A Pilot Evaluation Of The Compassionate Care Benefit - Research Report

Pilot Evaluation of the Compassionate Care Benefit – Research Report
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A Pilot Evaluation of the Compassionate Care Benefit
Funded by the Canadian Institutes of Health Research via A New Emerging
Team in Family Caregiving in Palliative and End-of-Life Care
Research Report
RESEARCH TEAM CONTENTS PAGE
Dr. Allison Williams – Principal Investigator Executive Summary 2
Dr. Valorie Crooks – Research Assistant
Dr. Kelli Stadjuhar – Co-Investigator
Dr. Robin Cohen - Co-Investigator
Diane Allan - Co-Investigator
Introduction
The Compassionate Care Benefit – An Overview
Study Approach
Data Collection & Analysis
Respondent Identification & Recruitment
Respondent Characteristics
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EVALUATION TASKFORCE
Sharon Baxter
Canadian Hospice Palliative Care Association
Dr. Kevin Brazil
McMaster University
Linda Lysne
Canadian Caregiver Coalition
INFORMATION RESOURCES
Sandra MacLeod
Health Canada
Barbara Power-Newton
Health Canada
Dan Charette, Partrick Dessureault
Human Resources & Skills Development Canada
Julie Lachance
Health Canada
For further information, please contact:
Allison Williams, Ph.D.
McMaster University
1280 Main Street West
Hamilton, Ontario
L8S 4K1
PHONE: (905)525-9140, Ext. 24334
E-MAIL: awill@mcmaster.ca
A. KEY FINDINGS
a) Awareness of the Benefit
b) Access to Information
c) Application Process
d) Criteria Specific to ‘Family Member’
e) Challenges of Accurate Prognostication
f) Length of Benefit
B. SUGGESTED RECOMMENDATIONS
Next Steps
REFERENCES
APPENDIX A
Interview Schedule – Sample A: Successful
Applicants
APPENDIX B
Interview Schedule – Sample B: Non- Applicants
APPENDIX C
Interview Schedule – Sample C: Unsuccessful
Applicants
APPENDIX D
Table 2: Demographic Overview by Province
TABLES
Table 1: Demographic Overview by
Respondent Group
© Fall 2005
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EXECUTIVE SUMMARY
The Compassionate Care Benefit (CCB) legislation came into effect in January
4th
, 2004 due to changes in the Employment Insurance Act and Canadian Labour Code.
Its purpose is to provide a 6-week paid leave from work in order to provide
compassionate care for a family member who is determined to be at risk of death. Its
establishment was based on recommendations from the Kirby and Romanow reports
(both released in 2002) and the 2002 Speech from the Throne, as well as years of
encouragement from those in the palliative care and caregiving communities. A New
Emerging Team (NET) in Family Caregiving in Palliative/End-of-life care, funded by the
Canadian Institutes of Health Research, proposed to carry out an evaluation of the CCB
from a family caregiver’s perspective. Funded by this team’s seed money, the first of a
two-part formative evaluation of the CCB, defined as the pilot project phase (Part 1), is
the topic of this report. The pilot evaluation was conducted in order to test the research
approach, feasibility of sample recruitment, research instruments, and all other aspects of
the research endeavour. Given the pilot nature of this evaluation, coupled with the small
sample size (n=25), the findings should be viewed as limited in scope and preliminary.
The results of the pilot phase have provided the preliminary data needed to secure
external funding for a more extensive examination of the needs of family caregivers (Part
2), while provided insight for government policymakers, specifically as it relates to
family caregivers and especially long-term caregivers.
Using a utilization-focused evaluation approach, facilitated by an evaluation
taskforce, the pilot evaluation of the CCB was undertaken from the fall of 2004 through
to the fall of 2005. Respondents’ perceptions of the Benefit were captured via telephone
interviews (n=25). Three categories of respondents were sampled across the country:
non-applicants (n=16), successful applicants (n=4) and those who applied but were
denied (n=5). Successful applicants were not long-term caregivers and used the Benefit
for both arranging and providing hands-on and emotional care specifically at end-of-life.
This suggests that the Benefit is not meeting the needs of long-term caregivers, but rather
permits family members to provide urgent, end-of-life compassionate care. As
determined using thematic analysis, a number of key findings emerged, which have been
translated into recommendations. The preliminary suggested recommendations that
emerge from the key findings are as follows:
1. Implement a marketing campaign about the CCB, targeting the general public and
health care providers, who could give the information to families
2. Simplify the application process
3. Expand the definition of ‘family member’ to be more inclusive
4. Given the challenges of accurate prognostication, reconsider the requirement that
the care recipient be within six months of death
5. Extend the length of the Benefit period to better meet the needs of both the
recipient(s) and gravely ill individual

