at their home institutions. Conclusion EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.

  • Pediatric Palliative Care
    'MDPI AG', 2019
    Co-Authors: Stefan J. Friedrichsdorf
    Abstract:

    At least 20 million children worldwide would benefit from Pediatric Palliative Care (PPC) annually, and eight million children would need specialized PPC services. In the USA alone, more than 42,000 children, 0–19 years, die annually; fifty-five percent of them are infants younger than one year old. Interdisciplinary PPC is about matching treatment to patient goals and is considered specialized medical Care for children with a serious illness. It is focused on relieving pain, distressing symptoms, and stress from a serious illness and is appropriate at any age and at any stage, together with curative treatment. The primary PPC goal is to improve the quality of life both for the child and for his/her family. Sadly, advances in the control of symptoms in children dying of life-limiting diseases have often not kept pace with treatment directed at curing the underlying disease. Data reveal that the majority of distressing symptoms in children with an advanced serious illness (such as pain, dyspnea and nausea/vomiting) are not treated, and, when treated, therapy is commonly ineffective. Emerging evidence shows that Palliative Care involvement results in improved quality of life, as well as prolongation of life. High-quality Pediatric Palliative Care for children with serious illnesses is now an expected standard of medical Care. However, there still remain significant barriers to achieving optimal Care, related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing. Fortunately, considerable advances have been made in recent years providing PPC around the globe both in resource-poor and resource-rich countries through Care provided at children’s hospitals, outpatient Palliative Care clinics, Palliative home Care, and free-standing children’s hospice houses. This book, authored by leading authorities in the field, is dedicated to describing existing gaps, as well as the achievements made in clinical Care, education, training, and research

  • national impact of the epec Pediatrics enhanced train the trainer model for delivering education on Pediatric Palliative Care
    Journal of Palliative Medicine, 2018
    Co-Authors: Kimberley Widger, Joanne Wolfe, Stefan J. Friedrichsdorf, Jason D Pole, Sarah Brennenstuhl, Stephen Liben, Mark T Greenberg, Eric Bouffet, Harold Siden
    Abstract:

    Abstract Background: Lack of Pediatric Palliative Care (PPC) training impedes successful integration of PPC principles into Pediatric oncology. Objectives: We examined the impact of an enhanced imp...

  • national impact of the epec Pediatrics enhanced train the trainer model for delivering education on Pediatric Palliative Care
    Journal of Palliative Medicine, 2018
    Co-Authors: Kimberley Widger, Joanne Wolfe, Stefan J. Friedrichsdorf, Jason D Pole, Sarah Brennenstuhl, Stephen Liben, Mark T Greenberg, Eric Bouffet, Harold Siden
    Abstract:

    Abstract Background: Lack of Pediatric Palliative Care (PPC) training impedes successful integration of PPC principles into Pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of Care quality. Setting/Subjects/Measurements: Regional Teams of 3–6 health professionals based at 15 Pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of ch...

  • protocol evaluating the impact of a nation wide train the trainer educational initiative to enhance the quality of Palliative Care for children with cancer
    BMC Palliative Care, 2016
    Co-Authors: Joanne Wolfe, Stefan J. Friedrichsdorf, Kimberley Widger, Jason D Pole, Stephen Liben, Mark T Greenberg, Eric Bouffet, Amna Husain, Harold Siden
    Abstract:

    Background There are identified gaps in the Care provided to children with cancer based on the self-identified lack of education for health Care professionals in Pediatric Palliative Care and in the perceptions of bereaved parents who describe suboptimal Care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.

Abby R. Rosenberg - One of the best experts on this subject based on the ideXlab platform.

  • exploring the impact of the coronavirus pandemic on Pediatric Palliative Care clinician personal and professional well being a qualitative analysis of u s survey data
    Journal of Pain and Symptom Management, 2021
    Co-Authors: Abby R. Rosenberg, Meaghann S Weaver, Abigail Fry, Lori Wiener
    Abstract:

    Abstract Context The COVID-19 pandemic has had a dramatic impact on Palliative Care delivery and patient experiences. Less is known about the experiences and responses of Palliative Care clinicians. Objective We aimed to describe the pandemic's impact on Pediatric Palliative Care clinicians' personal and professional well-being. Methods The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus (PANDEMIC) cross-sectional online survey was posted on 7 professional listservs between May and June 2020. We conducted a conventional content analysis of written responses to three open-ended questions regarding the lasting impact of COVID-19. Results Of 207 multidisciplinary respondents from 80 US cities, 148 (71%) provided written responses to open-ended questions, and 62 responses (42%) were related to personal, professional, or existential well-being. These responses were sorted into 4 major categories: personal burdens, professional burdens, personal benefits, and professional benefits. Respondents described burdens more commonly than they did benefits (67% vs. 33% of comments, respectively). Personal burdens related to increased fear and uncertainty, fear of bringing the virus home, and a sense of collective grief. Professional burdens included a sense of exhaustion, a challenge with work-life balance, personal experiences with colleagues infected with the virus, and considerations of leaving health Care altogether. Personal benefits included lessons learned, an evolving sense of what matters, and improved work-life balance. Professional benefits included opportunities for professional development and a sense of professional purpose. Conclusion Pediatric Palliative Care clinicians perceive a breadth of impacts from the COVID-19 pandemic. Ongoing clinician assessment is important as the pandemic continues.

