Transcript Does Peer Support Matter: How Do We Know?

Does Peer Support Matter:
How Do We Know?
Presented by:
Lynne Billings, Canadian Cancer Society (CCS), Manitoba Division
Julie Joza, Center for Behavioural Research and Program Evaluation
Amber Bielecky, Centre for Behavioural Research and Program Evaluation
Canadian Evaluation Society Conference, Vancouver, British Columbia, June 2003
Presentation Overview
•
Cancer Facts
•
Overview of the Canadian Cancer Society
•
Literature on Peer Support Programs
•
CancerConnection
•
Program Monitoring
•
Results
•
Use of Findings
•
Lessons Learned
Cancer Facts
Cancer Facts
• Cancer is primary health concern for
Canadians
• 1 in 3 Canadians will develop cancer
• 136,900 new cases of cancer in 2003
• 66,200 people will die of cancer in 2003
• 70% increase in new cases by 2015
Overview of the
Canadian Cancer Society
Canadian Cancer Society
• National, community-based organization of
volunteers
• National offices in Toronto and Ottawa
• 10 provincial and territorial divisions
• Numerous local community offices
• 220,000 volunteers
• 550 staff
Vision and Mission
Vision
•
Creating a world where no Canadian fears
cancer
Mission
•
Eradicate cancer and enhance the quality of
life of people living with cancer
Priorities
Research
Advocacy
Primary
Prevention
Information
Support for
People Living
with Cancer
CancerConnection
Peer Support Programming
•
Peer support programs links people living
with cancer (PLWC) with volunteers who
have had a similar cancer experience
•
PLWC have an understanding of and firsthand experience with the course and
treatment of the disease
•
Sharing the experience helps PLWC better
understand and cope with the disease
Literature on Peer
Support Programs
Supportive Care Framework
Physical
Psychological
Social
Individual Living
with Cancer
Spiritual
Practical
Informational
(Fitch, 1996)
Emotional
Peer Support Programs Supported by
the Literature
•
Peer support helps reduce the negative
impact of disease
•
Strong theoretical rationale
•
•
•
•
Stress and coping perspective
Social comparison theory
Helper-therapy principle
Optimal matching theory
Benefits of Peer Support
•
Hope
•
Encouragement
•
Reassurance
•
Decreased anxiety
•
Feel better informed
•
Able to identify problems more readily
CancerConnection
CancerConnection
• Telephone-based
• Matches clients with trained volunteers
• Provides referrals to other programs/services
Supportive Care Framework
Physical
Psychological
Social
Individual Living
with Cancer
Spiritual
Practical
Informational
(Fitch, 1996)
Emotional
CancerConnection History
•
1995 – Program started in response to the
need for more accessible peer support
programs
•
2002 - National CCS Board of Directors
approved evidence-based, outcome-driven
approach to development and delivery of its
services
CancerConnection is designed to
be...
• Accessible
• Responsive
• Free
• Confidential
Long-term
outcomes
Enhanced quality of life for people living with cancer
Intermediate
outcomes
Initial
outcomes
Outputs
Activities
Inputs
People living with cancer have the supportive care they need
Callers feel
supported
emotionally
Callers feel
supported
psychologically
Callers
feel
supported
socially
Callers
feel
supported
spiritually
Callers are better informed
about their cancer
experience and the
resources available to them
Number of timely, suitable matches made based on criteria important to the client
Number of referrals to other sources of information and support
Provide confidential telephone-based, peer support to people
living with cancer (and their caregivers)
Provider referral to other sources of support and information
Staff
Volunteer resources available for matches
Funds
Materials/Database
Information about other supportive care and information resources
How the Program Works
Request for Support
Intake
Match
Volunteer Follow-up
Client Follow-up
Close of Match
Duration of the
Support Contact
Essential Elements
1. Accountability to stakeholders
2. Supports organizational goal of
linking science to practice to policy
3. Standard service delivery
4. Easily accessible
5. Confidential
Essential Elements continued
6. Appropriate volunteer resources
7. Appropriate staff resources at all levels
8. Adequate financial resources
9. Promotion
Program Monitoring
Evaluation Partner
•
Centre for Behavioural Research and
Program Evaluation (CBRPE), U of Waterloo,
