Developing Palliative Care in Rural Communities

1. Developing Palliative Care in Rural Communities Mary Lou Kelley, MSW, PhD Allison Williams, PhD Edmonton May 20, 2010

2. What interventions can enhance rural PC? • Dissemination of information (resource kits) • Providing education • Nurse coordinators/navigators to improve coordination • Multidisciplinary team meetings • Use of common clinical assessment tools • Improved links between generalists and specialists • Shared policies, protocols and protocols • Use of patient-held record (Masso, 2009)

3. But… in Australia • After $5 million in funding for 15 projects (18 months to 3 years) outcome evaluations by Masso et al indicated that developments in rural PC were… • “difficult to sustain” • “proved difficult to maintain • “in general achieved limited success”

4. Why is change so difficult to sustain? • Lack of a good theoretical understanding of HOW interventions cause change • Innovations are not adapted to the LOCAL context to become part of day to day practice. This research takes up these issues by using a different approach to developing rural PC—creating a theory of change focused on the PROCESS of capacity development at the local level.

5. Theoretical perspective: Community capacity developmentViews rural communities as complex open systems

6. Communities are dynamic, living, social systems with interdependent processes • A never ending process of change & adaption is occurring through self-organization, self-creation & creativity • Communities can only be understood as a “whole” • Process builds on what exists and uses local networks

7. The Theory of Change Rural Palliative Care Program Antecedent Community conditions

8. Research Objectives • Validate a 4 phase conceptual model for developing rural palliative care programs • Implement and evaluate the model as a theory of change to develop rural palliative care programs

9. Research Outcomes • Model is conceptually validated to explain and predict the development of local palliative care programs in rural communities. • Applicable nationally and potentially internationally • Model is applicable to guide the development of local palliative care programs as a “theory of change” • Tool kit developed and evaluated • The development process, structure and dynamics of rural PC teams now understood.

10. Outcomes cont’d • Model is applicable as a guide for regional development to identify what resources are needed where and when. • Applicable to planning and service development by LHIN, health authorities, EOLC Networks etc. • Model is applicable to evaluate and track the evolution of regional teams. • Applicable to policy and decision makers who need to provide resources

11. Project 9: Kelley and Williams PIs Year 1 (2005-06)-Model validation (8 communities & 3 provinces) • Applying the model could explain and predict why some communities developed local palliative care and others did not • Capacity needs to be built sequentially in phases • Capacity development is gradual, dynamic, “bottom up” and sequential

12. Applying the model Years 2-5 (2006-10)-PAR study using model as intervention to develop palliative care programs • Longitudinal community case studies (2) • Cardston, AB & Terrace Bay, ON • Regional development case studies (2) • Northwestern Ontario • Hamilton Niagara Haldimand Brant Ethnographic, qualitative methods used to understand complexity and process of change. PAR approach.

13. Phases of the model guide the community assessment, goal setting, development of intervention plans (ongoing process) • Assess antecedent conditions • Develop the team • Grow the program • The need for interventions emerge and are implemented in order to systematically move the development process along. Tools are created and shared.

14. Role of an “outsider” • Help community self-assess their antecedent community conditions • Seek to be a catalyst • Engage the whole community in the development process • Support and facilitate local team development • Introduce tools, resources, education as the need emerges • Support local leader • Support the local team to grow the program as per model

15. The “keys to success in each phase” become the guide for local interventions. • Engaging the community • Educating providers • Working together/teamwork • Developing local leadership • Creating pride in accomplishments

16. Terrace Bay—two years progress • Have developed a local interprofessional & interagency team that meets regularly • Held successful LEAP education program • Participated in a Rural Palliative Care Workshop , CERAH Palliative Care Institute, Nov 08 • Developed and distributed community pamphlet • Reviewed several assessment tools and a toolkit, and developed their community program • Held a special meeting to update other agencies on the progress, and to launch the Schreiber-Terrace Bay Community Palliative Care Program

17. Held special meeting where CCAC community care coordinator presented an educational session on the in-home chart • Submitted a successful proposal jointly with Marathon Community Team for community palliative care education event to be held March 2010 • Need to undertake strategic planning this spring to set new goals for further growing the program (catalyst) • Progress impacted by other community issues such as closure of paper mill and H1N1

18. Rural PC Dynamics • Community progress shaped by internal & external forces • Change is a non-linear process • There is a need for an ongoing catalyst • Leadership is key throughout the process • Requires a sense of local empowerment • Education is a great facilitator to team development • The rural team does not often formally meet

19. Using the "Growing Rural Palliative CareModel" to Track Regional Palliative Care Development

20. Robinson et al. 2009 Most of the [rural palliative care] research lacks a strong theoretical basis. A well-articulated theoretical underpinning would provide one way to unify research efforts. Emerging models of rural palliative care that emphasize partnership and capacity building from the ‘‘ground up’ offer promise in this regard.

21. Reference Kelley, M.L., Habjan, S. Aegard J. (2004) Building capacity to provide palliative care in rural and remote communities: Does education make a difference? Journal of Palliative Care 20: 308-315 Kelley, M.L. (2007). Developing rural communities’ capacity for palliative care: A conceptual model. Journal of Palliative Care, 23(3), 143-153. Masso,M. & Owen, A. (2009) Linkage, coordination and integration: Evidence from rural palliative care, Australian Journal of Rural Health 17, 263-7 Robinson, C., Pesut, B., Bottorff, B. et al (2009) Rural palliative care: A comprehensive review. Journal of Palliative Medicine 12 (3) 253-258. Rygh, E.M & Hjortdahl (2007) Continuous and integrated health care services in rural areas. A literature study. Rural and Remote Health 7:766