Principal Investigator(s): Dr. Carole Robinson, School of Nursing, Faculty of Health and Social Development, UBC Okanagan
Partner(s): Ms. June Hope, Hospice Coordinator, Princeton & District Palliative Care Society
Family caregivers are the backbone of palliative care. While there are rewards associated with caring at home, particularly towards end of life, there are also challenges. Canadian society is aging and more Canadians are living longer with chronic illness, which means the demand for care at home is predicted to increase dramatically. Family caregivers are dedicated and committed; however, they struggle with being unprepared and inadequately supported. They have difficulty identifying the caregiving decisions they must make or how to go about making those decisions. Interventions that effectively support this vulnerable population are needed. This study involves the pilot of a family palliative caregiver decision support guide that has been developed to educate, prepare, and support decision making over time. The utility and effectiveness of the guide will be evaluated in a rural setting using volunteers and in an urban setting using palliative nurses. Optimal implementation strategies will be identified.
An interactive version of the Caregiver Decision Guide is now available at https://www.caregiverdecisionguide.ca/.
Additionally, an artice describing the development, evaluation, and utility of the Family Caregiver Decision Guide was published in Qualitative Health Research and is available at https://doi.org/10.1177/1049732319887166.