By Betty Davies, RN, PhD

The opportunities, joys and rewards of conducting research in pediatric palliative care are many, but researchers also face a challenging level of complexity when studying children with life-limiting illness and their families. To study within this complex, sensitive health care realm, our research team took an integrated approach. Transitions in Pediatric Palliative and End of Life Care (PedPalNET) was created following a call for proposals by the Canadian Institutes of Health Research (CIHR) to develop collaborative, multidisciplinary research teams organized around particular areas of study in palliative care.

Of the nine teams funded across Canada in 2004, ours was the only one focused on pediatrics. Our New Emerging Team brought together a multidisciplinary Core Team (nurses, physicians and social worker). In collaboration with the children, their families, and the community of caregivers, healthcare providers, and healthcare settings, we created an innovative collaborative multi-disciplinary/multi-institutional model of work supported by best practices via electronic
collaboration. Together, we undertook cross-sectional and longitudinal research to create a holistic picture of transitions within the trajectory of children and families living with life-limiting conditions; established and supported new investigators and built capacity in pediatric palliative care by training clinician scientists and a critical mass of researchers from an array of disciplines; and, contributed to an evidence base for improved policy and practice.

The PedPalNET initiative resulted in additional funding to continue working in this field after the original NET funding ended. Notably, Charting the Territory linked six clinical centres across Canada and five academic institutions to collaborate on a longitudinal study of children with life-threatening metabolic, genetic and neurological conditions. The original Parent Caregiver grant to study growth and strength among parents and its subsequent renewal exemplifies interdisciplinary research with researchers from health care, medical anthropology and health economics. The Best Practices grant seeks to understand “best practices” in parent/provider interactions and relationships. These three grants are ongoing with data collection and publication of relevant
results in pediatric palliative care.

In addition, PedPalNET built a critical mass of researchers and clinicians to participate in these studies. By establishing and training clinicians and training and mentoring new students, the network continued to expand capacity at “clinical research centres.” To maintain the momentum built by the original NET, our current Catalyst grant from CIHR (PedPalASCNET: Accessible, Sustainable and Collaborative), enables us to develop clinician-researchers and clinician knowledge brokers at each of the major care centres across Canada. We are establishing a new platform of technology to bring the network members together, link current networks to the new network on a national and international level, formally establish and expand the Canadian network through research collaborations, and provide knowledge translation through various tools, such as Canadian Virtual Hospice. By building on its previously successful collaborative model, the NET will continue to grow and link researchers and clinicians in a successful clinician-researcher model of inquiry and resulting in collaborative research that will optimize the care provided to children and families in pediatric palliative care.

Betty Davies is Professor and Senior Scholar at the UVic School of Nursing.

From the 2013 Spring Communiqué — Palliative Care