McMaster University

McMaster University

Caregiver-Friendly Workplace Policies:
Examining Canada's Compassionate Care Benefit (CCB)

Welcome to the Caregiver-Friendly Workplace Policies Research Program website. This site contains information about the interdisciplinary research studies lead by Dr. Allison Williams (Principal Investigator) on the Canadian Compassionate Care Benefit (CCB), a contributory Employment Insurance (EI) program unveiled in 1994 and identified as the first substantial Federal program for caregiver-employees. The evaluative research presented on this site has identified a number of shortcomings of the CCB but, recognizing these limitations, the CCB also represents a good start as a population health intervention that addresses the determinants of employee-caregiver health, given the burden experienced for those in the dual roles of employee and informal caregiver. This research sets the stage for other caregiver-employee health interventions in the workplace and, in so doing, builds on an intersectoral approach to supporting and sustaining the health of caregiver-employees. Please take your time reviewing the site and visit often, as regular updates will be made! Thank you for your interest.

  • Information on CCB
  • Evaluation of the CCB (Study Details)
  • Resources (Study Outcomes)
  • Media

Evaluation of the CCB (Study Details)

An Evaluation of Canada's Compassionate Care Benefit from a Family Caregiver's Perspective

Team Members (Co-Investigators)


Study Objectives

The goal of this study was to evaluate the CCB from the perspective of family caregivers (FCGs). Based on a successful pilot evaluation undertaken in 2005 (see Williams et al., 2005b), this study used Patton's (1997) comprehensive utilizationfocused approach to evaluation. To this end, there were three specific research objectives: (1) to examine the usefulness of the CCB for FCGs providing P/EoL care and determine those elements of the program that can be changed/refined to better support their needs; (2) to explore front-line palliative care practitioners' perceptions of the CCB, including the barriers and facilitators to use, and how they determine whether or not to recommend the CCB to FCGs on a case-by-case basis; and (3) to investigate barriers and facilitators inherent in the organization of specific workplaces and the labour market in general that shape uptake of the CCB from the perspective of employers and human resources personnel. Meeting these objectives addressed our study purpose, which was to make policy-relevant recommendations which are informed by the needs of Canadian FCGs and input from other key stakeholders who shape program uptake.


Methods & Measures

A qualitative approach was used to collect data from each of the three targeted samples: Respondent Group #1: Family Caregivers (FCGs)who are providing or who have provided P/EoL care We conducted 57 in-depth phone interviews with three categories of FCGs: (1) successful applicants; (2) unsuccessful applicants; and (3) nonapplicants (IE: retired, self-employed, or unemployed). We conducted interviews with FCGs from each group in each of the five provinces selected (British Columbia, Manitoba, Newfoundland, Ontario, and Quebec). The interviews addressed the following: (a) to what extent FCGs are satisfied with the CCB; (b) perceived strengths of the CCB; (c) recommendations for improving the CCB; (d) FCGs experiences of employers' responses to taking leave; and (e) the logistical elements of applying for and/or receiving the CCB. Respondent Group #2: Front-line palliative care practitioners For the purpose of this study, we defined this group as clinicians (e.g. nurses, nurse practitioners, GPs, palliative care specialists), social workers, bereavement councillors, and P/EoL coordinators/program managers. We conducted phone interviews with 50 key informants, approximately ten in each of the five provinces sampled. The interviews addressed the following: (a) perceptions of the CCB's usefulness and barriers/facilitators to access; (b) experience of recommending the CCB to a client/client's family; (c) working knowledge of the CCB's administration and eligibility requirements; and (d) suggestions for improvement. Respondent Group #3: Human resources personnel and employers Focus groups were held with human resources personnel and employers, one in each of the five study provinces. Five focus groups were run with 27 HR professionals/employers and were facilitated by a project investigator. Topics covered in the focus groups include: (a) perceptions of the CCB's usefulness and barriers/facilitators to access; (b) experience with having an employee uptake the CCB; (c) working knowledge of the CCB's administration and eligibility requirements; (d) strategies for supporting employees who are providing P/EoL care while involved in paid labour; and (e) suggestions for improvement. Analysis of all data was guided by the constant comparative technique.


Lay Summary of Key Findings

The rapid aging of Canada's population has occurred across a backdrop of fundamental shifts in health care service delivery, resulting in an increasing number of Canadians providing end-of-life care for their family members at home. In response to the anticipated demand for family caregiving at the end-of-life, the Canadian government introduced the Compassionate Care Benefit (CCB) program in January 2004. The primary goal of the CCB is to provide income assistance and job security to family members and friends who take temporary leave from regular employment to care for a terminally ill person at risk of dying. This study's overall purpose is to offer policy-relevant recommendations that are informed by the needs of Canadian family caregivers by gathering input from multiple stakeholders; family caregivers, front-line palliative care providers and human resource personnel/employers. From across all three stakeholder groups, five common suggestions for improving the CCB have been identified: 1. Implement a CCB awareness campaign that targets all stakeholder groups and the Canadian public simultaneously through a range of formats; 2. Improve the application process to be quicker, simpler, and more sensitive to the stressful and emotional realities of CCB applicants; 3. Eliminate the required two-week unpaid waiting period; 4. Lengthen the period of support to allow for: flexibility because of the challenges in prognosticating death, a more reflective and not rushed palliative process, and caregivers to extend the paid leave after death to include time for bereavement; and 5. Increase the financial assistance to more adequately reflect the ‘real' costs endured by family caregivers when taking time off work to provide end-of-life care. This study has aimed to provide policymakers with the information required on how to improve the CCB program and better meet the needs of family caregivers in Canada.


