Studies In Progress

Careful Transitions:  Developing an Integrated Service Delivery Model for Paediatric Palliative Care

Investigators & Staff: Laura Beaune, David Nicholas, Maru Barrera, Eric Bouffet, Christine Newman, Maria Rugg, Margot Jeffrey, Deborah Adams, Andrea Wheat, Dipti Purbhoo, Kim Widger, Frank Wagner, Anu Chahauver

Does an integrated and coordinated model of care help improve the care of children with life limiting illnesses during palliation and end-of-life?  Through this research we will test the feasibility of a coordinated and integrated system model of care that supports a dying child and his/her family when moving between home, hospital or hospice.

Funding Agency

The HSC Foundation – National Child and Youth Home Care Competition Grant (October 2005 – September 2007) $130,000.00

Summary

Does an integrated and coordinated model of care help improve the care of children with life limiting illnesses during palliation and end-of-life?  Through this research we will test the feasibility of a coordinated and integrated system model of care that supports a dying child and his/her family when moving between home, hospital or hospice.

Eight to ten families having a child with any life limiting illness and who live in the Toronto area will be recruited for this pilot. Families will have been referred to the Palliative and Bereavement Care Service at SickKids as well as the Temmy Latner Centre for Palliative Care at Mt. Sinai Hospital.

This study will use several tools over 4 time periods to collect information about the child and family’s health including information about:  the child’s pain and symptoms, child functioning, quality of life and satisfaction with health care services. After the collection of this data focus groups with parents and health care providers will also help us understand more about the experience of being in this study.

What we Learned

In progress.

What’s Next

In progress.

References

Antle BJ, Gorman E, Cottingham D, et al. Can we ease the burden?: A qualitative study of parents experiences of end-of-life decision making. Journal of Palliative Care. 2002;18(3):211.

Antle BJ, Lach L, Hansen J, Frazee C, Yoshida K. Social experiences in school: perceptions of students with physical disabilities and chronic health conditions perceptions of students with physical disabilities, chronic health conditions and their peers:  Final report. Toronto, Canada: Bloorview Children’s Hospital Foundation; 2004.

Barrera M, D’Agostino NM, Gammon J, Baruchel S. Health-related quality of life and decision making regarding phase 1 trials: Parent and child perspectives.  poster presentation. Paper presented at: 34th Congress of the International Society of Pediatric Oncology, 2002; Porto, Portugal.

Dangel T, Fowler-Kerry S, Karwacki M, Bereda J. An evaluation of a home palliative care programme for children. Ambulatory Child Health. 2000;6:101-114.

Gilmer MJ. Pediatric palliative care: a family-centered model for critical care. Critical Care Nursing Clinics of North America. 2002;14(2):207-214.

Hinds PS, Oakes L, Furman W, et al. End of life decision making by adolescents, parents and health care providers in pediatric oncology. Cancer Nursing. 2001;24(2):122-134.

King G-A, Rosenbaum PL, King SM. Evaluating family-centred service using a measure of parents’ perceptions. Child: Care, Health and Development. 1997;23(1):47-62.

Lindeke LL, Leonard BJ, Presler B, Garwick A. Family-centered care coordination for children with special needs across multiple settings. Journal of Pediatric Health Care. 2002;16(6):290-297.