The Living Well with a Disability Program:A Health Promotion and Wellness Program for
Adults with Disabilities
Craig Ravesloot, PhD Tom Seekins, PhD University of Montana
Glen White, PhD University of Kansas
Tony Cahill, PhD University of New Mexico
Acknowledgements Independent Living Centers and their
consumers Disability and Health Team– NCBDDD
Overview
1. Define the priority population and intervention content
2. Describe the structure and content of the intervention
3. Program evaluation
4. Dissemination and Training
Priority Population
Health outcomes for people with disabilities?
Inclusion criteria?
Secondary Conditions
“medical, social, emotional, family, or community problems that a person with a primary disabling condition likely experiences”
-Chapter 6, Healthy People 2010
Participatory Action Research as a Design Strategy
A dynamic interplay between researchers and consumers.
Consumers inform the research about important goals, key variables, their likely interactions, the appropriateness of various procedures, and the significance of outcomes.
Benefits of PAR in Developing Living Well
We identified a total of 43 secondary conditions. We found 29 in the literature and consumers
added 14. Of the top 12 conditions, 8 were the ones that
consumers included and that we had not found in the literature.
Top Ten Secondary Conditions
Problems with mobility
Joint/muscle pain
Physical conditioning problems
Fatigue
Chronic Pain
Arthritis
Difficulties with Access
Sleep disturbance
Contractures
Depression
Priority Population Administered Secondary Condition Surveillance
Instrument to 594 individuals with a disability. Factor analysis of secondary conditions and
primary impairments There was no consistent relationship between
secondary conditions and primary impairments.
Ravesloot, C., Seekins, T. & Walsh, J. (1997). A structural Analysis of Secondary Conditions Experienced by People with Disabilities. Rehabilitation Psychology, 42(1), 3-16.
Health Behavior Theories
Sense of Coherence (SOC) (Antonovsky, 1987)
– Sense of Comprehensibility
– Sense of Manageability
– Sense of Meaningfulness
Health Behavior Theories
Attribution Style (Seligman, 1992)
– Permanent vs. Temporary
– Global vs. Specific
– Personal vs. External Hope (Snyder, 1991)
– Pathway
– Personal Agency
Putting it all together Living Well with a disability helps people
identify a pathway (Hope) for reaching meaningful life goals (SOC). Personal agency (Hope) is developed via problem-solving (SOC) and attribution retraining (AS). Improving health status is a means to an, rather than the end itself.
Goal Setting
Consumer developed
Life satisfaction
Problem-solving
Develop a plan for working on the goal Begin to consider the connection
between healthy behavior and goal pursuit
Begin to develop hope that the goal is possible
Shift goals when necessary
Healthy Reactions
Learn how personal reactions affect emotions and hope
Learn how attributions for frustrating events can affect outcomes (e.g. attribution for lost keys)
Beating the Blues Learn how to limit depressed mood to
continue working on goal
Healthy Communication
Learn communication skills that lead to improved goal progress
Learn ideas for communicating with medical personnel
Information Seeking
Find and use specific information for one’s own situation
Address very individualized needs
Physical Activity
Learn how physical activity is related to goals
Learn to increase physical activity in small incremental steps
Nutrition
Fuel and performance are closely related Learn specific ways to improve the fuel
used for pursuing goals
Advocacy
Many important obstacles are systems issues that require group interventions
Work toward long term goals that may be impossible because of systems issues
Maintenance
Learn skills for making behavior changes into habits
Learn how to re-start the process when it gets derailed
Living Well Program Implementation
Typically delivered as an 8-week workshop Groups of 8-10 are facilitated by staff from a
center for independent living (CIL) Groups meet 2 hours per week Facilitator guides the group 10 chapters of a
self-help workbook CIL facilitators trained in either a 2-day
experiential training seminar or via internet
With support from the Disability and Health Program of the NCBDD and the Christopher Reeve Foundation, a consortium of four state disability and health programs developed a longitudinal evaluation of Living Well.
NY, NM, IA and MT participated in the development of the evaluation.
Developing a National Evaluation Strategy
Consortium Goals Produce usable information to inform public
health policy Meet the needs of public health
practitioners for a “user-friendly” evaluation process
Meet the needs of researchers for a rigorous process that produced valid, reliable outcome measures.
Operationalizing Effectiveness
Utilization of health care and health care costs (eight items)
General physical and emotional health (seven items drawn from the HRQOL14 of the Behavior Risk Factor Surveillance System (BRFSS; Centers for Disease Control, 1997
Secondary conditions (thirteen items taken from the Secondary Condition Surveillance Instrument (Seekins, Smith, McCleary, & Walsh, 1990; SCSI)
Sociodemographic items including age, gender, ethnicity and income
Methods
246 people participated in 34 offerings of Living Well over two years in Centers for Independent Living in eight states.
Experimental design: participants were randomly assigned to experimental (127 participants who began the program immediately) or control group (119 participants who began the program two months later)
Pre-Post longitudinal administration
We employed two analytic strategies:
1. Logistic regression between subjects design2. Longitudinal repeated measures within
participants design
Ravesloot, C., Seekins, T., Cahill, T., Lindgren, S., Nary, N.E., White, G. (In press). Health Promotion for People with Disabilities: Development and Evaluation of the Living Well with a Disability Program. Health Education Research.
Ravesloot, C., Seekins, T. & White, G. (2005). Living Well with a Disability health promotion intervention: Improved health status for consumers and lower costs for healthcare policy makers. Rehabilitation Psychology, 50, 239-245.
