1. USING THE CGPL TO EXAMINE POLICY DOCUMENTS: A RESEARCHER’S PERSPECTIVE L. Funk, Toronto Caregiver Symposium, March 15 th and 16 th, 2012

2. 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

3. Background  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

4. 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

5. 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

6. 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’ (identification problematic: what does it look like in language and action?)

8. BC Home and Community Care Practice  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

9. 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

10. 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.

11. 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)?

12. 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 direct)  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?

13. 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)?

14. 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

15. Lessons Learned I  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

16. Lessons Learned II  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?

17. Summary & Dissemination  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!