7 results
Provider insights on shared decision-making with families affected by CHD
- Nelangi M. Pinto, Angira Patel, Rebecca K. Delaney, Mary T. Donofrio, Bradley S. Marino, Stephen Miller, Elissa M. Ozanne, Susan L. Zickmund, Michelle H. Karasawa, Mandy L. Pershing, Angela Fagerlin
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- Journal:
- Cardiology in the Young / Volume 32 / Issue 9 / September 2022
- Published online by Cambridge University Press:
- 03 November 2021, pp. 1475-1482
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Background and Objectives:
Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers’ perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making.
Methods:We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach.
Results:Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliative care providers (n = 5). Key barriers to communication with parents that providers identified included variability among providers themselves, factors that influenced parental comprehension or understanding, discrepant expectations, circumstantial barriers, and trust/relationship with providers. When discussing informational needs of parents, providers focused on comprehensive short- and long-term outcomes, quality of life, and breadth and depth that aligned with parental goals and needs. In discussing resources to support shared decision-making, providers emphasised the need for comprehensive, up-to-date information that was accessible to parents of varying situations and backgrounds.
Conclusions:Provider perspectives on decision-making with families with CHD highlighted key communication issues, informational priorities, and components of decision support that can enhance shared decision-making.
Parent mental health and family functioning following diagnosis of CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative
- Erica Sood, Amy Jo Lisanti, Sarah E. Woolf-King, Jo Wray, Nadine Kasparian, Emily Jackson, Mary R. Gregory, Keila N. Lopez, Bradley S. Marino, Trent Neely, Amy Randall, Sinai C. Zyblewski, Cheryl L. Brosig
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- Journal:
- Cardiology in the Young / Volume 31 / Issue 6 / June 2021
- Published online by Cambridge University Press:
- 04 June 2021, pp. 900-914
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Diagnosis of CHD substantially affects parent mental health and family functioning, thereby influencing child neurodevelopmental and psychosocial outcomes. Recognition of the need to proactively support parent mental health and family functioning following cardiac diagnosis to promote psychosocial adaptation has increased substantially over recent years. However, significant gaps in knowledge remain and families continue to report critical unmet psychosocial needs. The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute to identify significant knowledge gaps related to parent mental health and family functioning, as well as critical questions that must be answered to further knowledge, policy, care, and outcomes. Conceptually driven investigations are needed to identify parent mental health and family functioning factors with the strongest influence on child outcomes, to obtain a deeper understanding of the biomarkers associated with these factors, and to better understand how parent mental health and family functioning influence child outcomes over time. Investigations are also needed to develop, test, and implement sustainable models of mental health screening and assessment, as well as effective interventions to optimise parent mental health and family functioning to promote psychosocial adaptation. The critical questions and investigations outlined in this paper provide a roadmap for future research to close gaps in knowledge, improve care, and promote positive outcomes for families of children with CHD.
2348: Collaborative translational workforce development: Standardizing clinical research nursing education in good clinical practice
- Patricia Eckardt, Christine Kovner, Marilyn Hammer, Margaret Barton-Burke, Margaret McCabe, Elizabeth Cohn, Marie Marino, Liza Behrens
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- Journal:
- Journal of Clinical and Translational Science / Volume 1 / Issue S1 / September 2017
- Published online by Cambridge University Press:
- 10 May 2018, p. 48