Key Findings

From across all three stakeholder groups (FGS, front-line palliative care providers, and human resource personnel/employers), five common suggestions for improving the CCB were identified: (1) Implement a CCB awareness campaign that targets all stakeholder groups and the Canadian public simultaneously through a range of formats; (2) Improve the application process to be quicker, simpler, and more sensitive to the stressful and emotional realities of CCB applicants; (3) Eliminate the required two-week unpaid waiting period; (4) Lengthen the period of support to allow for flexibility because of the challenges in prognosticating death, a more reflective and not rushed palliative process, and caregivers to extend the paid leave after death to include time for bereavement; and (5) Increase the financial assistance to more adequately reflect the ‘real' costs endured by family caregivers when taking time off work to provide end-of-life care. While these findings were common across all three stakeholder groups, each analysis of the data collected for individual stakeholder group also yielded relevant results. Generally, FCG successful applicants of the CCB found the application process to be relatively straightforward and clear, although some experienced challenges acquiring the required letters from their employers and physicians. Many of these applicants had someone directly assist them with the application process, often a social worker or Service Canada employee, which reduced the burden of having to navigate the forms and process alone. Successful applicants generally felt supported by their employers and coworkers; however, some negative consequences of taking a caregiving leave were reported, such as the loss of wages, a change in employment position upon return to work, and loss of contributions towards pensions during the leave. Successful applicants also found the two week waiting period difficult to endure as there was no income support during this time period. Yet, the greatest struggle of the CCB experience, as identified by successful applicants, was determining when to begin the benefit. This was the main factor which led to the ineligibility of participants who were unsuccessful with their applications to the CCB program. In these cases the dying family member had died during the application process or the two week waiting period, thus rendering them ineligible for the benefit. Front line palliative care explained that a primary role of their jobs involves “asking questions” and “assessing” each family's situation in order understand what is needed and when and how to share information with them. It was also revealed in the interviews that sometimes front-line providers also choose not to inform family caregivers about the CCB for a number of reasons, including its association with financial need and the reality that some family members might not be mentally or emotionally ready to acknowledge that end-of-life is near for the care recipient. Palliative care providers' working knowledge about the CCB program was typically minimal. Many were surprised that no one had recognized their key role in sharing program details and ensuring that front-line palliative care providers become informed about the CCB. Frustration was expressed over the fact that they were expected to seek out this information independently, especially considering their busy and constrained work schedules. Employers and HR personnel reported that employees with family caregiving responsibilities had sometimes involved them in the application process to the CCB. While many participants interviewed had experience with regular Employment Insurance applications, few knew about the CCB prior to the research study. Employers reported that the CCB interfered with their workplace productivity, as they needed to find temporary replacement staff while the caregiver was on leave. The fact that the CCB's six week period can be taken out of succession posed further potential complications for employers. Both the applicant's position within the company and the size of the workplace had an effect on the CCB's impact within the company. The CCB also had different impacts on companies of different sizes. Smaller workplaces might struggle to offer the same flexibility around leave policies when compared to larger workplaces where replacement staff is more readily available and workplace productivity not as affected by absent employees. Larger workplaces may also have a greater ability to integrate the CCB into their policies because of their established HR departments. At the same time, smaller workplaces discussed how they were unlikely to have to manage multiple applicants at the same time due to their smaller workforce.


