Developing Rural Palliative Care: A Theory of Change

Mary Lou Kelley, MSW, PhDAllison Williams, PhD

EdmontonMay 20, 2010

Antecedent Community conditions

Rural Palliative Care Program

The Theory of Change

What is capacity development?

Capacity is the capability of individuals, groups, organizations or communities, to perform or produce something of value, related to their desired development or performance.

Capacity development is the evolutionary process of change and adaptation that occurs from inside as individuals, groups, organizations or communities act to accomplish their goals.

(Chaskin 2001; European Centre for Development Policy Management 2003; Kaplan 1999)

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)

7 interdependent, interacting concepts influence change (process/outcome variables)

Capabilities (individual & team) Performance (individual & team) Change & adaptation (core concept), includes time Management (leadership) Internal features & resources (team) External intervention (resources) External environment (community & beyond)

(Adapted from Baser 2003; European Centre for Development Policy Management 2003)

4. Growing the Program

Performance Team capabilities

3. Creating the TeamInternal features and

resources of the team (teamwork)

Leadership

2. Catalyst Incident

1. Antecedent Community Conditions

Individual capabilitiesExternal environment

The Model:The Growing Tree

Antecedent Community conditions

Rural Palliative Care Program

The Theory of Change

Antecedent Community Conditions

Characteristics of

the community

& local health care

practice that

provide a foundation

for developing

palliative care

Phase 1: Having antecedent conditions

Sufficient local health infrastructure; having collaborative generalist practice; sharing a vision of change and a sense of local empowerment.

Keys to success are; working in a small community, working together, and being community focused.

Characteristics of rural health

Generalist practice

Interdisciplinary & team based work

Flexibility of roles and responsibilities Enhanced scopes of practice e.g. nurse Enhanced knowledge and skill base

Delegation of tasks to primary care providers

Cultural adjustments

I think this is one of the advantages of rural death, is that you don’t have access to all the high tech resources and specialists, on the other hand, I think there is more flexibility [yes] in the system [Mm hmm]. And we’ll just move them flexibly through through the system and they’re in the hospital, they’re on home care….and lets not have too many policies that are gonna be barriers [Mm hmmm] to doing the work on the front line

We built on what exists…

We didn’t create a lot of new positions to do this…everybody was already there….we did it with what we had….we were proud of that.

One key [is] to first use the local things, whatever they have: their local wisdom, their local this, and then add to it instead of introducing something that’s completely new.

I think one of the benefits of living in a small community is that people do know one another and if people have good working relationships everything runs smoothly. So, prior to having the palliative care team established, there was already a good working relationship with the hospital, the personal care home and the community. The palliative care team has just strengthened those bonds

Phase 2: Experiencing a catalyst for change

A person or event disrupts the community’s status quo, e.g. a local champion, new policy or education

It acts upon the antecedent conditions—transforms the vision for change into action

The catalyst triggers collective action to improve care of dying people in the community

Catalyst

A catalyst for change

occurs

in the community,

disrupting their

current approach to

care of dying people

Examples of catalysts.. Palliative care education A “bad death” A “local champion” Project funding/development initiative MOH Policy change-end of life care strategy Action Research

Cannot be “imposed” from outside

So, anyway, to make a long story short, the lady died in hospital several months after we were all introduced to her and she died a miserable death, … we all felt like we really missed the boat with her. She had so many end of life issues that we couldn’t even begin to deal with. We didn’t know how to, we didn’t have the resources and we really felt like she dropped through the cracks and we just dumped her really. We felt awful about it and we didn’t ever want it to happen again!

Phase 3: Creating the local team

Requires having dedicated providers and getting the right people involved.

Keys to success are; working together, dedication, and physicians’ support

Creating the Team

Generalist providers

join together

to improve community

care of the dying and

develop “palliative care”.

Creating the team… The people who started on the team were very

committed to the whole idea of palliative care, recognized that we could improve the services that we were providing if we worked together. And I’m not suggesting that palliative care was not being provided because of course it was in the hospital, in the community. Just everybody was doing their own thing and nobody was coming together to discuss issues or to have each other for support … {Mm hmm}, [or] organize some educational inservicing.

Relationships & Communication I think a really important …how well this group

communicates amongst each other. Without these damn titles--doctor, nurse, social worker I think that … respect that exists amongst us… we’re all equal, we’re all members of the same team. I think that’s really important. People have no hesitation to pick up the phone and call each other and bounce ideas off each other because we know each other so well.

Phase 4: Growing the program

Involves strengthening the team, engaging the community and sustaining palliative care.

Keys to success are remaining community -focused, educating community providers, teamwork, having local leadership and feeling pride in accomplishments.

Growing the Program

The team continues

to build,

but now extends

into the community

to deliver

palliative care.

I never feel that I am out there alone. I can pick up the phone; I can talk to our pharmacist who is really tremendous support for us all. If I’ve got medical problems, I can pick up the phone and talk to [others]. So, that back-up, the support that other people can give; so I don’t feel like I’ve got to know it all or do it all. I couldn’t.

Doing it with what we had We try to do the best we can with our clients,

with what we have. And I think that a great asset to us is because we have such good communication and a great team of people work with in the community, who are very interested in caring.

…We tried to be innovative and flexible. We sort of get our knuckles rapped for some of those innovative things. But I guess I strongly believe that unless you do those things, we’re never going to progress. So maybe we need to do things, get our knuckles rapped but then, you know, help other people to see the light

Strengthening the team Developing members’ expertise

Sharing knowledge and skills Creating linkages outside the community Learning-by-doing (taking risks)

Developing members’ self-confidence

Engaging the community Changing clinical practices

Developing/implementing tools for care (e.g. in home chart, ESAS, PPS)

Care planning Family education & support

Educating and supporting community providers

Building community relationships to improve service delivery

Sustaining palliative care

Volunteering time

Getting palliative care staff and resources

Developing policy and procedures

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

Reference

Kelley, M.L. (2007). Developing rural communities’ capacity for palliative care: A conceptual model. Journal of Palliative Care, 23(3), 143-153.