Modeling Intra-Urban Variability of Traffic Pollution in Hamilton, Canada Sahsuvaroglu T and Jerrett M McMaster University

1
Womens Caregiving Work at End-Of-Life A Pilot
Evaluation of Canadas Compassionate Care Benefit

Allison Williams1,Valorie Crooks2, Kelli
Stadjuhar3, Robin Cohen4, Diane Allan3
1School of Geography and Earth Sciences, McMaster
University,2York Institute for Health Research,
York University, 3 School of Nursing, University
of Victoria, 4 School of Nursing, McGill
University
Research Context
Key Findings

• Informal caregivers provide 85 to 90 of all
  care1
• Informal caregivers - and women in particular -
  are assuming the majority of costs and burdens
  associated with caregiving in an increasingly
  rationalized health system2,3
• The health costs of caregiving are especially
  high for women4 and include increased morbidity5
• and mortality for bereaved caregivers6
• Informal caregiving sustains patients at the
  end-of-life7, yet the burdens associated with
• caregiving increase when patients are at this
  stage8

Gender profoundly influences the quantity and
quality of formal care provided. Findings from a
Canadian Research Institute for the Advancement
of Women (1999, p.vi) study suggest that Women
family members were expected to supplement home
care services without pay and at great personal
expense in terms of their own health, incomes,
benefits, career development and pension
accumulation, while men were not under as much
pressure to do so.9
1) Access to information Respondents who had
applied for the CCB repeatedly cited difficulty
in gaining access to reliable and accurate
information from a variety of sources. 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 thats what I did
That I could apply before going on leave was
unclear. And its kind of crazy because I work
in the system so it shouldve been clear to me,
but it wasnt somehow. 2) Application
process Respondents found the application process
difficult to negotiate and many needed assistance
completing the forms. Several noted that the
process itself was undertaken during a period
when time, energy, and other resources were
particularly taxed due to caregiving
responsibilities. Well, it the online
application form took an hour at the EI
Employment Insurance HRSDC office
officeit'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 very
not user friendly. 3) Criteria specific to
family member Many respondents believed that
the CBB currently does not consider the needs or
desires of the gravely ill individual. For
example, four of the five unsuccessful applicants
in the pilot study sample were denied access to
the CCB because they did not meet its definition
of family member. 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. 4) Challenges of
accurate prognostication Gaining access to
medical certification of the impending death was
identified as being problematic by several
respondents due to the challenges of accurate
prognostication (see Figure 1). Non-applicants
involved in caregiving for people with chronic
conditions, such as Alzheimers disease and
congestive heart failure, were particularly
troubled by this requirement. 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. 5) Length of funded
benefit period Participants believed that the
current length of the income assistance period (6
weeks) is inadequate and does not account for the
varying circumstances under which caregiving at
the palliative/end-of-life stage takes place. We
caregiver and her sister 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 of
caregiving and, that being so, would have forced
me to take up more of it. So six weeks isn't a
lot of time.
Figure 3 Uptake of the CCB by province
(Jan-March, 2004)

• WHAT IS THE COMPASSIONATE CARE BENEFIT (CCB)?
• Legislated January, 2004
• Goal enable working family members to take a
  temporary leave to care for a terminally ill
  relative
• Income Assistance up to 55 of a persons
  insured earnings (up to 413 CDN/week) for up to
  6 weeks can be used for 6 consecutive weeks, or
  1 week periods over 6 months can also be shared
  between family members
• Successful applicants must
• have worked a minimum of 600 insurable employment
  hours over the previous 52 week period
• meet the designation of family member
• have access to a medical certificate from the
  dying family members doctor indicating that
  death is imminent (i.e. within a 6 month period)
• go through a 2 week unpaid waiting period before
  starting payments and
• determine when to request that payments begin
  (must be within 28 days of starting the claim)
• Eligible family members child child of
  spouse/common-law partner (CLP) wife/husband
  CLP father/mother father/mothers
  wife/husband/CLP

