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