Living Well, Dying Well: Active Decision Making for

Family Caregivers

Lorrianne Topf, RN, MSN, CHPCN(c) Learning and Effectiveness Leader North Okanagan Hospice Society Vernon, BC March 3, 2017

Disclosure slide

We do not have an affiliation (financial or otherwise) with a

commercial organization.

Acknowledgements

Funding and assistance for this project were received from the Hospice innovation Fund-Seed Grant Program, a joint initiative between the BC Centre for Palliative Care and BC Hospice Palliative Care Association, which was funded by a grant from the BC Ministry of Health

Community Foundations North Okanagan (funding)

North Okanagan Hospice Society

Interior Health (partner)

Lumby Health Society (partner)

UBC Okanagan (partner)

Contents

Who we are

The Problem

Goal and Objectives

What we did

Inputs, Outputs and Outcomes

Evaluation

Lessons learned

Who we are

UBC Okanagan

Facilitator

Dr. Carole Robinson

Interior Health

Co-Facilitators

Jennifer Fisher

Brenda Pickering

Beth Lipsett

Clara Dyck

North Okanagan Hospice

Society

Co-Facilitator

Lorrianne Topf

Admin Support

Tanya Stilborn

Volunteer Support

The Problem

Rising demand for a palliative approach to care • People live longer • More complex healthcare needs

Our community identified

• Need for community education • Awareness for individuals living with a life-limiting

illness and their Family Caregiver’s (FCGs) FCGs struggle with

• Being unprepared and inadequately supported • Caregiving decision making

Goal and Objectives

Goal: Inform and educate residents of the North Okanagan (early in their illness journey) about a Palliative Approach to care.

Objectives: To support people affected by life-limiting illness to be active in their own care and caregiving.

What we did

Created a workshop utilizing a Family Decision Making Guide and combined this with local resources

Dr. Carole Robinson from UBC Okanagan facilitated

Interior Health staff and North Okanagan Hospice Society staff and volunteers assisted

Held 3 separate workshops in the North Okanagan

Vernon (Urban) and Armstrong (Rural) and Lumby (Rural)

Evaluated the process

Created a Logic Model to guide the process

Inputs Outputs Outcomes

What We Invest

Information/data

Staff

Money

Partners

Experts

Written Resources

Activities

Planning

confirmation of

partners and

co-facilitators

Develop

information

packets

Marketing

Conduct

workshops

What the Results Are:

Learning

Appreciation of a palliative

approach to care

Awareness of caregiving issues

and options

Awareness of resources

Change in:

Capacity, Preparedness, Support

Participation

(Who we will

reach)

Persons with

life-limiting

illness

Family

Caregivers

Objectives:

To support

people

affected by

life-limiting

illness to be

active in

their own

care and

caregiving.

Evaluation: Number of individuals living with a life-limiting illness and their FCGs affected by the problem.

Number of staff, co-Facilitators, and partners recruited and expertise provided.

Accountability for all resources used.

Evaluation: A series of workshops developed, implemented, and evaluated:

Number of participants who are new to NOHS provided workshops.

Identified gap between desired and actual resources.

Reports, papers, presentations to disseminate information re: process and results.

Identified gap between desired and actual resources.

Workshops A:

% of participants who reported after

the workshop:

Enhanced appreciation of a Palliative Approach to care and caregiving.

Enhanced awareness of caregiving issues and options.

Enhanced awareness of local resources; enhanced awareness of desired resources.

The Problem: There is a rising demand for a palliative approach to care as people live longer and have more complex healthcare needs. There is an identified need for community education and awareness for individuals living with a life-limiting illness and their FCGs. FCGs struggle with being unprepared and inadequately supported. They have difficulty identifying the caregiving decisions they must make or how to go about making those decisions.

Goal:

Inform and

educate

residents of

the North

Okanagan

(early in

their illness

journey)

about a

Palliative

Approach to

care.

Evaluation Measures

Logic Model

Inputs

What We Invest

Information/data

Staff

Money

Partners

Experts

Written Resources

Outputs

Activities

Planning

Confirmation of partners

and co-facilitators

Develop information

packets

Marketing

Conduct workshops

Participation

(Who we will reach)

Persons with life-limiting

illness

Family Caregivers

Resources

Outcomes

What the Results Are:

Enhanced Appreciation of a Palliative Approach to Care

Enhanced Awareness of caregiving issues and options

Enhanced Awareness of resources

Change in:

Capacity, Preparedness, Support

Evaluation

Percentage of participants after the workshop who indicated they felt better prepared for providing care for someone living with a life limiting illness

Vernon: 80%

Armstrong: 80%

Lumby: 90%

Evaluation

Percentage of participants after the workshop who indicated there was a difference between what local resources presented could offer and what they needed

Vernon: 40%

Armstrong: 0%

Lumby: 10%

Evaluation

Percentage of participants after the workshop who indicated they had a better understanding of available local resources

Vernon: 92%

Armstrong: 90%

Lumby: 90%

Evaluation

Percentage of participants who felt it was likely that they would use the information presented in the workshop

Vernon: 76%

Armstrong: 90%

Lumby: 80%

Comments

What information from this workshop was most helpful to you?

Preparing for caregiving in advance

The contact # for home and community care

Resources, overview and guide

Validation of how in depth caregiving is

Recognizing the importance and value of the caregiver

Realizing that ‘you are not alone’

Comments

Helpfulness of the Decision Making Guide

Preparing in advance will be the key

The step by step approach to care

Each section highlights important issues

Reminders to reevaluate the situation/health

Lessons Learned

Family caregivers proved to be elusive and difficult to find

Differences between the expectations of urban and rural participants

Partnerships and volunteer support proved essential for the success of this project

Questions/Discussion

Ideas for finding family caregivers for these events

Thoughts on the differences when caring in rural or urban environments

Contact Information

Lorrianne Topf, RN, MSN, CHPCN(c)

Learning and Effectiveness Leader North Okanagan Hospice Society Vernon, BC T: 250-503-1800 ext. 104 E: lorrianne@nohs.ca