Completed Studies

An analysis of patient and family flow in pediatric palliative

Investigators and Staff: David Brown, Hal Siden, Susan Cadell, Gail Andrews, Lenore Omesi [PedPalNet members who were additional co-applicants for the initial development grant: Betty Davies, Rose Steele, and Lynn Straatman]

The PedPalNet received a UBC Development Grant to prepare a proposal for a study to describe the flow of patients through numerous locations and services in the community, hospitals, and hospice. Funding for a full study was not received, but a pilot project is currently underway at Canuck Place Children’s Hospice in conjunction with the CHOP/PACT study.

This pilot project builds on the UBC Development Grant which was awarded in 2005. One of the initial grant applicants collaborated with other researchers for this more recent project (2008).

Pediatric palliative care is an emerging field that addresses the needs of children and families living with progressive life threatening conditions. For children with these complex conditions, it is the norm that multiple, and often poorly coordinated, teams provide care across a spectrum of community providers, agencies, and hospitals. The system has been described as chaotic, unknown, and/or highly arbitrary by families and health care professionals; a lack of understanding of this complex system has been identified as a significant barrier to effective care. There have been few attempts to study how children and families living with complex life threatening conditions use the health care system. This type of health services analysis is a core component of understanding pediatric palliative care; however no such published research exists.

This ongoing research has occurred under the auspices of the CIHR-funded New Emerging Team (PedPalNet) grant entitled ‘Transitions in Pediatric Palliative and End-of-Life Care’. The mandate of PedPalNet is to develop a sustainable research program to optimize care for children with life threatening conditions in three thematic areas: biomedical/clinical, psychosocial, and health services. The Process Maps in Pediatric Palliative Care study advances the agenda of PedPalNet by bringing health services research to the field of pediatric palliative care and by forging new collaborative links.

This pilot study is the first phase of a multi-phase research program to better understand and improve the health care experiences of children and families living with life threatening conditions. This research program will provide information regarding process knowledge in order to identify gaps in patient flow, barriers, and system problems with the eventual goal of instituting improvements on a system level. This first phase will lay the foundation for the research program by developing a tool for representing patient flow in the pediatric palliative care system.

This study investigates whether and how patients with different characteristics access system resources in different ways. It will help identify impediments to patients and families acquiring services in a timely manner and will provide a basis for subsequent intervention studies. The results of this study will contribute greatly to knowledge in the area of pediatric health services and will provide highly relevant data to patients, families, service providers, and decision-makers. Results will be applicable to many other areas of health services research involving complex chronic care and will provide data and develop a tool in a heretofore unexplored field.

This pilot study has used the operations management technique of process mapping to describe the flow of pediatric palliative care patients through numerous locations and services in the community, hospitals, and hospice. Process maps graphically represent the flow of units, resources, and information through a system. The technique of developing process maps is novel in the setting of pediatric palliative care research. Data collection has been completed and analysis is underway.

Funding Agency

Internal.

What We Learned

The complexity of pediatric palliative care delivery is a challenge to unravel and document. New approaches to process mapping must be developed for this important area of health care. Results from this pilot project are not yet available as the study is ongoing; data collection complete, analysis underway.