Publication DateTuesday, November 5, 2013 - 14:15
Type of PracticePromising
CategoryHuman Resources Service Delivery
This practice was recognized as a Promising Practice by the Health Council of Canada using the Health Innovation Portal Evaluation Framework
This innovative practice supports the integrated care of both care receivers and care givers by offering a framework for engaging caregivers in a discussion about their concerns and expectations. This multidimensional psycho-social instrument was initially piloted in 2001 with practitioners in Quebec and Nova Scotia working in publicly funded agencies responsible for coordinating home care services.
The well-being of family caregivers is a growing public health issue, and yet they have little formal status and access to the health and social service system in their own right. While practitioners are aware of the challenges caregivers face, they are challenged to provide integrated care to both the patient and the caregiver.
In response to this, the Caregivers’ Aspirations, Realities and Expectations (C.A.R.E.) Tool was developed in 2001 for practitioners as part of an initiative focused on developing appropriate, evidence-informed instruments for assessing and evaluating the specific needs of family caregivers. The C.A.R.E. Tool provides a framework for a conversation between practitioners and caregivers about the caregivers’ potential concerns and expectations, while providing insight into the caregiving situation and ways to integrate the support of the caregiver with that of the care recipient.
The original tool was developed in 1999/2000 and assessed to ensure relevance and reliability. It was developed with input from family caregivers and after examining close to 100 other instruments. None of the other instruments addressed a range of caregiver issues, which was the aim of the C.A.R.E. Tool. The Tool is available in both English and French, and training for practitioners to use the tool is required.
Overall, the C.A.R.E. Tool enhances the assessment skills of practitioners and their understanding of the needs of caregivers, while improving their capacity to support caregivers and care recipients. It is hoped that these discussions will lead to a more integrated approach to supporting care receivers and caregivers, as well as greater recognition of the role played by caregivers in the health system.
The C.A.R.E. Tool has been used in a number of research studies and evaluation initiatives since its development in an effort to understand its utility in practice and its impact with different caregiver populations. The draft instrument was piloted with over 150 caregivers through home care practitioners from seven agencies in Quebec and Nova Scotia. Results from the pilot were used to refine the tool, which was further condensed in 2007 through a contract with Health Canada. In several studies, caregivers have reported benefits such as having the opportunity to share their experience with a professional, feeling comfortable identifying their own needs and concerns, having their experiences validated, and becoming increasingly aware of information about support services.
In a study involving nursing students, using the tool increased their awareness of the realities of older spouse caregivers, provided information on available resources, and helped them understand the role they have as a health care professional in supporting caregivers. The body of evidence suggests the C.A.R.E. Tool as a stand-alone intervention has positive implications for the caregiver and practitioner, increasing practitioners’ appreciation of caregivers’ situations, enhancing caregiver-practitioner relationships, and providing evidence to support referrals to services and supports for caregivers.
There is no fee to access the C.A.R.E. Tool, although implementation may carry costs involved with one-time training (in person or online). For a project with Alberta Health Services (AHS), $213 was the estimated cost of completing a caregiver assessment based on the salary rates of coordinators (RNs), travel allowance, and the average length of time required.
The C.A.R.E. Tool is currently in use in several agencies in Quebec, as well as by practitioners in Nova Scotia, Ontario, and Alberta. It has also been culturally adapted for use in France and New Jersey.
The tool was used in 2011/12 as part of a Caregiver Support and Enhanced Respite Pilot Project led by AHS. Its use in this context showed findings similar to those of previous studies. Caregiver assessment had positive outcomes for caregivers—they became more aware of their role, began to consider their own needs, gained a better understanding of their situation and how caregiving was affecting them, and became more accepting of support and information. Likewise, the Home Care Coordinators reported a greater appreciation of the caregiver situation and used the results of the caregiver assessment as a decision support tool to provide rationale for referrals to respite services and other community services.
While originally conceived for use by home care programs, the C.A.R.E. Tool has been used in hospitals and by community organizations (including the Alzheimer’s Society and community care giver groups), and with a wide variety of caregivers, including those caring for the elderly or for adults with disabilities or mental health issues. The tool was recently used as part of an initiative to understand the experience of spouses caring for persons with dementia.
A major challenge for implementing this tool is that caregivers are not always formally recognized in the system. This can make it difficult for practitioners to engage them in the assessment, or even to recognize the need for their involvement. As well, concerns about time to conduct a comprehensive assessment and the inability to meet expectations that may arise have also been identified as challenges.
To facilitate future implementation of the C.A.R.E. tool, it is believed that caregivers must become an agency priority, the purpose and use of the Tool should be clearly defined, the Tool should be integrated with existing tools, staff should be brought on board from the outset, and training must be assured.
Name: Nancy Guberman
Title: Retired Professor of Social Work
Organization: University of Quebec in Montreal
Telephone number: 514-276-6236
Information last updated on: July 16, 2013
Content has been adapted from the following sources and relevant links:
Guberman, N., & Fancey, P. (review and feedback, July 2013).
Keefe, J., Guberman, N., Fancey, P., Barylak, L., &Nahmiash, D. (2008). Caregivers’ Aspirations, Realities, and Expectations: The C.A.R.E. Tool. Journal of Applied Gerontology, 27(3), 286–308.
Guberman, N., Keefe, J., Barylak, L., & Fancey, P. (2007). “Not another form!”: Lessons for implementing caregiver assessment in health and social service agencies. Health and Social Care in the Community, 15(6), 577–587.