(Edmonton) An interactive toolkit created by a team from the University of Alberta helps palliative care patients and their care providers to deal with the physical, emotional and relationship changes that come with terminal and chronic illnesses.
The Changes Toolkit is designed to engage patients and care providers at a time when many feel isolated and overwhelmed. The print and online resource provides a foundation to start conversations and answer questions about health and life changes, goals of care, and living wills, and helps organize information like medical histories and appointments.
"There are activities throughout the toolkit designed to actively engage patients and help them make decisions while building on their own strengths," said Wendy Duggleby, lead researcher and Nursing Research Chair in Aging and Quality of Life at the U of A. By helping patients, families and caregivers understand end-of-life changes, the toolkit helps them deal with those changes, which are significant, she said.
"The whole idea with supporting patients and caregivers throughout these life transitions is to ensure a better outcome for patients and their family."
Duggleby, a recognized leader in improving quality of life and care for palliative care patients in Canada, announced the launch of an online version of the Changes Toolkit during National Nursing Week. The expanded reach means the resource will bring comfort to patients and families across the globe—at no cost.
The Changes Toolkit was developed after Duggleby researched palliative care in rural communities. Because it's designed to be self-administered, the toolkit helps patients and families regardless of location.
Duggleby is collaborating with Alberta Health Services to test the toolkit in both rural and urban areas. Her team is also working on creating a version for family members and caregivers of people with dementia. There's potential for partnerships with not-for-profit organizations to adapt the toolkit for First Nations and other populations.
AHS is supportive of the toolkit and sees great value for Albertans, said David O'Brien, vice-president of seniors' health.
"Front-line caregivers have reviewed the tools and believe they will be valuable for patients and their families across the province," O'Brien said. "The toolkit will help Albertans to navigate the very emotional and difficult end-of-life journey in a positive way—that is a very good thing."
Duggleby said the toolkit has also been well received by patients and their families, who say they would recommend it to others.
"It helps patients understand they're not alone and that there's help available. It can be difficult to talk about end of life for patients and families, and that's where this toolkit helps. It can start conversations and answer tough questions. It brings peace of mind."
The Changes Toolkit was developed with a pan-Canadian multidisciplinary research team and collaborators, with funding support from the Canadian Institutes of Health Research and Alberta Health and Wellness End of Life Strategic Initiatives.
The toolkit can be viewed at www.changestoolkit.ca.