the living well with a disability program: a health promotion and wellness program for adults with...

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


TXCN

1.79 ( .85, 3.76)

1.00


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


TXCN

1.90 ( 1.02, 3.56)

1.00


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


Time

Su

m o

f S

eco

nd

ary

Co

nd

itio

ns

5

6

7

8

9

10


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


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.

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

the living well with a disability program: a health promotion and wellness program for adults with...

Documents