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Introduction
A growing body of research confirms that families are assuming the majority of
costs and responsibilities associated with caregiving due to an increasingly rationalized
health systemi
. The responsibilities associated with caregiving are often more
considerable than what family caregivers can manage, resulting in compromised
emotional, mental, social, financial and physical well-beingii iii iv v
. Although many
family caregivers want to provide care for their family members at the end-of-life, work
interference can result in significant stress and burden for family caregivers and many are
often faced with no paid leave or job security when they return to workvi
. In its 1999
Report, Caring about Caregiving, the Conference Board of Canada (1999) reports that
48% of family caregivers found it difficult to balance caregiving and job responsibilities
and 42% experienced a great deal of stress in trying to do sovii
. A New Emerging Team
(NET) in Family Caregiving in Palliative/End-of-life Care, funded by the Canadian
Institutes for Health Research, proposed to carry out an evaluation of the Compassionate
Care Benefit (CCB) from a family caregiver’s perspective. Funded by this team’s seed
money, the first of a two-part formative evaluation of the Compassionate Care Benefit
(CCB), defined as the pilot project phase (Part 1), is the topic of this report. The purpose
of the pilot evaluation was to test the research approach, feasibility of sample
recruitment, research instruments, and all other aspects of the research endeavour, in
preparation for a larger evaluation of the CCB (Part 2). Given the pilot nature of this
evaluation, coupled with the small sample size (n=25), the findings should be viewed as
limited in scope and preliminary.
The Compassionate Care Benefit – An Overview
The CCB legislation came into effect in January 4th
, 2004 due to changes in the
Employment Insurance Act and Canadian Labour Code. Its establishment was based on
recommendations from the Kirby and Romanow reports (both released in 2002) and the
2002 Speech from the Throne, as well as years of encouragement from those in the
palliative care and caregiving communities. The CCB is administered through the federal
Employment Insurance (EI) program as a special benefit which recognizes that caring for
a gravely ill person has implications for both economic and job security. Successful
applicants can receive up to 55% of their average insured earnings over a six week period
to provide care for a family member who is determined to be at risk of death within a six
month (26 week) period. The definition of a family member at the time of data collection
for this pilot evaluation included those who were caring for one of the following family
members1
:
• child or the child of your spouse or common-law partner (a person who has been
living in a conjugal relationship with that person for at least a year);
• wife/husband or common-law partner;
• father/mother;
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Source: http://www.hrsdc.gc.ca/asp/gateway.asp?hr=en/ei/types/compassionate_care.shtml&hs=tyt#family,
http://www.hrsdc.gc.ca/asp/gateway.asp?hr=en/ei/types/compassionate_care.shtml&hs=tyt#family

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• father’s wife/mother’s husband; or
• common-law partner of your father/mother.
The six weeks of income assistance can be taken at once, broken down into one
week periods and spread out over six months, and/or shared between two or more family
members. Applicants must have a minimum of 600 hours of insurable employment over
a 52 week period in order to qualify for the Benefit2
in addition to meeting the Benefit’s
designation of ‘family member’ and having access to a medical certificate from the
gravely ill or dying family member’s doctor indicating that death is indeed imminent (i.e.
within a six month period). Successful applicants must first go through a two week
unpaid waiting period before starting the Benefit (if the CCB is shared only the first
recipient needs to take the unpaid waiting period). The successful applicant must
determine on his or her own when to request that the payments begin - and the first
payment is made within 28 days of beginning the claim.
Despite the amendment to the Canadian Labour Code and the passing of the CCB
legislation, each province/territory must individually choose whether or not to recognize
the Benefit (by implementing job protection legislation). As of spring 2005, Alberta,
British Columbia, Newfoundland & Labrador, and the Northwest Territories had not
amended their labour codes; this does not prohibit residents from these provinces from
successfully applying.
Study Approach
Patton’s (1996) comprehensive utilization-focused approach to evaluation is
employed in this evaluation projectviii
. The objective of this type of evaluation is to
inform program improvement, with the research results being utilized to meet this
objective. This approach requires the identification and organization of relevant decision
makers and information users, who become part of an ‘evaluation taskforce’ (ETF) and
work with the project team (made up of academics from McMaster University,
University of Victoria, and McGill University) throughout the evaluation. Because
decision makers and information users are the ones who most often translate data into
decisions, their active participation in the design, interpretation and dissemination of data
is crucial in order to have policy and program impact. The ETF is made up a number of
individuals representing various organizations, many who have operated as information
resources; they include:
• Human Resources and Skills Development Canada (HRSDC)
• Secretariat on Palliative and End-of-Life Care, Health Canada
• Home & Continuing Care, Health Canada
• Families & Caregivers Policy Team, Social Development Canada
• Canadian Caregiver Coalition
• Canadian Hospice Palliative Care Association
• Key individuals involved in the early developments of the CCB
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The only group of employees that does not need to meet the employment criterion is self-employed fishers in that they
must earn $3,760 in fishing income before being eligible for the CCB.

