developing palliative care in rural communities mary lou kelley, msw, phd allison williams, phd...
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Developing Palliative Care in Rural Communities
Mary Lou Kelley, MSW, PhDAllison Williams, PhD
EdmontonMay 20, 2010
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)
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”
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.
Theoretical perspective: Community capacity development
Views rural communities as complex open systems
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
Antecedent Community conditions
Rural Palliative Care Program
The Theory of Change
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
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.
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
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
Applying the modelYears 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.
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.
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
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
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
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
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
PHASE 1 - Antecedent Conditions PHASE 2 - PHASE 3 - Creating the Team PHASE 4 - Growing the Program
Catalyst
COMMUNITY Collaborative Vision for Sufficient Sense of Dedicated Right Leader Strengthening Engaging Sustaining
General Change Health Care Empowerment Providers People the Team the Palliative
Practice Infrastructure Involved Community Care
Community A Beginning
Not
Community B Complete Informal A
Community C A & B A
KEY - Phase 4 - ENGAGING THE COMMUNITY
A - Changing clinical practices: developing/implementing tools for care, care planning, family education and support
B - Educating and supporting community providers
C - Building community relationships to improve service delivery
KEY - Phase 4 - SUSTAINING PALLIATIVE CARE
A - Volunteering time
B - Getting palliative care staff and resources
C - Developing policies and procedures
Using the "Growing Rural Palliative Care Model" to Track Regional Palliative Care Development
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.
ReferenceKelley, 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