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

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

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

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

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

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

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

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

Ordered Map (Clarke, p. 272)

Social Worlds Map (Clarke, p 278)

Position Map (Clarke, p. 285)

Individual human actors

Collective human actors

Discursive Constructions

Political & Economic Elements

Nonhuman Actants

Socio-cultural/Symbolic

Spatial & Temporal Elements

Situational Analysis: Informal EOL Care-giving & Barriers to Health

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

References

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