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Communication with members of the ETF began in the fall of 2004 and has
continued since. Communication has taken place via teleconferences, between which
regular participation in e-mail correspondence has been maintained. In addition to
assisting with the determination of relevant evaluation questions for the semi-structured
interview schedule, members offered suggestions specific to the sampling strategy and
recruitment strategy. The ETF continues to work to determine processes specific to
policy intervention/impact.
Data Collection & Analysis
Semi-structured audio-taped telephone interviews averaging 30 minutes were
conducted with three respondent groups: non-applicants (n=16), successful applicants
(n=4) and those who were denied the Benefit (n=5). Data were collected over a three
month period spanning the summer of 2005. The questions asked included those specific
to the administration of the Benefit (i.e. application process), employee/employer
interactions with regard to negotiating leaves, and respondents’ experiences as caregivers.
The question guides can be viewed in Appendices A, B, and C. All the interviews were
transcribed verbatim. Each of the three respondent groups was analyzed separately using
thematic analysis. Comparisons were then made across the three respondent groups.
Respondent Identification & Recruitment
As described below, a multi-pronged recruitment strategy was implemented in
order to have interested respondents call a toll-free number, where a bilingual telephone
message requested that respondents leave their contact information via voicemail. The
interviewer then called back confirming an interview time convenient to the respondent.
The interview began with obtaining informed consent.
The initial recruitment strategy consisted of ETF members disseminating English
and French versions of the project advertisement to members of their respective networks
via e-mail and newsletters. A project advertisement was also placed in The Family
Caregiver Newsmagazine and on the Family Caregiving in Palliative & End-of-Life Care
NET website3
. Following this, organizations and support groups across Canada were
identified through strategic internet searches and were sent project advertisements via e-
mail. More specifically, organizations and groups related to palliative care, bereavement,
hospice care, and labour management were sought out and contacted. Given the minimal
response produced from the strategies above, an advertisement was placed in the
classified section of both the Toronto Star and Toronto Sun for a two-week period.
Throughout this entire period respondents were also asked to share project information
with others they knew who may have been interested in participating. Each of these
strategies was undertaken simultaneously with the other strategies in order to best
identify potential respondents in a timely, efficient, and effective manner. Finally,
information letters, together with a project advertisement, were sent to MPs and MPPs
across the country. This last recruitment strategy was what allowed us to meet our
minimal numbers, which were small given the pilot nature of the evaluation.
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http://www.coag.uvic.ca/eolcare

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Respondent Characteristics
Respondents resided across Canada, with most being from Ontario. We accessed
respondents of a wide variety of backgrounds. With respect to gender, 20 respondents
were female and five were male. The familial relationship of the respondent to the
gravely ill family member varied, with seven being siblings, 16 being children, one being
a grandchild, and one being a partner. The mean average age of the respondents was 46
(median 51) and was 71 (median 79) for the care recipients. The mean average length of
the caregiving period was 5.6 years (median 4 years). An overview of the demographic
profiles of both the respondents and the care recipients is provided in Table 1. The data
presented in Table 1 are also presented by province in Appendix D.
Table 1: Demographic Overview by Respondent Group
Successful
Applicants
Denied
Applicants
Non-
Applicants
Total
# respondents 4 5 16 25
Gender Breakdown
Female respondents 3 3 14 20
Male respondents 1 2 2 5
Female care recipients 11 4 2 17*
Male care recipients 7 1 2 10*
Familial Relationship of Respondents
Siblings 0 4 3 7
Partners 0 0 1 1
Child for parent 4 1 11 16
Grandchild for grandparent 0 0 1 1
Length of Caregiving Period
Less than 2 months 2 0 1 3
1-2 years 1 2 1 4
3-5 years 0 2 2 4
5 years + 0 0 4 4
10 years + 0 0 5 5
20 years + 0 0 1 1
Care Recipient’s Diagnosis
Cancer 4 4 4 12*
Alzheimer’s disease 0 1 7 8*
Parkinson’s disease 0 0 2 2*
Stroke 0 0 2 2*
Other 0 0 3 3*
* NOTE: Two respondents reported providing care for both parents which is why the recipient total above does not equal 25.

