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