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OBJECTIVES/SPECIFIC AIMS: The proposed pilot study seek to enhance the network of CTSAs at Rockefeller University, NYU, ISMMS, and other community members to support translational workforce development of clinical research nurses and establish a standardized nurse-specific training curriculum in GCP for use within the CTSA network, in other research centers, and in nursing school curricula. This will be coupled with a rigorous evaluation study to test the impact of the training and a comprehensive dissemination plan to make the training available to all nurses and nursing students via modern e-learning method. Aim 1. To create an integrated network of local CTSAs and community partners to develop, validate, and refine a pilot e-learning GCP educational and training program and content and outcomes dissemination plan. It is vital to integrate the efforts of CTSA leaders, community partners, and nursing educators to develop a pilot e-learning nurse workforce training curriculum and the associated evaluation measures and assessment plan. Delphi methods will be employed, coupled with rigorous assessment of face validity, content validity, and item reliability. The resulting educational training program will then be used for an e-learning educational intervention study in CTSAs, other sites, and nursing schools. Aim 2. To test the effect of the pilot GCP education and evaluation program for practicing clinical research nurses (CRNs) within the collaborating CTSAs and community partners, we will perform a randomized controlled trial using a Solomon 4 group design. For the student nurse population, we will develop a randomized control trial using a Solomon 4 group design blocked on course section. As this is a pilot study, descriptive statistics and confidence intervals around parameter estimates will be constructed. In addition, inferential statistics will be calculated on primary outcome of interest (change scores in knowledge of GCP) and measures of heterogeneity of data, patterns of missing data, and reliability of evaluative tools will be analyzed. Aim 3. To implement a dissemination plan to reach both nurses practicing the CRN specialty within CTSAs and other community settings. We will disseminate the program to other CTSAs through the CTSA network communication resources. To broaden the reach to a population of nurses and student nurses with limited prior education or training in nurse-specific GCP competencies, but who provide care to research participants in nontraditional research settings, we will craft a novel set of dissemination methods, including the CITI Program electronic platform that can be accessed by nurses and nursing students across settings. In addition, dissemination will be at nursing education meetings and in nursing journals.METHODS/STUDY POPULATION: There are several components to this pilot program. The component that includes a research strategy is the testing of the effectiveness of the training and educational interventions on GCP knowledge and efficacy. Study cohort: Recruitment of study subjects will be in coordination with 3 CTSA collaborators and community partners for 2 samples: (1) nurses who provide care to clinical research participants across a variety of settings (health care systems, research hospitals, and care provider networks) and who are already trained according to current standard in GCP, (2) nursing students from the collaborative network of the 3 CTSAs, NYU School of Nursing has agreed to pilot test the introductory student module. The methodological approach will be a random assignment control trial Solomon 4 group design for practicing CRNs within the collaborating CTSAs and community partners. For student nurse population, the methodological approach will be a randomized-control trial Solomon 4 group design blocked on course section. Survey measures of CRN GCP knowledge and efficacy will be obtained pre and post educational intervention. RESULTS/ANTICIPATED RESULTS: Aim 1. Expected outcomes are pilot e-learning nurse workforce training modules curriculum, and evaluation measures and plan appropriate for CTSAs, community sites, and nursing schools. Specifically, 14 modules (averaging 30 minutes each) for practicing CRNs, and one 45 minute module for nursing students. The significance of these findings will provide a framework for the e-learning educational intervention study. CITI Program is enthusiastic about the module development and refinement and will provide direction for consistency in formatting with current CITI Program modules, set-up of learner groups for comparison, and evaluative measures such as completion data and scoring. Aim 2. Expected outcomes are an effective pilot educational intervention for practicing nurses and students and valid and reliable evaluation tools and plan that can be generalized to the larger CRN and nursing community. Aim 3. Expected outcomes are an enhanced CTSA dissemination plan that includes non-CTSA resources and reaches non-CTSA employed nurses and nursing students. DISCUSSION/SIGNIFICANCE OF IMPACT: The expected outcomes of this pilot study are: (1) an enduring GCP education that can be continually updated and training structure for CRNs, and nurses and nursing students throughout the United States; (2) a reproducible effective standardized basic nurse-specific GCP curriculum for dissemination; (3) assessment tools to evaluate programmatic success, nurse and nursing student knowledge and efficacy on nurse-specific GCP; (4) and a CTSA dissemination plan that to reach non-CTSA nurses and nursing students. Our ultimate goal is the development of a translational workforce educated and competent in GCP at CTSA sites, at non-CTSA sites, and in nursing schools so as to improve the quality of clinical research.