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A. KEY FINDINGS
The key findings that follow provide only a snapshot of people’s experiences of
the CCB, given the small size of the sample, especially of those who were successful
applicants (n=4) and those whose application was denied (n=5). Successful applicants
were not long-term caregivers and used the Benefit for both arranging and providing
hands-on and emotional care specifically at end-of-life. This suggests that the Benefit is
not meeting the needs of long-term caregivers, but rather permits family members to
provide urgent, end-of-life compassionate care. The non-applicants group was designed
to comprise individuals who were candidates for the CCB (i.e. met the eligibility
requirements). We were not able to recruit people who fit this criterion. Consequently,
this non-applicant group were made up of respondents who did not meet the prerequisites
for application to the CCB, such as being outside the criteria of ‘family member’ or
outside the minimum qualifications with respect to insurable employment (retired, self-
employed, unemployed, etc.).
The respondents generally viewed the CCB as a step in the right direction of
better supporting families. When asked about how the government could better support
family caregivers, one non-applicant replied by saying: “I hope that it's [the CCB]
implemented…and that it will stay implemented.” Many other respondents interviewed
expressed support for the program. Another non-applicant responded to this question by
recounting her thoughts after first learning of the CCB’s existence: “I just thought ‘oh,
it's [the CCB] a good idea, but it's not working for me.’” These comments are
illustrative of the fact that even those who had never applied for the Benefit or who were
ineligible viewed it as a positive initiative. Despite this, the respondents were able to
identify several challenges. In the overview of the findings that follows, we focus
specifically on respondents’ understanding of the Benefit, application process, and the
suggested improvements shared during the interviews.
a) Awareness of the Benefit
Respondents were generally aware of the existence of the CCB but struggled with
the details of the Benefit, specifically in relation to the application process. The
respondents’ knowledge of the CCB prior to the interview was diverse. It was not
surprising that those who had the most limited knowledge of the Benefit were in the non-
applicant group. They were most likely to ask questions about the logistics of the Benefit
during the interview and to express having an incomplete understanding of the CCB in
general. Of the 25 interviewed, a total of 20 were aware of the Benefit prior to
participating in this pilot evaluation. These respondents first learned of the CCB from a
variety of sources: two from community/support groups; seven from newspapers; one
from a social worker; two from the radio; three from television newscasts; four through
their employment positions (in that they were employed in jobs that necessitated
familiarity of the Benefit); and the remaining one through a health care professional.
Several respondents commented on the fact that advertising of the Benefit was limited,
leading some to speculate that this could potentially lead to misinformation. For
example, a successful applicant stated:

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Advertisement, I think there needs to be more. I think it was very gung-ho there
[when the CCB was first announced] and I haven’t seen any of it since. And,
actually, I had heard that they had cancelled [it]… Somebody just mentioned it;
maybe it was just hearsay.
This respondent then went on to suggest that better marketing or advertising of the CCB
would be one way to improve the Benefit, and that doing so would reach more potential
applicants or those who may need to provide care in the future. Despite calls for more
advertising, it was found that a large majority of the respondents had been aware of the
Benefit’s existence prior to participating in the study. Some people had not heard about
the Benefit prior to participating in this study.
b) Access to Information
Being aware of the CCB’s existence and having a working understanding of how
the Benefit is administered are two separate issues. The respondents who had applied for
the Benefit, whether successful or not, repeatedly cited difficulty in gaining access to
reliable and accurate information from a variety of sources, including the internet and
government offices. One CCB recipient who had applied to provide care for a parent
recounted her difficulty with accessing accurate information about the application
process:
I understood that I had to leave my job, and after leaving my job serve a two week
waiting period and then apply for it, so that’s what I did… [That I could apply
before going on leave] was unclear. And it’s kind of crazy because I work in the
system so it should’ve been clear to me, but it wasn’t somehow.
When another successful applicant who had provided care for a parent was asked about
her experience of receiving CCB income support, she stated:
They said once you wait the two week period and then you're plugged into the
system then you…can get paid [in] up to 28 days. Like you get your first payment
within 28 days, well… But nobody really tells you when that is.
Other successful applicants also discussed having difficulty understanding when their
payments would start or stop, citing that the information about the Benefit available to
recipients is lacking such details. As another successful applicant pointed out, talking to
government staff did not always yield accurate information either:
They weren't really that clear about things themselves. That certainly made it
that much [more] difficult for us.
An unsuccessful applicant said he found that government staff “weren’t organized”
when speaking in-person about the application process and his own eligibility for the
Benefit. Having access to reliable, accurate, and up-to-date information and to
knowledgeable government staff were important components to understanding the CCB.

