Studies In Progress

Transitions in pediatric palliative and end of life care

Investigators and Staff: Betty Davies, Hal Siden, Rose Steele, Susan Cadell, Lynn Straatman, Carly Fleming

The purpose of this internally funded pilot study was to describe the experiences of children and families as they transitioned into the Canuck Place Hospice program.

The need for focused research in pediatric palliative care is clearly acknowledged by experts in the field. The development of guidelines for palliative care for children living with a life-threatening, life-limiting, or terminal illness is still in its relative infancy. Evidence is needed to guide the development and implementation of clinical policies and minimum standards promoting optimal care for children suffering from life-limiting conditions and their families. In order to provide this necessary evidence, longitudinal research that includes the bio-psychosocial and spiritual dimensions of the experience of children, families, and healthcare providers in the various transitions in pediatric palliative care is required. However, in order to lay the foundations for these longitudinal projects, preliminary data must be gathered and instruments must be tested in the pediatric population. This study represents a first step in gathering these data by describing the experience of families as they transition into the Canuck Place Children’s Hospice program.

The purpose of this study was to describe the experiences of children and families during the transition into one specific pediatric hospice palliative care program. This was a pilot project, designed to gather preliminary data and serve as an initial endeavor for a newly funded New Emerging Team (NET) in pediatric palliative care. The objectives of the proposed project were three-fold: (1) to examine the experiences of children and families as they transitioned into the Canuck Place Children’s Hospice program, (2) to explore the perspectives of health care professionals involved in the care of patients/families who transitioned into the Canuck Place pediatric hospice palliative care program, and (3) to describe the symptoms and symptom management of children during the transition into the Canuck Place pediatric hospice palliative care program. Results from objectives (1) and (2) have been published.

Funding Agency

Internal

What We Learned

At the point of transition to a pediatric palliative care hospice program, families are overwhelmed with the stress and strain of caregiving. They are generally seeking respite rather than end-of-life care. Parents experience numerous changes in perception before, during, and after the transition.

What’s Next

Two manuscript describing findings have been published and a larger project based on the findings is under development.

References

Steele, R., Derman, S., Cadell, S., Davies, B; Siden, H., & Straatman, L. (2008). Families’ transition to a Canadian paediatric hospice: Part two: Results of a pilot study. International Journal of Palliative Nursing, 14(6), 287-295.

Steele, R., Derman, S., Cadell, S., Davies, B; Siden, H., & Straatman, L. (2008). Families’ transition to a Canadian paediatric hospice. Part one: Planning a pilot study. International Journal of Palliative Nursing, 14(5), 248-256.