Contributors
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- By Marino Baldi, Yas Banifatemi, Andrea K. Bjorklund, Laurence Boisson de Chazournes, Tomer Broude, Rudolf Dolzer, Roberto Echandi, Michael Ewing-Chow, Mary E. Footer, Susan D. Franck, Rainer Geiger, Stephen Gelb, Gary Clyde Hufbauer, Anna Joubin-Bret, Barton Legum, Tobias A. Lehmann, Céline Lévesque, Inna Manassyan, Sébastien Miroudot, Theodore H. Moran, Peter Muchlinski, Ioana Petculescu, Alexandros Ragoussis, August Reinisch, Pierre Sauvé, Christoph Schreuer, Lauge N. Skovgaard Poulsen, Debra P. Steger, Margrete Stevens, Christian Tietje, Anne Van Aaken, James Zhan
- Edited by Roberto Echandi, The World Bank, Pierre Sauvé
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- Book:
- Prospects in International Investment Law and Policy
- Published online:
- 05 April 2013
- Print publication:
- 18 April 2013, pp xi-xiv
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- By Shamsuddin Akhtar, Greg Albert, Sidney Allison, Muhammad Anwar, Haruo Arita, Amanda Barker, Mary Hanna Bekhit, Jeanna Blitz, Tyson Bolinske, David Burbulys, Asokumar Buvanendran, Gregory Cain, Keith A. Candiotti, Daniel B. Carr, Derek Chalmers, John Charney, Rex Cheng, Roger Chou, Keun Sam Chung, Anna Clebone, Frederick Conlin, Susan Dabu-Bondoc, Tiffany Denepitiya-Balicki, Jeanette Derdemezi, Anahat Kaur Dhillon, Ho Dzung, Juan Jose Egas, Stephen M. Eskaros, Zhuang T. Fang, Claudia R. Fernandez Robles, Victor A. Filadora, Ellen Flanagan, Dan Froicu, Allison Gandey, Nehal Gatha, Boris Gelman, Christopher Gharibo, Muhammad K. Ghori, Brian Ginsberg, Michael E. Goldberg, Jeff Gudin, Thomas Halaszynski, Martin Hale, Dorothea Hall, Craig T. Hartrick, Justin Hata, Lars E. Helgeson, Joe C. Hong, Richard W. Hong, Balazs Horvath, Eric S. Hsu, Gabriel Jacobs, Jonathan S. Jahr, Rongjie Jaing, Inderjeet Singh Julka, Zeev N. Kain, Clinton Kakazu, Kianusch Kiai, Mary Keyes, Michael M. Kim, Peter G. Lacouture, Ryan Lanier, Vivian K. Lee, Mark J. Lema, Oscar A. de Leon-Casasola, Imanuel Lerman, Philip Levin, Steven Levin, JinLei Li, Eric C. Lin, Sharon Lin, David A. Lindley, Ana M. Lobo, Marisa Lomanto, Mirjana Lovrincevic, Brenda C. McClain, Tariq Malik, Jure Marijic, Joseph Marino, Laura Mechtler, Alan Miller, Carly Miller, Amit Mirchandani, Sukanya Mitra, Fleurise Montecillo, James M. Moore, Debra E. Morrison, Philip F. Morway, Carsten Nadjat-Haiem, Hamid Nourmand, Dana Oprea, Sunil J. Panchal, Edward J. Park, Kathleen Ji Park, Kellie Park, Parisa Partownavid, Akta Patel, Bijal Patel, Komal D. Patel, Neesa Patel, Swati Patel, Paul M. Peloso, Danielle Perret, Anthony DePlato, Marjorie Podraza Stiegler, Despina Psillides, Mamatha Punjala, Johan Raeder, Siamak Rahman, Aziz M. Razzuk, Maggy G. Riad, Kristin L. Richards, R. Todd Rinnier, Ian W. Rodger, Joseph Rosa, Abraham Rosenbaum, Alireza Sadoughi, Veena Salgar, Leslie Schechter, Michael Seneca, Yasser F. Shaheen, James H. Shull, Elizabeth Sinatra, Raymond S. Sinatra, Neil Singla, Neil Sinha, Denis V. Snegovskikh, Dmitri Souzdalnitski, Julie Sramcik, Zoreh Steffens, Alexander Timchenko, Vadim Tokhner, Marc C. Torjman, Co T. Truong, Nalini Vadivelu, Ashley Vaughn, Anjali Vira, Eugene R. Viscusi, Dajie Wang, Shu-ming Wang, J. Michael Watkins-Pitchford, Steven J. Weisman, Ira Whitten, Bryan S. Williams, Jeremy M. Wong, Thomas Wong, Christopher Wray, Yaw Wu, Anthony T. Yarussi, Laurie Yonemoto, Bita H. Zadeh, Jill Zafar, Martha Zegarra, Keren Ziv
- Edited by Raymond S. Sinatra, Jonathan S. Jahr, University of California, Los Angeles, School of Medicine, J. Michael Watkins-Pitchford
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- Book:
- The Essence of Analgesia and Analgesics
- Published online:
- 06 December 2010
