supporting self-management in the voluntary sector – the australian experience tanya l packer, phd...
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Supporting Self-management in the Voluntary Sector – the Australian
Experience
Tanya L Packer, PhDProfessor, School of Occupational Therapy, Dalhousie University, Canada
Scotland 2010
Western Australia
Australia's largest state occupies the entire western 1/3 of the Australian
continent has 2.2 million inhabitants (10% of the national
total) 85% live in the south-west corner of the state.
Supporting Self-management in the Voluntary Sector – the Australian Experience
Topics for Today: Self-management interventions –
focus and content Self-management interventions –
development and effectiveness System change and Sustainability
Keys to Success:A common goalThe right peopleThe power of data / evidenceA collective will
Copyright © 2006 byEarl Dotter & AFB
Voluntary Sector in Australia
Our vision That people who are
blind or vision impaired share a quality of life equal to other Western Australians.
Services Professional services Guide dogs Library Recreation Leisure Program
Our Vision: A quality of life for
people living with multiple sclerosis which is not compromised by their diagnosis
A cure for multiple sclerosis
Services Professional services Support groups Recreation Residential homes Respite Care
The People
Researchers
Service Providers
People with vision loss /
MS
Senior ManagersVoluntary
Organization
Copyright © 2006 byEarl Dotter & AFB
Needs Assessment & Living Well Program - RCT
Program Re-design -3 Self-management
Programs
Self-management Support Workforce -Training Modules for
Staff
Quality Monitoring –Core data Set +
Electronic Capture
Sustainable Funding – Aggregated
Reports of Effectiveness
Organizational Change
Online Version Developed
Pilot Test
Managing Fatigue - Face-to-face Group Introduced
RCT #1
National Training of Therapists
RCT #2
Online and face-to-face
programs are available
Are you over 20 years old?
Are you a person with Multiple Sclerosis?
Would you like to join us in a research project to evaluate
the Fatigue Self-management Program?
Contact:Setareh Ghahari
Tel. (08) 9266 1790 or 0401 442109E-mail:s.ghahari@ curtin.edu.au
ManagingFatigue
A sixA six--week course week course to help you to help you manage your energymanage your energy
Participants
Trial &
Error
Health
Pro
fess
iona
l
Information
Sharing Stories
Focus Group
Pilot Test
Technical Problems
Alternatives in the Next Pilot
Confirmed Strengths & Concerns
Investigation of Alternatives
Self-management in the voluntary sector – focus and content
Who is the focus? Asthma Heart disease Arthritis Diabetes
Who is not the focus? Depression Neurological conditions Disability Sensory loss (vision and hearing)
Why? Course not affected by modifiable risk factors Control not as dependent on medication
Everyday Life with Vision Loss
Difficulty identifying medications
Difficulty bathing, dressing and walking around the house
Difficulty identifying the face of loved ones.
Difficulty in communication due to inability to see faces and expression.
Everyday Life with MS, Parkinson’s Disease and….
Fatigue: Impact on Quality of Life, employment,
activity participation Common symptom: 59-97% in
neurological conditions Predicts cost of MS and economic
pressure (McCabe, 2003)
Major Life Changes: Performance in daily life including
parenting Lost employment
The ART of Self-management
Activities
Relationships
Treatment
Participation in Chosen Lifestyle
Health Professional Support
Co-morbidity
Readiness for Change
Severity of condition
Self-efficacy
Carers
Technology
Curtin University
Self-management
Research Group
Activity
Relationship
Treatment
pARTicipation Model
System
SES / Culture
Health Beliefs Health/Social CareUtilization
Health Outcomes
Curtin pARTicipation Model
Self-management in the voluntary sector –The Focus and the Content
What we learnedThe Goal
Participation in everyday life is the priority for people
Voluntary organizations strive to support this goal.
This goal can be shared by all involved.The People
Health professional and charitable backgrounds may need to be challenged.
The Power of Data/Evidence The voice of people with disability has strength.