Figure 1 CCB Application Form
Figure 2 Amendments of provincial labour codes
to recognize the federal CCB
Project Overview

• Pilot evaluation of the CCB conducted in summer,
  2005
• Purpose to examine the usefulness of the CCB for
  family caregivers in different types of
  palliative/end-of-life caregiving situations
  including those still working while providing
  care and those who did and did not meet
  eligibility criteria
• Informed by Pattons10 (1997, p.20) Utilization
  Focused Evaluation approach
• Utilization-Focused Evaluation begins with the
  premise that evaluations should be judged by
  their utility and actual use therefore,
  evaluators should facilitate the evaluation
  process and design any evaluation with careful
  consideration of how everything that is done,
  from beginning to end, will affect use.
• Guided by an Evaluation Taskforce representing
• Secretariat on Palliative/End-of-Life Care and
  Home and Continuing Care, Health Canada
• Families and Caregivers Policy Team, Social
  Development Canada
• Human Resources and Skill Development Canada
• Canadian Caregiver Coalition
• The Canadian Hospice Palliative Care Association
• Phone interviews conducted with 25 respondents
  using semi-structured interview guides in 3
  groups (see Tables 1 and 2)
• those who had successfully applied for the CCB
  (n4)
• those who were unsuccessful in their CCB
  applications (n5)
• those who had never applied for the CCB (n16)

Recommendations
I think it's a good thing that the federal
government does recognize that employees need
the flexibility to leave the workplace to care
for a parent because a lot of women, they just
quit their jobs to care for their parents rather
than taking leavemaybe all they really needed
was a month to get things straightened away...
So making things a little more flexible, I think
it's a very good thing. I think we're moving in
the right direction in that kind of social policy.
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
income assistance period to better meet the needs
of both the recipient(s) and gravely ill
individual
Certainly I've learned to be more open and not to
be selfish and you know I really appreciated more
what women do at home. I always knew, but until
you actually have to do it yourself. And I
figure I'm a pretty good juggler, but this is,
you know. And then you just have to decide what
your priorities are.
References 1.National Coordinating Group on
Health Care Reform and Women (2002). Women and
Home Care. Canadian Womens Health Network,
Winnipeg, MNB 2. A. M. Williams, D. Forbes, J.
Mitchell, M. Essar and B. Corbett. 2003. "The
Influence of Income on the Experience of Informal
Caregiving Policy Implications Health Care for
Women International, 24280-291. 3. Anderson,
J., Elfert, H. (1989). Managing chronic illness
in the family Women as caretakers. Journal of
Advanced Nursing, 14(9), 735-743. 4. National
Coordinating Group on Health Care Reform and
Women (2002). Women and Home Care. Canadian
Womens Health Network, Winnipeg, MNB 5. Zarik S.
Family care and burden at the end of life.
Canadian Medical Association Journal.
2004170(12)1811-1812. 6.Christakis N, Iwashyna
T. The health impact of health care on families
A matched cohort study of hospice use by
decendents and mortality outcomes in surviving,
widowed spouses. Social Science and Medicine.
200357465-475. 7. Rabow M, Hauser J, Adams J.
Supporting family caregivers at the end of life
"They don't know what they don't know". JAMA.
2004291(4)483-491. 8. Weitzner MA, B. JP,
Wagner H, Friedland J, Cox C. The Caregiver
Quality of life Index-Cancer Scale Development
and validation of an instrument to measure
quality of life of the family caregivers of
patient with cancer. Quality of Life Research.
19998(1-2)55-63. 9. Morris, M., J. Robinson, J.
Simpson, et al., (1999). The Changing Nature of
Home Care and Its Impact on Womens Vulnerability
to Poverty. Ottawa Status of Women in Canada,
The Canadian Research Institute for the
Advancement of Women. 10. Patton, M.Q. (1997).
Utilization-Focused Evaluation. 3rd Ed.
Thousand Oaks, California Sage.
For further information http//www.coag.uvic.c
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