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c) Application Process
A total of nine respondents had completed the CCB application process. Their
comments revealed this process to be a difficult one to negotiate for many reasons. One
such reason was that communication with government staff was found to be challenging
by many. A successful applicant recounted the following:
Well, it was like…I got three letters in the span of four days telling me three
different things, so that part was really confusing.
Others respondents shared similar experiences. Another successful applicant
characterized the application process as “quite complicated” and said that being able to
access assistance from government staff was important. The need for assistance during
the application process was echoed by others:
Well, it [the online application form] took an hour at the EI office…it's a good
thing there was this lady standing behind me telling me, like helping me do almost
every step of it, because it was not very user friendly.
I was very fortunate. I went into the unemployment office and they said “well you
can do it online on the computer” and I said “no, I would rather speak with an
individual.” And I think that's where to go because you're already emotionally
stressed. I'm not that great with computers so they were very helpful.
These comments point to the fact that many respondents needed assistance completing
the application forms. To this end, the online forms were discussed as being difficult to
navigate and a preference for one-on-one assistance was cited by several of the
applicants. Despite receiving such assistance from government staff, an unsuccessful
applicant reported experiencing a “scramble with the paperwork.” A difficult element of
the application process touched on by several respondents was that the process itself had
been undertaken during a period when time, energy, and other resources were particularly
taxed. An unsuccessful applicant who was providing care for her sister had this to say:
I was really coping with a lot of stuff at the time and really, to be very honest,
whether I got on employment insurance [CCB] or not was not my priority right at
that moment. But I kind of filed it [the thought of applying] away and later
looked into it. I did, and then I thought “No, I can't deal with it… This is very
stupid, this is absurd but I can't deal with it right now.” So I didn't for a little
while; but then, amazingly, within a couple of weeks my sister…started improving
a bit, like she didn't die! So you know, as the weeks went by I thought: I better
look into this a bit further, so that's when I did.
Another difficulty associated with the application process was the time it took to gather
the supporting documentation (e.g. medical certificate). Respondents reported having to
take time off work during this already busy period in order to gather the necessary
paperwork, leading one unsuccessful applicant to describe the process as being “time
consuming.”

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In many cases, respondents were the first to request the Benefit in their places of
work. Most respondents noted that they were in the position of educating their employers
about the CCB and felt that employers were very supportive of their request.
d) Criteria Specific to ‘Family Member’
The most common suggestion for improvement was to broaden the Benefit’s
eligibility criteria so that close relatives who are not currently eligible (including siblings
and grandchildren) can receive the CCB. An unsuccessful applicant who provided care
for his brother said the following about this particular eligibility criterion:
From a policy point of view, I honestly believe that the government is aware of the
potential pit-falls in this legislation, and the obvious one being the definition of
‘family.’
A non-applicant who was caregiving for her brother at the time of the interview
recounted her disappointment in learning that she would not be eligible:
…my brother’s still moving around, he’s still doing well. I just wish I had
comfort to know that I could apply for it [when he’s no longer doing well]. But I
know I can’t.
A common concern was that those who did not have a family member who met the
eligibility criteria would be excluded from applying for the Benefit. An unsuccessful
applicant who traveled out of province to provide care for her sister said this:
…there's certainly not enough description to say who is or who is not a family
member. Like I said, I saw those four categories [of eligible family member on
the application form], picked the ‘other’ [category]… Once getting the declined
letter back saying that I wasn't eligible, I really started to think more about it. If
it were me that were sick and required homecare, there'd be a whole other issue:
I'm not married, I have no parents, and I have no children. This is what got me
on my high horse about that - is that this legislation is discriminatory. There is a
whole bunch of Canadians which are not going to be able to apply or be eligible
for it. In addition to having to care for my sister in a difficult time, I'm being
presented with the fact that the government doesn't think we're family.
This suggested improvement was made by seven of the respondents, including four of the
five denied applicants. Each of these four applicants was denied the CCB on the basis
that they did not meet the definition of ‘family’ as set out by the Benefit. These
respondents had appealed the decision, three of whom were undertaking court challenges
to appeal the legislation at the time of the interview.
One recommendation that falls in line with the above suggested improvement and
was mentioned by four respondents is to ‘give voice’ to the person who is gravely ill.
These respondents were particularly concerned about the fact that the person who is in
the process of dying has no say with regard to selecting the caregiver who will receive the
CCB. Two denied applicants had this to say:

