1. Developing Rural Palliative Care: A Community Intervention Study Mary Lou Kelley, MSW, PhD ICE Team Meeting Hamilton, ON May 2007

2. Background  Community capacity development model developed by Kelley during PhD (data were focus groups, 66 rural providers from across Canada)  2005 CIHR ICE grant (5 years) – funded to validate the model and to evaluate it’s use as an intervention for palliative care development  Year 1 (2006-07)-Model validation  Years 2-5 (2007-10)-PAR study using model as intervention in three communities

3. Advocacy Education Developing palliative care in Communities: A four phase model Clinical care Building external linkages Building community relationships Process of PC Development Antecedent community conditions

4. Principles of Capacity Development  Development is essentially about building on existing capacities within people, and their relationships  Development is an embedded process; it cannot be imposed or predicted  The focus is on change, and not performance  Development has no end

5.  Change is incremental in phases, however development is dynamic & non-linear  The change process takes time  Development process engages other people & social systems  Different levels and forms of capacity are interconnected in a systematic way (individuals, teams, organizations and communities) (Kaplan 1999; Lavergne & Saxby, 2001)

6. Antecedent Community Conditions Characteristics of the community & health care practice that provide a foundation for developing palliative care

7. Catalyst A catalyst for change occurs in the community, disrupting their current approach to care of dying people

8. Creating the Team Generalist providers join together to improve community care of the dying and develop “palliative care”.

9. Growing the Program The team continues to build, but now extends into the community to deliver palliative care.

10. Major themes…  Strengthening the team  Engaging the community  Sustaining palliative care

11. Challenges: Growing the program  Insufficient resources  Organization and bureaucracy in the health care system  Lack of understanding/resistance to palliative care  Nature of the rural environment

12. Keys to success…  Being community-focused  Educating providers  Working together/teamwork  Leadership (local)  Feeling pride in accomplishments

13. Essence of the developing rural palliative care model…  Rural palliative care needs a “whole community” approach: community-focused is overarching  Building rural palliative care is an “inside job”  The process is incremental, sequential (4 phases)  Antecedent conditions are the foundation  Nothing happens without a catalyst

14.  Building the local team is essential  Growing the program takes time (years!)  Imposed external interventions are NOT a major factor  Education is a critical component  Resources and policy are needed—but not until the last phase of Growing the Program

15. Phase I: Model Validation  Team was Mary Lou Kelley and Allison Williams  MPH student Jennifer Hainrich, Lakehead University  Collaborator Dr. Rob Wedel (Chinook Health Authority)  Goal was to determine if the model accurately represented the experience of a palliative care providers in rural communities, revise as needed

16. Validation method  Return to one community where data had originally been collected for member checking (Dryden, ON)  Visit six rural communities that were not part of the initial model development to determine if it fit with their experience (6 communities, Chinook Health Authority around Lethbridge, AB)  Focus groups, presented model and solicited comments.

17. Validation focus group  What were your first impressions of the model? Was there an “aha” moment for you during the presentation of the model?  To what extent does the model explain your community’s progress in developing palliative care?  Using the model, can you identify the current phase of development in your community?  Do you think the development of rural palliative care occurs in the sequence outlined (4 phases)?  What, in your experience, are minimum conditions required to begin developing palliative care?

18.  What components of the model fit most closely with your experience?  Elaborate and give examples.  Are there components of the model that are not consistent with your experience? Gaps in the model?  Elaborate and give examples.

19.  What was the role of “external” people, policies or resources in your process?  What are the keys to success for developing rural palliative care?

20. Results  Data validated the model-empirically based  Added one antecedent condtion  Previous: sufficient infrastructure, colloborative generalist practice and vision for change  Added: providers have sense of empowerment, personal control over their work (stability vs externally imposed change)  Elaborated on environmental influences to process  Incentives to develop PC were demographics, resources and isolation  Minimum population size and resources required

21.  Illustrated principles, i.e. development process is not linear (seasons like winter, spring, fall); not all branches grow at the same rate (i.e. clinical, education, advocacy etc.)  Elaborated the issues around “getting started”  In Chinook palliative care was a local initiative, then regionalized --six years ago program standardized/imposed by health authority  Role of the “consultant” (internal/external) and local leadership  Local vision for change, commitment

22. Dissemination Plan  Already verbal response to Chinook Health Authority (medical direction and palliative care manager)  Dissemination needed to:  Policy makers/health authorities  Practitioners in rural communities (eg palliative consultants)  Academic community-articles and conferences

23. Phase 2: Intervention study  Team are  Mary Lou Kelley and Allison Williams  Michael MacLean  Kyle Whitfield  Denise Cloutier-Fisher (minor role)  Graduate student (Lakehead)  Potential sites are Northwestern Ontario, Chinook Health Authority and Coastal Health Authority  Communities that have not yet development a palliative care program

24. What is PAR?  Collaboration, education, and action are the three key elements of participatory action research  The purposes are education, taking action or effecting social change  It is the process of producing new knowledge by systematic inquiry, with the collaboration of those affected by the issue being studied Ref: Green et al, 1995 in Minkler, 2000

25.  Role of the researcher in PAR is observer, facilitator, consultant  Facilitates and supports the development process, and documents the process while doing this  Requires involvement and commitment of local health care providers and organizations  Three years of community engagement for research  Process is to use model as a framework for community assessment, goal setting, development intervention plans (ongoing process) to systematically move the development process along.

26. Data collection  Researcher visits community two-three times a year  Liaises with a local collaborator by telephone between visits  Uses the principles of CD and the identified “keys to success” to guide the process of implementing the model  Will need pre and post data on palliative care services and delivery in that community (this may be hard to get or may need to be initiated)

27. Research activities  Assess antecedent community conditions  Intervention plan to remediate if needed  Engage the community in the development process  Support and facilitate team development  Support local leader  Support team to develop expertise and external linkages

28.  Support learning by doing  Support adopting clinical tools  Support getting educational resources  Support local advocacy for resources  Support development of policy and procedures  Acknowledge achievements  Etc.

29. Forms of data  Data for assessment collected via interviews, focus groups, observations, review of documents (e.g. team meeting minutes, agency policies), photographs taken by participants of their experiences, collect available statistics on palliative care provision.  Data collected from as many perspectives as possible: providers, managers, families, clients, volunteers, community members, churches etc.

30. Anticipated outcomes  Data will form a narrative of the community development experience  Data will determine the utility of the model to guide the process of development rural palliative care  Specific questions:  What are the minimum conditions in the community to develop local PC? (size, infrastructure)  How can development be externally facilitated but not imposed? (dynamic around catalyst)  How fast can the developmental process be done?

31. Spin off…..  Canadian Cancer Control Strategy survey wants to explore use of model as a framework to survey rural communities about palliative care delivery  Meeting in June in Vancouver

32. Immediate tasks:  Student needs to finish MPH project (catalyst)  Phase 1 validation needs to be written for publication  Other phase 1 dissemination (? policy makers)  Phase 2 sites need to be confirmed (number and location)  budget  ethics  Identify student for phase 2  Identify research roles (who does what)