Though perhaps unorthodox for this journal to publish an abstract before the availability of data to share, we did not want to miss the opportunity to inform readers about this important cross-Canada effort to improve palliative care for children. We look forward to learning about the results of this project as they become available.
Dr Noni MacDonald
Editor-in-Chief, Paediatrics & Child Health
It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little training in PC (2), and bereaved parents continue to report suboptimal care throughout the disease course (3,4). It is crucial that all health professionals caring for children with cancer receive comprehensive education about evidence-based PC and support to implement new knowledge. To achieve these goals, we will implement a national ‘roll-out’ of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘train-the-trainer’ model.
OBJECTIVES
The effectiveness of our EPEC-Pediatrics roll-out will be assessed in four areas using a pre-post test design: knowledge of health professionals who participate in the curriculum; knowledge dissemination outcomes (eg, number of health professionals trained); practice change outcomes; and the quality of PC provided to children and families.
INTERVENTION
We will train five Canadian EPEC-Pediatrics ‘master facilitators’ who will then train ‘regional teams’. Regional teams will consist of five health professionals representing oncology, PC and the community (eg, home care nurses, community paediatricians) affiliated with each of the 16 paediatric oncology programs in Canada. Team members will complete online modules and attend one of two in-person conferences focused on how to effectively teach EPEC-Pediatrics. Regional teams will return to their communities with all materials needed to teach EPEC-Pediatrics to ‘end-users’ (ie, anyone involved in caring for children with cancer). Each team will also select a tailored implementation of practice standards (TIPS) kit to guide implementation of a quality improvement (QI) project in their region. Teams will be supported to deliver the education sessions and conduct QI projects via a list-serv, quarterly meetings with project co-leads and webinars with other teams to share experiences.
METHODS
EPEC-Pediatrics will be rolled out over an 18-month period, with the pre-test period beginning in fall 2014. Data collection and analysis will occur in four areas. First, regional team members and end-users will complete surveys to self-assess changes in knowledge after each module. Second, regional teams will track the type and number of modules taught and the number of end-users reached. Third, regional teams will provide quarterly progress reports about their QI projects. Finally, the quality of PC will be assessed using data from three sources: parent and child surveys about symptoms, quality of life and care provided; health record reviews of deceased patients; and bereaved parent surveys about end-of-life and bereavement care.
EXPECTED OUTCOMES
In addition to expected improvements in health professional knowledge and quality of PC, our goal is to have a minimum of 600 multiprofessional end-users complete at least one module and 10 regional teams successfully attain their practice improvement goals. Based on the anticipated success of our study, we will expand the EPEC-Pediatrics roll-out to health professionals who care for children with other life-threatening conditions. We will continue to enhance the quality of PC for all children with life-threatening illnesses and their families, regardless of illness outcome, across all care settings.
Acknowledgments
This project is funded by the Canadian Partnership Against Cancer. Dr Widger is supported by a Career Development Award from the Canadian Child Health Clinician Scientist Program.
REFERENCES
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