Ontario
•
Work jointly to develop evaluation strategy
•
Comparisons to key indicators across regions
over time
Evaluation Strategy
Monitoring
• internal quality assurance and
accountability
Outcome Evaluation
• assess program impact
Research
• evidence-based and linking science to
policy and practice
Indicators
Inputs
• promotion, financial resources, human
resources
Outputs
• program recognition, program quality,
service delivery, satisfaction, reach
Outcomes
• cost-effectiveness, impact
Current Program Monitoring
Purpose is to facilitate ongoing review and
decision-making related to:
1. reach
2. access
3. promotion
4. volunteer training
5. client satisfaction
Protocol
Request for Support
Intake
Match
Request
clients’
permission to
send survey
Volunteer Follow-up
Client Follow-up
Closing of Match
Duration of
Support Contact
Survey Eligibility Criteria
• Matched with a volunteer
• Consents to receiving a survey
How Are We Doing? Survey
31
32
33
Implementation
•
Returned to the Division Office
•
Forwarded to CBRPE for input and analysis
•
Entered into MSAccess database
•
Data report generated
•
Written report forwarded to the Division
Office
Program Monitoring in Manitoba
•
Pilot tested the instrument and protocol in 2000
Phase 1: October 2000 to March 2001
•
Revised protocol and instrument in 2001
Phase 2: April 2001 to December 2001
•
Continued with revised protocol and instrument
Phase 3: January to June 2002
Phase 4: July to December 2002
Results
Response Rates
Phase 1: RR – 31% (50/163)
Phase 2: RR – 33% (86/264)
Phase 3: RR – 44% (53/120)
Phase 4: RR – 37% (54/148)
Overall (all 4 Phases): RR – 35% (243/695)
Reporting Protocol
Each phase Manitoba provides:
1. Description of all clients who contact program
- gender
- year born
- urban/rural residential location
- cancer type
- year of diagnosis
- first diagnosis/recurrence status
- patient/caregiver status
2. List of services delivered
3. Completed surveys
Reporting Protocol continued
Each phase CBRPE provides:
1. Reach analysis
2. Detailed picture of services delivered
3. Representativeness analysis
4. Survey findings
Reach Analysis
• Comparison of cancer patients in Manitoba
with cancer patients of the program
Reach: Gender
Manitoba Cancer Patients
Program Clients (Patients only)
6%
51%
49%
Male
Female
94%
Reach: Cancer Types
Manitoba Cancer Patients
Program Clients (Patients only)
10%
15%
8%
1%
6%
8%
3%
7%
67%
Breast
Lung
Colorectal
Prostate
Other
75%
Reach: Urban/Rural Location
Manitoba Cancer Patients
Program Clients (Patients only)
3%
3%
19%
41%
56%
78%
Urban
Rural
Non-MB Residents or Missing
Reach: Age Groups
Manitoba Cancer Patients
3%
2%
Program Clients (Patients only)
3%
9%
11%
19%
31%
19%
33%
36%
0 to 24 yrs
25 to 44 yrs
45 to 59 yrs
60 to 74 yrs
75+ yrs
Missing
34%
Cancer Patient Clients
(further described)
• 85% diagnosed in 2002
• 86% experiencing a first diagnosis of cancer
(as opposed to a recurrence)
• 93% cancer patients (as opposed to
caregivers)
Services Delivered:
July to December 2002
226 in contact
with the Manitoba
Division
CancerConnection Program
190 resided in
Manitoba
(176 patient clients/
14 caregiver clients)
153 matched
with a volunteer
6 referred to
another organization
36 resided in
another province
9 given
information
16 declined
support
22 did not
receive support
5 unable to be
matched
1 unable to
make contact
with volunteer
Representativeness Analysis
• Comparison of survey respondents to all
clients of the program
•
•
•
•
•
•
•
gender
cancer type
rural/urban location
age
year of diagnosis
1st/recurrence status
patient/caregiver status
• Survey respondents and clients similar
Survey Findings
• Referral sources
• Number of contacts
• Contact delivery method
• Topics discussed
• Access
• Overall service
• Volunteer match
• Perceived benefits
Referral Sources
60
Percent
50
40
30
20
10
0
Hlth Pro
CCS
Selfreferral
Friend
Media
Other
Contact Delivery Method
Calls and
Visits
35%
Calls
Only
55%
Visits
Only
10%
Clients’ Rating of Access
100
Percent
80
60
40
20
0
Timely
Untimely
Access Rating
Percent
Period Between Diagnosis and
First Volunteer Contact
70
60
50
40
30
20
10
0
3
4
5 to 8
Period (in weeks)
9+
Number of Contacts
25
Percent
20
15
10
5
0
1
2
3
4
5
Number of contacts
6
7+
Satisfaction with Number of
Contacts (of completed)
100
Percent
80
60
40
20
0
Just Enough
Too Few
Satisfaction Rating
Too Many
Top 5 Topics Discussed
1.