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Well, I think that the person who is dying, the person who is in need, should be the
person who can decide who cares for them. I don’t think it necessarily has to be a
blood relation.
Die with dignity, die with grace. And more importantly, or equally important, is I
think it needs to say that people should have the right to chose who their
caregiver is.
An applicant pointed out during his interview that while “the legislation is really
triggered by the person that is dying,” that same person is not involved in the decision-
making process with regard to identifying a caregiver. This respondent, along with three
others, believed that the way in which the Benefit is currently administered provides no
consideration of the needs or desires of the gravely ill individual, to his or her own
detriment. Thus, in order to provide compassion toward this person, the gravely ill
individual should be involved in decision-making about the caregiver (if he or she has the
capacity to do so).
e) Challenges of Accurate Prognostication
Another suggested improvement made by seven respondents was to reconsider the
requirement that the care recipient be within six months of death, as determined by a
physician. This was identified as being problematic by several respondents due to the
challenges of accurate prognostication. Non-applicants involved in caregiving for people
with chronic conditions, such as Alzheimer’s and congestive heart failure, were
particularly troubled by this requirement:
I could go home after work and she could be dead. But, you know, for me to think
that I might get a doctor certificate or something that says she's going to be dead
- I think it was twenty-six weeks - that would never happen right now. And so you
know, I can't really see how much good that that's going to be unless you had
something very distinct and very real [acute/short-term] and then I would suggest
then in that situation, the person's got more important things to think about than
trying to go to a doctor and get a certificate saying that I'm applying for
unemployment insurance.
Because, how do you know? I mean, she could have a heart attack tomorrow and
be gone too. But like I said, she could live another three to four years. But the
way the doctors are talking, she's in the last stage and having some neurological
thing with her vision and things like that. How do you know when [a person is
within six months of death], I guess is my question.
The other dimension of deciding when to start receiving the CCB payments
during this six month period was also viewed as being problematic. Respondents
indicated that there was not enough support or guidance available to applicants in order to
make an informed decision. One outcome of this is that successful applicants may not

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receive the entire six weeks if they decide to start the leave too late. A successful
applicant described this situation as being the “only glitch” associated with the Benefit.
f) Length of Benefit
Extending the length of the Benefit period was a suggested improvement by six
respondents. These respondents, a mix of successful and unsuccessful applicants along
with non-applicants, believed that the current length of the income assistance period is
inadequate and does not account for the varying circumstances under which caregiving
takes place. A non-applicant stated that “some people are palliative for months.” Given
this, six weeks of benefits within an eight week leave of absence from work (this
accounts for the two week waiting period) may not come close to meeting a care
recipient’s needs. A successful applicant living in Ontario who split the Benefit with her
sister to provide care for a parent living out of the country said this about their situation:
We were very concerned about what we were going to do when the six weeks ran
out. I could have lost, I guess, a couple of weeks of income. I would've been
better able to stand that than my sister for example. That would've really
prevented her with being able to continue with the rotation and, that being so,
would have forced me to take up more of it. So six weeks isn't a lot of time. And
you can say: well it's over a six month period. And the good thing about it is that
you can take it in chunks; I guess like if you need two weeks in the beginning and
then you don't need anything for awhile, as I understood it, you don't have to take
the six weeks consecutively. So that's a good thing, but it's not a lot of time when
somebody's dying. I mean, it could've put us in the position of being glad it
[death] went so fast, which is kind of awful.
Despite appreciating certain elements of flexibility built into the Benefit, this successful
applicant’s experience is telling in terms of considering whether six weeks is an adequate
length of time, particularly for someone who must travel a significant distance to provide
care. Others echoed her comment, including another successful applicant who stated that
“six weeks is a joke, it has to be at least twelve weeks.”