  • Pediatric Palliative Care in the multicultural context findings from a workshop conference
    Journal of Pain and Symptom Management, 2019
    Co-Authors: Kira Bona, Tumaini R Coker, Chris Feudtner, Kelli Houston, Anisa Ibrahim, Abby R. Rosenberg, Robert Macauley
    Abstract:

    Abstract Context In our increasingly multicultural society, providing sensitive and respectful Pediatric Palliative Care is vital. Objectives We held a one-day workshop conference with stakeholders and Pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard Care delivery. Methods Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real time. We used content analyses to qualitatively evaluate the texts and generate recommendations. Results Participants included 142 individuals representing over six unique disciplines, 25 of the U.S., and three nations. Although the conference focused on Pediatric Palliative Care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical Care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical Care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient and family experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes. Conclusion Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.

  • Pediatric Palliative Care in the multicultural context findings from a workshop conference
    Journal of Pain and Symptom Management, 2019
    Co-Authors: Kira Bona, Tumaini R Coker, Chris Feudtner, Kelli Houston, Anisa Ibrahim, Abby R. Rosenberg, Robert Macauley
    Abstract:

    Abstract Context In our increasingly multicultural society, providing sensitive and respectful Pediatric Palliative Care is vital. Objectives We held a one-day workshop conference with stakeholders and Pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard Care delivery. Methods Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real time. We used content analyses to qualitatively evaluate the texts and generate recommendations. Results Participants included 142 individuals representing over six unique disciplines, 25 of the U.S., and three nations. Although the conference focused on Pediatric Palliative Care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical Care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical Care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient and family experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes. Conclusion Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.

Harold Siden - One of the best experts on this subject based on the ideXlab platform.

  • national impact of the epec Pediatrics enhanced train the trainer model for delivering education on Pediatric Palliative Care
    Journal of Palliative Medicine, 2018
    Co-Authors: Kimberley Widger, Joanne Wolfe, Stefan J. Friedrichsdorf, Jason D Pole, Sarah Brennenstuhl, Stephen Liben, Mark T Greenberg, Eric Bouffet, Harold Siden
    Abstract:

    Abstract Background: Lack of Pediatric Palliative Care (PPC) training impedes successful integration of PPC principles into Pediatric oncology. Objectives: We examined the impact of an enhanced imp...

  • national impact of the epec Pediatrics enhanced train the trainer model for delivering education on Pediatric Palliative Care
    Journal of Palliative Medicine, 2018
    Co-Authors: Kimberley Widger, Joanne Wolfe, Stefan J. Friedrichsdorf, Jason D Pole, Sarah Brennenstuhl, Stephen Liben, Mark T Greenberg, Eric Bouffet, Harold Siden
    Abstract:

    Abstract Background: Lack of Pediatric Palliative Care (PPC) training impedes successful integration of PPC principles into Pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of Care quality. Setting/Subjects/Measurements: Regional Teams of 3–6 health professionals based at 15 Pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of ch...

  • protocol evaluating the impact of a nation wide train the trainer educational initiative to enhance the quality of Palliative Care for children with cancer
    BMC Palliative Care, 2016
    Co-Authors: Joanne Wolfe, Stefan J. Friedrichsdorf, Kimberley Widger, Jason D Pole, Stephen Liben, Mark T Greenberg, Eric Bouffet, Amna Husain, Harold Siden
    Abstract:

    Background There are identified gaps in the Care provided to children with cancer based on the self-identified lack of education for health Care professionals in Pediatric Palliative Care and in the perceptions of bereaved parents who describe suboptimal Care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.

  • effect of Pediatric Palliative Care programs on health Care resource utilization and costs among children with life threatening conditions a systematic review of comparative studies
    CMAJ Open, 2015
    Co-Authors: Tania Conte, Craig Mitton, Logan Trenaman, Negar Chavoshi, Harold Siden
    Abstract:

    Results: Of the 5193 records identified, we reviewed 109 in full and included 11 in our study. The overall quality of the studies was moderate to low. We observed mixed results for all outcomes. Compared with patients receiving usual Care, fewer patients in the Palliative Care group had hospital admissions and fewer of those with cancer had planned hospital admissions. In contrast, no effects were observed regarding the overall number of hospital, emergency or outpatient admissions. Conflicting results were observed with regards to critical Care utilization. Studies showed a trend toward shorter lengths of stay in hospital in the Palliative Care group. However, a single study that also considered inpatient time in hospice facilities found an increase in total length of stay, which showed a shift in the setting of health Care utilization. We observed no conclusive trend in the effects on cost. Interpretation: Evidence suggests that Pediatric Palliative Care programs may result in a shift of utilization to other health Care settings beyond hospital Care. These settings should be considered when measuring resource utilization and costs.

  • Pediatric Palliative Care patients a prospective multicenter cohort study
    Pediatrics, 2011
    Co-Authors: Chris Feudtner, Stefan J. Friedrichsdorf, Harold Siden, Sarah Friebert, Ross M Hays, Tammy I Kang, Kari R Hexem, Kaci Osenga, Veronica Dussel, Joanne Wolfe
    Abstract:

    RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received Care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented Palliative Care teams, most PPC patients are alive for more than a year after initiating PPC. Pediatrics 2011;127:000