- Print publication:
- 14 October 2010, pp xi-xviii
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- By Amelia Evoli, Ami K. Mankodi, Ana Ferreiro, Anders Oldfors, Anne K. Lampe, Anneke J. van der Kooi, Bernard Brais, Bertrand Fontaine, Bjarne Udd, Carina Wallgren-Pettersson, Caroline A. Sewry, Carsten G. Bönnemann, Cecilia Jimenez-Mallebera, Chad Heatwole, Charles A. Thornton, Corrado Angelini, David Hilton-Jones, Doreen Fialho, Duygu Selcen, Edward J. Cupler, Emma Ciafaloni, Enrico Bertini, Eric A. Shoubridge, Eric Logigian, Erin O’Ferrall, Eugenio Mercuri, Franco Taroni, Frank L. Mastaglia, Frederic Relaix, George Karpati, Giovanni Meola, Gisèle Bonne, Hannah R. Briemberg, Hanns Lochmüller, Heinz Jungbluth, Ichizo Nishino, Jenny E. Morgan, John Day, John Vissing, John T. Kissel, Kate Bushby, Leslie Morrison, Maria J. Molnar, Marianne de Visser, Marinos C. Dalakas, Mary Kay Floeter, Mariz Vainzof, Maxwell S. Damian, Michael G. Hanna, Michael Rose, Michael Sinnreich, Michael Swash, Miranda D. Grounds, Mohammed Kian Salajegheh, Nigel G. Laing, Patrick F. Chinnery, Rabi Tawil, Rénald Gilbert, Richard Orrell, Robert C. Griggs, Roberto Massa, Saiju Jacob, Shannon L. Venance, Stefano Di Donato, Stella Mitrani-Rosenbaum, Stephen Gee, Stuart Viegas, Susan C. Brown, Tahseen Mozaffar, Tanja Taivassalo, Valeria A. Sansone, Violeta Mihaylova, Yaacov Anziska, Zohar Argov
- George Karpati, McGill University, Montréal
- Edited by David Hilton-Jones, Kate Bushby, Robert C. Griggs
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- Book:
- Disorders of Voluntary Muscle
- Published online:
- 26 February 2010
- Print publication:
- 21 January 2010, pp vii-x
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- By Nalini Vadivelu, Christian J. Whitney, Raymond S. Sinatra, M. Khurram Ghori, Yu-Fan (Robert) Zhang, Raymond S. Sinatra, Joshua Wellington, Yuan-Yi Chia, Francis J. Keefe, Jon McCormack, Ian Power, John Butterworth, P. M. Lavand’homme, M. F. De Kock, Bradley Urie, Oscar A. de Leon-Casasola, Frederick M. Perkins, Larry F. Chu, David Clark, Martin S. Angst, Cynthia M. Welchek, Lisa Mastrangelo, Raymond S. Sinatra, Richard Martinez, Scott S. Reuben, Asokumar Buvanendran, Raymond S. Sinatra, Pamela E Macintyre, Julia Coldrey, Daniel B. Maalouf, Spencer S. Liu, Susan Dabu-Bondoc, Samantha A. Franco, Raymond S. Sinatra, James Benonis, Jennifer Fortney, David Hardman, Gavin Martin, Holly Evans, Karen C. Nielsen, Marcy S. Tucker, Stephen M. Klein, Benjamin Sherman, Ikay Enu, Raymond S. Sinatra, James W. Heitz, Eugene R. Viscusi, Jonathan S. Jahr, Kofi N. Donkor, Raymond S. Sinatra, Manzo Suzuki, Johan Raeder, Vegard Dahl, Stefan Erceg, Keun Sam Chung, Kok-Yuen Ho, Tong J. Gan, Dermot R. Fitzgibbon, Paul Willoughby, Brian E. Harrington, Joseph Marino, Tariq M. Malik, Raymond S. Sinatra, Giorgio Ivani, Valeria Mossetti, Simona Italiano, Thomas M. Halaszynski, Nousheh Saidi, Javier Lopez, Kate Miller, Ferne Braveman, Jaya L. Varadarajan, Steven J. Weisman, Sukanya Mitra, Raymond S. Sinatra, Theodore J. Saclarides, Knox H. Todd, James R. Miner, Chris Pasero, Nancy Eksterowicz, Margo McCaffery, Leslie N. Schechter, Amr E. Abouleish, Govindaraj Ranganathan, Tee Yong Tan, Stephan A. Schug, Marie N. Hanna, Spencer S. Liu, Christopher L. Wu, Craig T. Hartrick, Garen Manvelian, Christine Miaskowski, Brian Durkin, Peter S. A. Glass
- Edited by Raymond S. Sinatra, Oscar A. de Leon-Cassasola, University of Rochester Medical Center, New York, Eugene R. Viscusi, Brian Ginsberg
- Foreword by Henry McQuay
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- Book:
- Acute Pain Management
- Published online:
- 26 October 2009
- Print publication:
- 27 April 2009, pp vii-xii
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