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B. SUGGESTED RECOMMENDATIONS
Respondents recognized a number of challenges with the CCB, which feed into
the following suggested recommendations. Given the limitations of this pilot evaluation,
as discussed earlier, these suggested recommendations are limited in scope and
preliminary.
1. Implement a marketing campaign about the CCB, targeting the general public and
health care providers, who could give the information to families
2. Simplify the application process
3. Expand the definition of ‘family member’ to be more inclusive
4. Given the challenges of accurate prognostication, reconsider the requirement that
the care recipient be within six months of death
5. Extend the length of the Benefit period to better meet the needs of both the
recipient(s) and gravely ill individual
The Federal government has initiated the process to make regulatory changes to the CCB,
where the gravely ill person will be able to designate who is eligible to receive the
Benefit. This will imminently expand the definition of family member to include
siblings, grandparents, aunts, nieces, uncles, grandchildren, nephews, in-laws, foster
parents, wards and others considered to be family by the gravely ill person, or their
representative4
.
Next Steps
The findings of the pilot evaluation have provided the research team with a first
look at the CCB from a family caregivers’ perspective, while providing the testing
ground for the utilization-focused approach to evaluation, the research instruments,
sample design, recruitment plan and all other aspects of the research endeavour. In this
regard, it will inform the larger evaluation of the Benefit (Part 2) that is planned for
implementation in defined provincial jurisdictions to determine, in more detail, the family
caregiver’s perspective of the CCB. Further, this preliminary work has provided insight
for government policymakers, specifically as it relates to family caregivers and especially
long-term caregivers.
4
English: http://news.gc.ca/cfmx/view/en/index.jsp?articleid=186529&
French: http://news.gc.ca/cfmx/view/fr/index.jsp?articleid=186529&

14
APPENDIX A
Interview Schedule – Sample A: Successful Applicants
Administration of the Program:
1. How did you hear about the CCB? (Probe: place of employment, news media,
community resource/health care personnel/facility)
2. Were you the primary family caregiver? Did you share the CCB with another
caregiver? If so, how was the time of the CCB divided?
3. What prompted you to apply to the CCB (Probe: care recipient, health care
professional, yourself)?
4. How did you determine when to take the CCB?
5. How long did it take for your application to be processed?
6. How would you describe the process of applying for the CCB?
Experience of the Program:
7. How would you describe your experience as a recipient of the CCB?
a. As a caregiver providing physical care?
b. As a family member providing emotional support?
8. Did you have travel out of the region to provide care? If so, what were your
departure and destination points?
Employee/Employer Experience:
9. How did your workplace react to you taking the CCB (Probe: employer,
colleagues/co-workers)?
10. Did any form of negotiation take place in determining when you took the CCB?
Were you, the caregiver, satisfied with the outcome?
11. How did your workplace respond to your return? Were there any consequences as
a result of taking the CCB?
12. In what ways could the CCB be improved?
13. Is there anything else you would like to share about the CCB that we haven’t
asked you about?

15
APPENDIX B
Interview Schedule – Sample B: Non- Applicants
• Tell me a little about your experience as a family caregiver.
• What options, if any, did you have when transitioning from your job to being a
caregiver? (take/negotiate unpaid leave, quit job, change hours of work)
• What do you know about the CCB if anything at all?
Knowledge of CCB
• Please give a brief synopsis of your
understanding of the program.
• How did you first hear about the
CCB? (employer, media,
community resource, health care
professional).
• Given your knowledge of the
Benefit, why did you choose not to
apply? What were the factors that
influenced this decision?
• Do you believe you meet the
programme’s eligibility
requirements? Why?
• Based on your knowledge of the
CCB, how could it be improved to
better-support family caregivers?
• How can the government better-
support family caregivers?
• Given what you’ve shared with me
already, is there anything else you’d
like to add regarding your
experience of family caregiving, the
CCB, or the supports available to
caregivers?
No Knowledge of CCB
• To your knowledge, what types of
government or community supports
are available to assist with the
provision of family caregivng?
• What supports, if any, have you
used in your role as a caregiver?
• Are there any supports you have
specifically chosen not to apply for
or pursue? Why? What are the
factors that have influenced this
decision?
• Government programs, particularly
those that provide income
assistance, are most often guided by
strict eligibility requirements.
Given your personal circumstances
(financial, workforce participation),
is there any reason you would be
concerned about your eligibility for
such support?
• How can the government better-
support family caregivers?
• Given what you’ve shared with me
already, is there anything else you’d
like to add regarding your
experience of family caregiving or
the supports available to caregivers?

