USING THE CGPL TO EXAMINE
POLICY DOCUMENTS: A
RESEARCHER’S PERSPECTIVE
L. Funk, Toronto Caregiver Symposium, March 15th
and 16th, 2012
Introduction
Increasing demands on health care budgets;
emphasis on home death
 How are family caregivers roles and needs
viewed in policies and practice? What are the
implications of policies for family caregivers?
 Comparative analysis can help understand
variations in policies relevant to the provision
and experience of family caregivers
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Background
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Collaboration between international researchers
Examine and compare policies in Canada, the UK
and Australia relevant to family caregiving for
those near/at EOL
National-level policy documents and statements
produced by govt and national orgs; existing
research.
In-depth discourse analysis of 3 national EOL care
strategy documents
Process
Target audience: researchers, others
 The CGPL is framework for considering
how existing policies may affect FCGs
 Primarily designed for policy analysts
and program planners/managers
 Revised CGPL for discourse
analysis/research use (Marian)
 Used flexibly as general guide or tool for
enhancing the analysis
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Policy Analysis
Some DIRECTLY affect FCGs: direct services;
direct and indirect financial compensation;
labour and equity/discrimination policies
 Other policies INDIRECTLY affect FCGs: esp.
health & social care services
 Specialist palliative care services affect FCGs
both directly; and indirectly
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Framing, Values and Principles
How are caregivers perceived, valued
and defined?
 What explicit and implicit values are
expressed about caregivers and their role
and responsibility vis a vis the health and
social service systems?
 Overlaps with ‘respect & dignity’
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(identification problematic: what does it look
like in language and action?)
BC Home and Community Care Practice
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Assessments and decisions about the amount of
home support are based in part on client clinical
symptoms/wellbeing and in part on available
family supports.
If two clients have same assessed clinical need but
different family support networks, the more
networked client will receive lower levels of formal
services in the home.
Views families primarily as resources for the client
and substituting for formal services
UK Home and Community Care Practice
1995 Carers Act: FCG needs be assessed
by community care case managers and
taken into account in client care planning
 Subsequent revisions (2000, 2004):
providers must FCGs about rights to a
needs assessment
 Must consider outside interests and
pursuits (e.g. employment, education) in
assessment
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Quebec’s EOL/Palliative Care Policy
As clients first
...service providers must see families first as clients who
need support and guidance at a difficult time
As people who can also play a role in care
... The participation of families in caregiving must remain
voluntary and take into account their abilities. If
families agree to get involved, certain criteria must be
met to enable them to carry out their duties to the
fullest.
Choice, Self-Determination, and
Independence
Is there any mention of a family member’s
choice and right to decline, limit or end a
caregiving role (CGPL)?
 How are constructs of choice and
independence used – in relation to caregivers
or only to clients?
 Are caregivers constructed as having rights
(e.g. To receive direct services/have needs
assessed)?
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Needs and Supports
Are CG needs distinguished from client needs?
 How will CG needs be identified and addressed?
 What types of supports and actions are defined
as necessary to support CGs? (Types; indirect and
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direct)
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Described as supporting CGs to: a) protect their
own health/well-being; b) continue to provide
care; or c) as a human right or to promote
equity/equality?
Implementation
What mechanisms are evident to promote
implementation?
 Are outcome measures built in? Is there
legislation behind it? Is there funding?
 Who is identified as responsible for
implementing the strategies?
 Are there contradictions between the stated
policy and current models of practice or other
policies (barrier to implementation)?
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Gaps and Consequences
Unintended effects on FCG burden and
future wellbeing
 Unintended effects on relationship
between FCG and client (= need to
acknowledge & respect relationship)
 Distributional equity/diversity: Impacts
of policies may differ for differing
population groups of FCGs
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Lessons Learned I
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CGPL helped me focus on overwhelming project
Consider intersections between policies: HCC
policies/culture may conflict with EOL
policies/culture and CG rights-based policy
How to analyze apparent contradictions within
policy documents?
Difficulties re: “respect and dignity” (too much
interpretation involved?)
Systematic, rigid use versus flexible guiding tool
Lessons Learned II
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Challenge for researchers analyzing policy: often
lack ‘insider knowledge’ (e.g. How stakeholders
were involved)
Need to focus simultaneously on context, language
and action
Would CGPL benefit from greater attention to the
political, economic, cultural, demographic,
organizational contexts of policy development and
implementation? How would this help our
understanding?
Summary & Dissemination
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Sharing experiences with the CGPL for policy
analysis (article and future work with Marian)
Potential future revision of CGPL for such purpose
More broadly, my involvement with the CGPL has
facilitated my own connections with Manitoban
policy-makers and caregiver organizations
Ideas for future research!