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
Developing a National
Evaluation Strategy
 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.
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 design
2. 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
TX 2.86
( 1.27, 6.46)
Adjusted for Pre-treatment
scores of the dependent
CN
1.00
variable below the median
TX
3.05
(1.33, 7.01)
Adjusted for demographics
(age, education, gender, race)
CN
1.00
Post-test Unhealthy Days Index
Below the Median
OR
Unadjusted
TX
1.72
CN
TX
1.79
Adjusted for Pre-treatment
scores of the dependent
CN
variable below the median
TX
1.96
Adjusted for demographics
(age, education, gender, race)
CN
(95 CI)
(.98, 3.04)
1.00
( .85, 3.76)
1.00
(.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
TX 1.90
( 1.02, 3.56)
Adjusted for Pre-treatment
scores of the dependent
CN
1.00
variable below the median
TX
1.94
(1.03, 3.67)
Adjusted for demographics
(age, education, gender, race)
CN
1.00
Within Participants’ Results
Health Promoting Lifestyle
Inventory
2.6
2.55
2.5
2.45
2.4
2.35
Pre
Post
2 mo.
Time
4 mo. 12 mo.
Sum of Secondary Conditions
29
28
27
26
25
24
23
22
21
20
Pre
Post
2 mo.
Time
4 mo.
12 mo.
Behavior Risk Factor
Surveillance Symptom Days
10
9
8
7
6
5
Pre
Post
2 mo.
Time
4 mo.
12 mo.
Life Satisfaction
3.1
3
2.9
2.8
2.7
2.6
Pre
Post
2 mo.
Time
4 mo.
12 mo.
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 Training
To 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 methods
1.
2.
3.
4.
Virtual slideshow using the internet
Teleconference bridge
Written materials
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 Outreach
Two 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.
The weather is often too bad to
get out.
I will need someone to help me.
3
3
4
7
12
4
Predicted vs. Experienced Barriers
14
12
10
Sum of 8
Barriers 6
4
2
0
Recruit
Pre
Post
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 Outreach
Active outreach
involves talking with
people to help them
understand the
costs and benefits of
participation. Useful
for partners and end
consumers.
Exercise Recruitment Study
40
Number recruited
35
30
25
20
15
10
5
0
Passive
Active
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?
NO
maybe
20%
YES
80%
Passive Outreach
Active Outreach
© Craig Ravesloot
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: cravesloot@comcast.net
Websites: www.livingwellweb.com
http://rtc.ruralinstitute.umt.edu