16
APPENDIX C
Interview Schedule – Sample C: Unsuccessful Applicants
Administration of the Program:
1. How did you hear about the CCB? (Probe: place of employment, news media,
community resource/health care personnel/facility)
2. How long after your application did you wait to hear of the outcome?
3. How would you describe the process of applying for the CCB?
4. Were you given a reason for why your application for the CCB was unsuccessful?
5. What did you do instead?
6. What options did you have to choose from? (Probe: take/negotiate an unpaid
leave, quit job, change work hours, etc.)
7. In what ways could the CCB be improved?
8. Is there anything else you would like to share about the CCB that we haven’t
asked you about?

17
APPENDIX D
AB BC MB NFLD NS ON QC SK Total
# respondents 4 3 1 3 1 8 3 2 25
Gender Breakdown
Female respondents 4 3 0 3 1 6 1 2 20
Male respondents 0 0 1 0 0 3 1 0 5
Female care recipients 1 1 0 1 1 7 3 2 17*
Male care recipients 3 2 1 2 1 2 0 0 10*
Familial Relationship of
Respondents
Siblings 0 2 1 1 0 3 0 0 7
Partners 1 0 0 0 0 0 0 0 1
Child for parent 3 0 0 2 1 5 3 2 16
Grandchild for grandparent 0 1 0 0 0 0 0 0 1
Length of Caregiving Period
Less than 1 yr 2 0 1 1 0 2 0 0 6
1-2 years 0 1 0 0 0 3 0 0 4
3-4 years 0 0 0 0 1 2 2 0 5
5 years + 1 0 0 1 0 0 1 1 4
10 years + 1 1 0 1 0 1 0 1 5
20 years + 0 1 0 0 0 0 0 0 1
Care Recipient’s Diagnosis
Cancer 2 2 1 1 0 6 0 0 12*
Alzheimer’s disease 2 0 0 1 0 1 2 2 8*
Parkinson’s disease 0 0 0 0 1 1 0 0 2*
Stroke 0 0 0 1 1 0 0 0 2*
Other 0 1 0 0 0 1 1 0 3*
CCB Status
Successful applicants 1 0 0 0 0 3 0 0 4
Denied applicants 0 1 1 0 0 2 1 0 5
Non-applicants 3 2 0 3 1 3 2 2 16
NOTE: Two respondents reported providing care for both parents which is why the recipient total above does not equal 25.

18
References:
i
Williams, A.M. (2004). Shaping the practice of home care: critical case studies of the
significance of the meaning of home. International Journal of Palliative Nursing, 10(7),
333-342.
ii
Stajduhar, K.I., & Davies, B. (1998). Death at home: Challenges for families and
directions for the future. Journal of Palliative Care, 14(3), 8-14.
iii
Cameron, J.I., Franche, R.L., Cheung, A.M., & Stewart, D.E. (2002). Lifestyle
interference and emotional distress in family caregivers of advanced cancer patients.
Cancer, 94(2), 521-527.
iv
Chentsova-Dutton, Y., Shucter, S., Hutchin, S., Strause, L., Burns, K., Dunn, L., Miller,
M., & Zisook, S. (2002). Depression and grief reactions in hospice caregivers: from pre-
death to 1 year afterwards. Journal of Affective Disorders, 69(1-3), 53-60.
v
Emanuel, E.J., Fairclough, D.L., Slutsman, J., & Emanuel, L.L. (2000). Understanding
economic and other burdens of terminal illness: The experience of patients and their
caregivers. Annals of Internal Medicine, 32(6), 451-459.
vi
Stajduhar, K.I., Chappell, N.L., & Reid, R.C. (in preparation for submission). The
impact of work interferences on family caregiver stress and burden. Canadian Journal on
Aging.
vii
Conference Board of Canada. (1999). Caring about caregiving: The eldercare
responsibilities of Canadian workers and the impact on employers. Available [on-line]:
www.conferenceboard.ca
viii
Patton, Michael Q. (1997) Utilization-Focused Evaluation (3rd
Edition). Sage:
Thousand Oaks,CA.
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