Supporting Self-management in the Voluntary Sector – the Australian Experience Tanya L Packer, PhD Professor, 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 goal The right people The power of data / evidence A collective will Copyright © 2006 by Earl 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 Managers Voluntary Organization Copyright © 2006 by Earl 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

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, Parkinsons 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 A ctivities R elationships T reatment Participation in Chosen Lifestyle Health Professional Support Co-morbidity Readiness for Change Severity of condition Self-efficacy Carers Technology System SES / Culture Health Beliefs Health/Social Care Utilization Health Outcomes Curtin pARTicipation Model Self-management in the voluntary sector – The Focus and the Content

What we learned The 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 TopicPsychoeduational group stage Session 1Understanding vision loss Orientation and Exploration Session 2Strategies for maximizing remaining vision and using other senses Session 3Staying in touch Session 4Looking right, feeling right, meeting your personal care needs Session 5Household management Session 6Stepping out Session 7Leisure and recreation Session 8Living in the community Termination/ Graduation Working/Production Program Structure and Content

ComponentsParticipants Valued Sharing stories Personal narratives = validation, support, new learning ActivitiesTrial and error InformationProblem solving & personal selection of strategies ParticipantsTo give as well as receive Health professionals Knowledge base

Information Activities Expert Panel

Pilot Testing Vision Self-management Project Number of Participants / Pilot 123 Recruited1011 Withdrew for personal reasons 101 Withdrew for technical reasons 640 Active participation to end of program 027 Development – The Process of Getting it Right

Randomized Control Trials

Primary Outcome Measure Activity Card Sort ANCOVA Pre to Post p <.001 Post to follow-up p <.001 Activity Card Sort Higher scores = Improvement Geriatric Depression Scale Lower scores = Improvement ANCOVA Pre to Post p <.001 Post to follow-up p <.001 Generalized Self-efficacy Higher scores = Improvement ANCOVA Pre to Post p <.001 Post to follow-up p =.001

GroupNumber Online Fatigue Self-management Group33 Online Information Only Group28 No Intervention Group34 Total95

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. 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 & Funding Electronic 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) BaselineEnd Part 1: Organization of health care delivery system Part 2: Community linkages Part 3: Self –management support Part 4: Decision support Part 5: Delivery system design Part 6: Clinical information systems 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 organization TThe 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 goal Participation in every day life, guided by the people with expertise. The right people People with the condition, managers, practitioners and researchers. The Evidence/ data Local & 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