Emotions and Feelings (83%)
2.
Personal Experiences (76%)
3.
Access to Services (60%)
4.
Recovering from Surgery (59%)
5.
Treatment Options (53%)
Topics Would Have Liked to Discuss
• Dealing with side effects
• Recovery process
• Financial issues
• Nutrition
• Physical activity
• Treatment options
• Emotions
• Insight into their cancer
Rating of Match
50
Percent
40
30
20
10
0
Poor
Moderate
Good
Rating of Match
Excellent
Criteria for a “Good Match”
• Cancer experience (cancer type, treatment, surgery, age
at diagnosis)
• Age
• Gender
• Family situation
• Residential location
• Similar circumstances (unelaborated)
How to “Improve the Match”
Make the volunteer more comparable in terms of…
• Residential location
• Age
• Cancer experience
(cancer type, surgery, treatment)
• Religion
• Similar circumstances
(unelaborated)
Benefits
100%
5 (+)
4
3
2
1 (--)
Percent
80%
60%
40%
20%
0%
et
y
s
ne
ul
g
in
op
C
i
nx
A
f
pe
Ho
Benefit
Benefits continued
100%
5 (+)
4
3
2
1 (--)
Percent
80%
60%
40%
20%
0%
l
He
ul
pf
a
ur
co
En
ng
gi
e
iv
e
iv
at
rm
fo
In
t
or
pp
Su
Benefit
Percent
Importance of Volunteer Having
Experienced Cancer
80
70
60
50
40
30
20
10
0
1
Not at all
Important
2
3
4
Importance Rating
5
Extremely
Important
Percent
Overall Satisfaction with the
Program
45
40
35
30
25
20
15
10
5
0
1
Completely
dissatisfied
2
3
4
5
6
7
8
Satisfaction Rating
9 10
Completely
satisfied
Use of the Findings
Manitoba Division Policy
Governance Model
Governance
Process
BoardExecutive
Director
Relationship
Ends
Executive
Limitations
Manitoba’s Use of Findings
•
•
•
•
Monitoring Report to the Board on the
achievement of Ends
Justify program maintenance and growth
Planning and budgeting
Feedback to the National Management
Team
Manitoba’s Use of Findings
continued
•
•
•
•
Indirectly monitor volunteers and staff
Program promotion
Volunteer recruitment and training
Motivating volunteers
Lessons Learned
Lessons Learned by Service
Provider (Manitoba)
•
Recognize peer support as an area of
excellence
•
Importance of objective data for program
management and decision making
•
Value of partnership with a centre capable of
conducting program evaluation
Lessons Learned by Evaluator
(CBRPE)
•
Ongoing relationship
•
Impact of results
•
Limitations and strengths of our approach
Limitations of Our Approach
• Mailed survey with no follow-up
• Results tend to be positively skewed
• Further instrument validation is needed
Strengths of Our Approach
• Ethics review conducted
• All clients receive the survey
• Low respondent burden
• Maintain client anonymity
• Sensitive to clients’ health status
• Cost-effective
Future Directions
•National roll-out of monitoring
•More in-depth data analysis
•Outcome evaluation
•Research strategy
• Quality of life measure
• Caregiver needs assessment
Contact Information
Lynne Billings
Julie Joza
Canadian Cancer Society,
Manitoba Division
Centre for Behavioural Research
and Program Evaluation,
204-774-7483
University of Waterloo
[email protected]
519-888-4567 ext. 6478
www.cancer.ca
[email protected]
www.cbrpe.uwaterloo.ca
Amber Bielecky
519-888-4567 ext. 5163
[email protected]