The Collective Will Does not emerge without effort and
communication
Self-management in the voluntary sector–
Development and Effectiveness
Key to Development
Focus Session Topic Psychoeduational group stage
Session 1 Understanding vision loss Orientation and Exploration
Session 2 Strategies for maximizing remaining vision and using other senses
Session 3 Staying in touch
Session 4 Looking right, feeling right, meeting your personal care needs
Session 5 Household management
Session 6 Stepping out
Session 7 Leisure and recreation
Session 8 Living in the community Termination/Graduation
Working/Production
Program Structure and Content
Components Participants Valued
Sharing stories
Personal narratives = validation, support, new learning
Activities Trial and error
Information Problem solving & personal selection of strategies
Participants To ‘give’ as well as ‘receive’
Health professionals
Knowledge base
Participants
Trial &
Error
Health
Pro
fess
iona
l
Information
Sharing Stories
Information
Activities
Expert Panel
Participants
Trial &
Error
Health
Pro
fess
iona
l
Information
Sharing Stories
Pilot Testing
Focus Group
Pilot Test
Technical Problems
Alternatives in the Next Pilot
Confirmed Strengths & Concerns
Investigation of Alternatives
Vision Self-management Project
Number of Participants / Pilot
1 2 3
Recruited 10 11 11
Withdrew for personal reasons
1 0 1
Withdrew for technical reasons
6 4 0
Active participation to end of program
0 2 7
Development – The Process of Getting it Right
Agreed to ParticipateN=79
RandomisedN= 77
Allocated to CLP armN= 36 Did not attend CLP as
allocated, received ‘usual care’ only
N= 9
Completed Data Collection
(Intent to treat analysis)
N=8
Missing Key DataN= 1
Allocated to “Usual Care” N= 41
Withdrew from study due to ill health (did not complete data
collection)N=1
Completed Trail as Randomized
N=40
CLP arm Usual Care arm
IneligibleN=2
Completed Trail as Randomized
N=27
Page 1
Study Design
Completed CLP as allocated
N=27
Too Ill N=2
Unable to Attend due to prior commitments
N=5
No Longer Interested
N=1
Withdrew from study due to Ill
health (did not complete
data collection)
N=1
Randomized Control Trials
Primary Outcome MeasureActivity Card Sort
0.3
0.4
0.5
0.6
0.7
0.8
pre-test post-test 12 week follow-up
Usual Care
CLP
0
2
4
6
8
10
12
pre-test post-test 12 week follow-up
Usual Care
CLP
ANCOVAPre to Post p <.001Post to follow-up p <.001
25
26
27
28
29
30
31
32
pre-test post-test 12 week follow-up
Usual Care
CLP
Activity Card SortHigher scores = Improvement
Geriatric Depression ScaleLower scores = Improvement
ANCOVAPre to Post p <.001Post to follow-up p <.001
Generalized Self-efficacyHigher scores = Improvement
ANCOVAPre to Post p <.001Post to follow-up p =.001
Group Number
Online Fatigue Self-management Group 33
Online Information Only Group 28
No Intervention Group 34
Total 95
Fatigue
YES
NO Randomized
Transportation YES
Telephone Interview
Face-to-face Fatigue Self-management Group
Online Fatigue Self-management Group Online Information Group No Intervention (control) Group
Results (Repeated Measures ANOVA)
Improvement in Fatigue
Improvement in Participation
Online √ p=0.025 power = 69%; Effect=Med-large √
p=0.001; power = 96%; Effect = Large
Information only
√p=0.001; power = 96%
Effect = Large √p=0.000; power = 99%; Effect = Large
No Intervention X p=0.066; power = 59%Effect=Med-large X p=0.062; power = 86%
Effect=Med-large
What we learned
The Goal Only brave organizations allow rigorous scrutiny
The People People with chronic conditions can help to guide
intervention focus, content and delivery. Senior managers must be prepared for the results Self-management support skills do not automatically
transfer to online environments
The Power of Data/Evidence Usual care is not always best practice Local evidence is more powerful in making change than
“research evidence” Self-management increased demand on agencies
The Collective Will Change must be supported at all levels
Organizational Change and Sustainability
In Scaffa, M. E., Reitz, S. M. & Pizzi, M. A. (2010) Occupational Therapy in the Promotion of Health and Wellness. (pp. 50). Philadelphia: F. A. Davis Company.
Needs Assessment & Living Well Program - RCT
Program Re-design -3 Self-management
Programs
Self-management Support Workforce -Training Modules for
Staff
Quality Monitoring –Core data Set +
Electronic Capture
Sustainable Funding – Aggregated
Reports of Effectiveness
Organizational Change
Interventions - Workforce - Training
modules for providers
Quality - Electronic capture of outcomes
Funding – Aggregated reports
Organization – Project evaluation
Workforce -Self-management Competencies
Statistically Significant Improvement on All (p<0.00)
I have a good understanding of •the principles self-management and self-management support.•The principles of self-efficacy.•Action planning for people with chronic conditions.
I am confident that I can •use the principles of self-management and self-management support in my day to day practice.•the principles of self-efficacy in my day to day practice.•assist clients to develop an action plan.•facilitate self-management programs.
National Eye Health Initiative projects have been funded by the Commonwealth Government Department of Health and Ageing
Monitoring & FundingElectronic Capture of Outcomes
For each self-management program: Potential tools tested for sensitivity to change and
clinical utility. A core set selected for each intervention program. Electronic capture in existing database made
possible. Outcomes aggregated and reports automated.Results: Staff use the core tools and the system on a routine
basis. Individual client and aggregated outcomes can be
measured and reported. Reports to funders are automated.
National Eye Health Initiative projects have been funded by the Commonwealth Government Department of Health and Ageing
Organizational Change:Assessment of Chronic Illness Care (ACIC)
Baseline End
Part 1: Organization of health care delivery system
5.0 6.0
Part 2: Community linkages 5.0 7.0
Part 3: Self –management support 5.9 7.5
Part 4: Decision support 4.4 5.8
Part 5: Delivery system design 4.9 8.5
Part 6: Clinical information systems
5.9 8.2
National Eye Health Initiative projects have been funded by the Commonwealth Government Department of Health and Ageing
What we learned?
The Goal Sustainability is more than new interventions & research Workforce sustainability must be planned. Evaluation culture can be developed. A whole of service self-management culture IS possible.The People Champions and catalysts are needed People involved develop pride & ownership. Historical and professional boundaries can be overcome SSelf-management support is applicable across the organizationTThe Evidence / data. Self-management support is learned through practice.The Collective Will Organizational cultures need respect. Research and practice are linked and can occur together. Funding is important in all contexts but in-kind contributions
made this possible in the voluntary sector.
Health & Medicine. The West Australian 15/10/08 p.2
Self-management in the Voluntary Sector – is thriving!
The right goalParticipation in every day life, guided by the people with expertise.The right peoplePeople with the condition, managers, practitioners and researchers.The Evidence/ dataLocal & rigorous is best.
The Collective Will
To work together To overcome resistance To accept differences To make a contribution to the
whole To share the outcome