Completed Studies

New Emerging Team (PedPalNet): Transitions in Pediatric Palliative and End-of-Life Care

Investigators: Betty Davies, Hal Siden, Rose Steele, Susan Cadell, Lynn Straatman; Research Staff: Carly Fleming, Lisa Jacques, Gail Andrews, Lenore Omesi, Hayden Kremer

The specific objectives of the Pediatric Palliative Care NET (PedPalNet) Transitions in Pediatric Palliative and End of Life Care study are to: (1) foster cross-theme research in palliative and end of life care with an emphasis on a multidisciplinary approach, (2) create a team environment that favours the development of innovative research projects that will advance our understanding of palliative and end of life care, and (3) train and establish new investigators capable of undertaking research relevant to understanding palliative and end of life care.

In June 2003, the Canadian Institutes of Health Research (CIHR) and its partners launched a palliative and end-of-life care initiative that reflected the multiple needs of the palliative care research community. With a vision to ‘move beyond traditional boundaries of cancer palliative care by including other clinical disciplines’, the initiative was designed to support infrastructure development, enhance interdisciplinary research collaboration, encourage the development of early career researchers, and attract trainees to this emerging area.

One of the components of the initiative was a five-year New Emerging Team (NET) grant that was designed to build capacity and to promote the formation of new research teams or the growth of small existing teams. This initiative, along with the previously funded NET and Strategic Training Program, funded 19 pilot projects, 9 NETs, and one Career Transition Award for a total investment of $16.5 million over six years into palliative and end of life care research. Our proposal entitled Transitions in Pediatric Palliative and End of Life Care was the only pediatric team funded.

Children requiring palliative care suffer from a variety of physiologically diverse conditions that are variable in life expectancy and call for tailored treatments. This New Emerging Team program in Transitions in Pediatric Palliative and End of Life Care brings together a multidisciplinary Core Team and a cross-Canada and international network of dedicated experts to develop a sustainable research program focused on creating knowledge and evidence to optimize provision of care for children with life-limiting conditions and their families. Our research team fosters cross-theme, multidisciplinary research in palliative and end-of-life care; creates an exceptional team environment to foster innovative research and development of novel tools and methods; and builds capacity by supporting training and recruitment of researchers with unique expertise in issues of palliative and end-of-life care in pediatric and transitioning populations. With the support of the NET program, we are building on Canada’s pioneering work and the nation’s momentum in knowledge generation in pediatric palliative care, solidifying Canada’s reputation for leadership in children’s health services.

PedPalNet’s core team is comprised of experts who represent cross-pillar expertise and approaches from Clinical, Population Health, and Health Services & Systems themes. PedPalNet also unites an international consortium of researchers dedicated to improving pediatric palliative and end-of-life care based in major palliative care centres in Canada, the USA, and the UK.

The PedPalNet consortium engages in child-centered research in three overlapping thematic research areas: (1) Biomedical & Clinical Indicators, which addresses knowledge gaps in the trajectory of life-limiting conditions and in the management of the associated pain, nutritional health and respiratory symptoms; (2): Families, which explores the experiences of families on an individual family member and group level as they progress through both the transitions in their child’s illness and the natural biological and psychosocial developments; and (3) Health Services, which concentrates on identifying, refining, and describing the development, operations, and impact of pediatric palliative care programs in order to serve as a prototype for expanding the network of these programs.

In collaboration with the children, their families, and the community of caregivers, healthcare providers, and healthcare settings, we are (1) undertaking cross-sectional and longitudinal research that will create a holistic picture of transitions within the trajectory of children and families living with life-limiting conditions; (2) establishing and supporting new investigators and building capacity in pediatric palliative care by training clinician scientists and a critical mass of researchers from an array of disciplines; (3) creating an innovative model of collaborative work supported by best practices via electronic collaboration; (4) creating an evidence base for improved policy and practice; and (5) creating resources for all children, families, practitioners, health service providers, and policy makers.

Funding Agency

Canadian Institutes of Health Research (CIHR)

What We Have Learned

Research in pediatric palliative care has developed significantly over the past several years. It is imperative to continue to build capacity in pediatric palliative care research that will be sustainable and ongoing for the foreseeable future. Some specific objectives include the creation of a sustainable enterprise to support new and emerging research in the field that corresponds to three specific areas; biomedical/clinical, family, and health services. Tools such as a shared virtual electronic workspace, videoconferencing, and live symposia support this work. Future developments include a database that makes information accessible to investigators, institutions, and communities and an extension of the research themes into a wider age range, including the transition to adult healthcare services for adolescents with life-limiting diseases.

What’s Next

We have developed strong connections with many pediatric palliative care clinicians and researchers and have many plans for future research. A renewal is in process for a study about parental caregiving when a child has a life-limiting illness and that renewal will be expanded to include bereaved parents. Multiple poster and paper presentations have been made about the initial study and a manuscript is in progress. We have recently received finding for a five year, longitudinal, multi-site study to document the trajectory of children and their families when a child has a quadrant three neurodegenerative, metabolic, or genetic disease. This study is only beginning to get underway.

An article about the PedPalNet is currently in press:

Straatman, L., Cadell, S., Davies, B., Siden, H., & Steele, R. (in press). Pediatric palliative care research in Canada: Development and progress of a New Emerging Team [Commentary]. Paediatrics & Child Health, 13(7) .

Results from a Delphi study that was undertaken through internal funds to identify research priorities in Canada for pediatric palliative care is currently in press:

Steele, R., Bosma, H., Fletcher Johnston, M., Cadell, S., Davies, B., Siden, H., & Straatman, L. (in press). Research priorities in pediatric palliative care: A Delphi study. Journal of Palliative Care.