Informal End-of-Life Care-Giving and Barriers to Rural Womens ’ Health

1. Informal End-of-Life Care-Giving and Barriers to Rural Womens’ Health Michele McIntosh RN PhD Allison Williams PhD Wendy Duggleby PhD Beverley Liepert PhD

2. Background • Care-giving makes women sick • Care-giving affects physical, emotional, spiritual health • Care-giving is influenced by and influences the social determinants of health e.g. sex, gender, income and place • The World Health Organization (1984) defines health as a resource for living, not just the absence of disease. • Women who provide informal end-of-life care at home in rural Canada lack or lose this resource • Descriptive studies document the health sequelae of care-giving • Gap in theorizing the processes involved in this erosion of health

3. Good Public Policy • What is best evidence? • RCTs have been considered gold standard • Evidence from these are not easily translated into different contexts • Complex human phenomenon require multiple methodologies to capture context, meaning as well as measurement • Ethical public policy ought be informed by best knowledge

4. Purpose: To better understand the impact of EOL care-giving on rurual women’s health • 1) To construct processes, sensitizing concepts, situational analytics and theorize about caregivers' loss of health. • 2) To identify the elements involved and the relationships among these that undermine womens’ health • 3) To utilize an innovative research design—Situational Analysis— in order to accomplish the above

5. Data Collection • Interviews with women who have provided informal end-of-life care to someone who has died though not necessarily at home • Two telephone interviews: in-depth and semi-structured • Sample size 15 • Discourse

6. Recruitment • Rural communities within Ontario RIO <60 • Rural Index of Ontario i.e. proximity to general and specialist medical referral centres and population under 10,000 • Direct recruitment and snowball recruitment from Family Health Teams and agencies e.g. CCACs

7. Situational Analysis • Situational Maps: human, non-human, discursive, and material elements in the research situation of concern and provoke analysis of relations among them • Social worlds/arenas maps lay out the collective actors and their arenas of commitment, framing meso-level interpretations of the situation • Positional maps examine the major positions taken (and not taken) in the discourse

8. Messy Map: All elements (Clarke, 2005, p. 271)

9. Ordered Map (Clarke, p. 272)

10. Social Worlds Map (Clarke, p 278)

11. Position Map (Clarke, p. 285)

12. Situational Analysis: Informal EOL Care-giving & Barriers to Health • Individual human actors • Collective human actors • Discursive Constructions • Political & Economic Elements • Nonhuman Actants • Socio-cultural/Symbolic • Spatial & Temporal Elements

13. Timeline • May 2010: Recruitment, Initial Interviews, Analysis • June—September 2010: Ongoing recruitment, Initial and Follow-up Interviews and Analysis • October 2010: Results • Policy Implications: • 1) To implement strategies to target those processes that undermine womens’ health • 2) ethical policy based on best knowledge of this complex human phenomenon

15. References • Clarke, Adele E. (2005). Situational analysis: Grounded theory after the postmodern turn. Thousand Oaks: Sage.