Implications and Impacts

Concerns have been raised about the design and implementation of the CCB. A recent review of the CCB by The Health Council of Canada (Osborne & Margo, 2005) has noted that one of the CCB's most significant issues is its problematically low uptake. For example, less than 4% of the amount budgeted for the CCB was claimed in 2004-05. The Canadian Caregivers Coalition (2004) is calling for an amendment in order to recognize and provide income assistance to FCGs who are providing P/EoL care to long-term care recipients. Further, the Canadian Women's Health Network (Armstrong & O'Grady, 2004) has pointed out the gender-based disadvantage inherent in the program in that women are more likely to be ineligible for CCB income support because they are more likely to be stay-at-home parents and part-time workers who do not meet the CCB's eligibility criteria. Following this, our pilot evaluation highlighted the difficulties that long-term caregivers, most of whom are women, have in accessing the CCB to provide P/EoL care (see Williams et al., under review). The research conducted here was the first study that captured FCGs' experiences and perceptions of the CCB while gathering contextual data with front-line palliative care practitioners, employers, and human resources personnel; consequently, we are in a unique position to provide policy solutions/recommendations that address these and other concerns. The five recommendations common across all stakeholder groups, and the detailed findings listed in the “Key Findings” section of this report will potentially inform future policy changes. As such, the results were prepared and dissemination in 2010 to policymakers via invited presentations to the Parliamentary Committee on Palliative and Compassionate Care, as well as to parliamentarians invited to a luncheon addressing caregiver issues (organized by the Canadian Cancer Society in the West Block, Parliament Buildings, Ottawa). Additional research dissemination has occurred through the ETF as P/EoL advocates, through a lay report (Available in English and French) and via traditional scientific publications and conferences. Finally, the overriding mandate of CIHR is to assist “in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system” (CIHR, 2004). Through this project we have contributed to addressing this mandate. By evaluating the CCB from a FCGs perspective, we have better understood how to improve this federal program; a program that can assist in providing some of the resources needed to assist family members with providing P/EoL care, the provision of which has implications for the health and wellness of caregivers and the health care of care recipients. In addition to providing numerous suggestions on how to improve the CCB, the results of the present evaluation also provide valuable data to inform the development of other caregiver programs which aim to alleviate the burdens experienced by family caregivers. As well, the unique methodology, incorporating the use of an evaluation taskforce, and the triangulation of multiple stakeholder group's experiences and expectations is valuable for other researchers conducting research with the intent to make policy recommendations.


Contribution of Findings

This research has been instrumental in raising awareness about the CCB with policy and decision-makers. For example, using the same research methodology, the earlier pilot project funded by the CCB was influential in prompting a policy change. The definition of “family member” for successful applicants was broadened to make the program more accessible to caregivers. This current research project has engaged with the policy arena both formally and informally. Evaluation taskforce members adapted the research results for use within their own organizational capacity; many as P/EoL care advocate organizations. Their role within organizations offers opportunities to lobby for policy changes. The research results were also directly presented in two parliamentary presentations at different times in 2010 in Ottawa (Parliamentary Committee on Palliative and Compassionate Care, and a luncheon organized by the Canadian Cancer Society).


Lay Report


Issues and Recommendations

Resources (Study Outcomes)

For Employees & HR Professionals

Compassionate Care Benefit


Compassionate Care Brochure

To get these items free of charge: Order Form — Compassionate Care Benefit Information Tools for Employers, Managers, Business Owners and Human Resources Professionals

Meeting the Caregiving Needs of the Diverse Workforce: Understanding Canada's Compassionate Care Benefit (CCB) from the Perspective of Employers/Human Resources (HR) Professionals) (Presentation)


For Front-Line Providers

Peer-Reviewed Publications

Title: Canada's Compassionate Care Benefit: Is it an Adequate Public Health Response to Addressing the Issue of Caregiver Burden in End-of-Life Care?

Journal: BMC Public Health

Authors: A.W. Williams, J.A. Eby, V.A. Crooks, K. Stajduhar, M. Giesbrecht, M. Vuksan, S. R. Cohen, K. Brazil, and D. Allan

DOI: 10.1186/1471-2458-11-335

Title: Perspectives from the Frontlines: Palliative Care Providers' Expectations of Canada's Compassionate Care Benefit Programme
Journal: Health and Social Care in the Community
Authors: M. Giesbrecht, V. Crooks, and A. Williams
DOI: 10.1111/j.1365-2524.2010.00937.x

Title: Scale as an Explanatory Concept: Evaluating Canada's Compassionate Care Benefit
Journal: Area
Authors: M. Giesbrecht, V. Crooks, and A. Williams
DOI: 10.1111/j.1475-4762.2010.00941.x

Title: Spatially Informed Knowledge Translation: Informing Potential Users of Canada's Compassionate Care Benefit
Journal: Social Science & Medicine
Authors: M. Giesbrecht, V.A. Crooks, N. Schuurman, and A. Williams
DOI: 10.1016/j.socscimed.2009.05.037

Title: An Evaluation of Canada's Compassionate Care Benefit From a Family Caregiver's Perspective at End-of-Life
Journal: BMC Palliative Care
Authors: V.A. Crooks, and A. Williams
DOI: 10.1186/1472-684X-7-14

Title: Family Caregivers' Ideal Expectations of Canada's Compassionate Care Benefit
Journal: Health & Social Care in the Community
Authors: V.A. Crooks, A. Williams, K. Stajduhar, S.R. Cohen, D. Allen, and K. Brazil
DOI: 10.1111/j.1365-2524.2011.01028.x

Title: Family Friendly Policies: Accommodating End-of-Life Caregivers in Workplaces
Journal: International Journal of Workplace Health Management
Authors: M. Vuksan, A. Williams, and V.A. Crooks
DOI: 10.1108/17538351211215357

Title: The Workplace Perspective on Supporting Family Caregivers at End-of-Life: Evaluating a New Canadian Social Program
Journal: Community, Work & Family
Authors: M. Vuksan, A. Williams, and V.A. Crooks
DOI: 10.1080/13668803.2012.664891

Presentations

[List of posters and oral papers presented]


This research was funded by the Canadian Institutes of Health Research (CIHR).

CIHR (Canadian Institues of Health Research)
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