Findings
Average age was 45 years (SD = 13.4) 82.4% Caucasian; 13.8% African American 64.2% female 13.7 years of education (SD = 3.3) 83.8% unemployed Lived 17.5 years with a disability (SD = 15.7)
Between Participants’ Results
Post-test Secondary Conditions Ratings Below the Median
OR (95 CI)
Unadjusted TX 2.07 (1.18, 3.63)
CN 1.00
Adjusted for Pre-treatment scores of the dependent variable below the median
TXCN
2.86 ( 1.27, 6.46)
1.00
Adjusted for demographics (age, education, gender, race)
TXCN
3.05 (1.33, 7.01)
1.00
Post-test Unhealthy Days Index Below the Median
OR (95 CI)
Unadjusted TX 1.72 (.98, 3.04)
CN 1.00
Adjusted for Pre-treatment scores of the dependent variable below the median
TXCN
1.79 ( .85, 3.76)
1.00
Adjusted for demographics (age, education, gender, race)
TXCN
1.96 (.91, 4.26)
1.00
Post-test Healthcare Costs 2002 Below the Median
OR (95 CI)
Unadjusted TX 1.53 (.87, 2.70)
CN 1.00
Adjusted for Pre-treatment scores of the dependent variable below the median
TXCN
1.90 ( 1.02, 3.56)
1.00
Adjusted for demographics (age, education, gender, race)
TXCN
1.94 (1.03, 3.67)
1.00
Within Participants’ Results
2.35
2.4
2.45
2.5
2.55
2.6
Pre Post 2 mo. 4 mo. 12 mo.
Time
Hea
lth
Pro
mo
tin
g L
ifes
tyle
In
ven
tory
20
21
22
23
24
25
26
27
28
29
Pre Post 2 mo. 4 mo. 12 mo.
Time
Su
m o
f S
eco
nd
ary
Co
nd
itio
ns
5
6
7
8
9
10
Pre Post 2 mo. 4 mo. 12 mo.
Time
Beh
avio
r R
isk
Fac
tor
Su
rvei
llan
ce S
ymp
tom
Day
s
2.6
2.7
2.82.9
3
3.1
Pre Post 2 mo. 4 mo. 12 mo.
Time
Lif
e S
atis
fact
ion
Limitations The study used a convenience sample of
adults with mobility impairments, most of whom had been receiving services at independent living centers
The study relied on self-report of outcome variables
The control condition used a waitlist strategy rather than comparison to another treatment
Dissemination and TrainingTo date we have trained over 400 facilitators in 30 states.
President Bush named the Living Well program as an exemplary program in the New Freedom Initiative.
Senator Harkin has included the Living Well program in proposed health promotion legislation.
Overview
Established our credibility Built organizational capacity in priority
agencies Supported implementation Studied outreach to our priority
population
Established Credibility
1. Network involvement beyond Living Well
2. Availability of information
• Program descriptions
• Research reports
3. Alternative Formats (ie large print)
4. Standardized evaluation
Built Organizational Capacity
1. Funding• We have secured program funding• Supported other grant-writing efforts• Establishing regular funding streams
(Medicaid Waiver, Vocational Rehabilitation)
2. Facilitator training• Content and process of facilitation
• Experiential (vs. didactic)1. Creates peer leaders
2. Generates enthusiasm
• Onsite and distance training
• Distance methods1. Virtual slideshow using the internet
2. Teleconference bridge
3. Written materials
4. 8-hours, approx $300 including materials and long distance phone charges
Supported Implementation Contract with CILs for implementation CILs
– Have staff trained
– Recruit participants
– Provide space for meetings
– Assist with access needs Contracts usually around $3000
Community Activated Living Well Procedure for organizing a Living Well
workshop Includes ideas for establishing a local task
force of stakeholders Meeting agendas, timelines, budgets and
support services
http://mtdh.ruralinstitute.umt.edu/Publications/CoalwGuide.pdf
Studied OutreachTwo studies
– Barriers of attending an educational program– Recruitment into an exercise program
Barriers to Participation
Barrier Exer Educ
I get tired easily. 1 1
I have pain when I do too much. 2 2
My disability limits me too much these days.
3 3
The weather is often too bad to get out.
4 7
I will need someone to help me. 12 4
Predicted vs. Experienced Barriers
0
2
4
6
8
10
12
14
Recruit Pre Post
Sum of Barriers
Passive vs. Active Outreach Passive Marketing materials must lead to:
– an understanding and appreciation of the product– an accurate cost-benefit assessment– an appropriate response
Active Marketing can:– build understanding and appreciation– assess potential costs and benefits– follow-up for appropriate response
Active OutreachActive outreach involves talking with people to help them understand the costs and benefits of participation. Useful for partners and end consumers.
Exercise Recruitment Study
0
5
10
15
20
25
30
35
40
Passive Active
Nu
mb
er
recru
ited
Ravesloot, C. (In Press). Changing Stage of Readiness for Physical Activity in Medicaid Beneficiaries with Physical Impairments. Health Promotion Practice.
Target population ready for change?
YESNO
Passive Outreach
Active Outreach
maybe
© Craig Ravesloot
80%20%
Pulling it Together Know the barriers to participation (Cultural,
Rural, etc.) Produce good passive marketing materials
taking into account barriers, perceived costs and perceived benefits.
Use active marketing to increase understanding, decrease perceived barriers and increase perceived benefits of participation.
Concluding Remarks Designed for dissemination using
participatory research methods Disseminated evaluation results in scientific
and general audience publications Supported capacity building with multiple
training formats, information for funding and guidelines for implementation
Trained on effective outreach
To learn more about the Living Well program contact:
Craig Ravesloot, Ph.D. Rural Institute on Disabilities, 52 Corbin Hall, University of Montana, Missoula, MT 59812 Phone: (406) 370-6840
Email: [email protected]
Websites: www.livingwellweb.com
http://rtc.ruralinstitute.umt.edu