Developing Rural Palliative Care: A Community Intervention Study

Mary Lou Kelley, MSW, PhD

ICE Team Meeting Hamilton, ON

May 2007

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

Advocacy

Education

Developing

palliative care

in

Communities:

A four phase model

Clinical careBuilding external linkages Building community

relationships

Process of PC Development

Antecedent community conditions

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

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)

Antecedent Community Conditions

Characteristics of

the community

& health care

practice that

provide a foundation

for developing

palliative care

Catalyst

A catalyst for change

occurs

in the community,

disrupting their

current approach to

care of dying people

Creating the Team

Generalist providers

join together

to improve community

care of the dying and

develop “palliative care”.

Growing the Program

The team continues

to build,

but now extends

into the community

to deliver

palliative care.

Major themes…

Strengthening the team

Engaging the community

Sustaining palliative care

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

Keys to success… Being community-focused

Educating providers

Working together/teamwork

Leadership (local)

Feeling pride in accomplishments

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

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

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

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.

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?

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.

What was the role of “external” people, policies or resources in your process?

What are the keys to success for developing rural palliative care?

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

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

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

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

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

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.

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)

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

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.

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.

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?

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

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)