Promoting the Cardiovascular Health of People with Disabilities: Research, Programs, and Progress

1
Promoting the Cardiovascular Health of
People with DisabilitiesResearch, Programs, and
Progress

• Dot Nary, MA
• University of Kansas
• Cardiovascular Health Summit
• Missoula, MT
• 4/3/09

2
Disability Definition

• An impairment that substantially limits
  performance in a major life area
• Functional abilities seeing, hearing, speaking,
  lifting/carrying, walking
• Activities of Daily Living (ADLs) bathing,
  dressing, grooming, toileting, getting in/out of
  bed
• Instrumental Activities of Daily Living
• ( ADLs) shopping, cooking, cleaning, paying
  bills

3
Disability Definition

• Ways to acquire disability
• Birth congenital issue (Spina Bifida, MR, CP)
• Traumatic injury (SCI, TBI, stroke, amputation)
• Inherited disease (MS, MD, ALS)
• Onset of other disease or illness (arthritis,
  cancer, lupus, fibromyalgia, diabetes)
• Aging

4
Demographics

• 54.4 million Americans live with a disability
  (19)
• gt half (58) are between 18 and 65 years old
• 46 are employed vs 83 of the general population
  (aged 18-64)
• 27 with severe disability live in poverty, vs
  12 with non-severe disability and 9 with no
  disability
• Brault, 2008

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Definition of Health

• Health is the actualization of inherent and
  acquired human potential through goal-directed
  behavior, competent self-care, and satisfying
  relationships with others while adjustments are
  made as needed to maintain structural integrity
  and harmony with the environment
  (Pender,
  1987)

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Health Continuum

• Travis Ryan, 1988

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Health of People with Disabilities

• Risk for many health problems
• secondary conditions
• chronic conditions
• more days of pain, depression, anxiety, and
  sleeplessness
• national data reveals
• higher obesity rates
• lower physical activity rates
• higher health care expenditures

8
Secondary Conditions

• Definition Conditions to which a person with a
  disabling condition is more susceptible due to
  presence of a primary disability
• Examples burns, contractures, pressure ulcers,
  obesity, deconditioning, urinary tract infections
• May be as or more disabling than the primary
  disability
• High prevalence found in many CDC-funded studies

9
Health Disparities

• Rimmer, J. (2009). Dont die of a broken heart
  this Valentines Day. Retrieved 3/5/09 from
  www.ncpad.org/director/fact_sheet

10
Obesity rates and disability 1998-1999 BRFSS
data from 8 states DC
Credit K. Grobe, Project Workout on Wheels
11
Prevalence of Health Risk Behaviors and
Conditions Related to Heart Disease by
Disability Group ()
Source NCPAD presenting data from Havercamp et
al (2004) except for aBauman WA (2008), Spinal
Cord, 46, 466-76 on Adults with SCI bZigman WB
(2007), Neuroscience Letters, 416, 279-84 on
Adults with Down Syndrome and cFord ES (2003),
Circulation, 107, 2185-9.
12
Direct weight measures of people with disabilities

• 1 published study of 306 Chicago residents with
  various disabilities (Rimmer Wang, 2005)
• Predominantly female (65) and Black (56), with
  some Whites (32) and Hispanics (11)
• Mean age 50 years
• 62 were obese 22 were extremely obese,
  compared to obesity rates of 27 in the national
  samples

13
Disability and Health A Paradigm Shift

• Increased life expectancy
• Concern about high use of health care services
• Recognized risk for preventable, secondary health
  problems
• Increased opportunities for community-based
  activities
• Higher expectations for quality of life

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Barriers to Health Promotion

• In additional to barriers experienced by
  nondisabled people, those with disabilities
  experience other barriers
• EnvironmentalLack of
• Facilities that meet accessibility guidelines
• Affordable transportation
• Knowledgeable professionals
• Financial resources
• Programmatic
• Attitudinal

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Health Initiatives for People with Disabilities
16
Healthy People 2010

• Health goals for the nation
• Increase the quality and years of healthy life
  for all Americans
• Eliminate health disparities
• http//www.healthypeople.gov/

17
Healthy People 2010

• Chapter 6 contains 13 health objectives for
  people with disabilities
• Example 6/10. Increase the proportion of health
  and wellness and treatment programs and
  facilities that provide full access for people
  with disabilities
• Other chapters include objectives related to
  disability
• HP 2020 in planning stage

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International Classification of Functioning,
Disability and Health (ICF)

• World Health Organization's framework for
  measuring health and disability at both the
  individual and population levels.
• Acknowledges that every human being can
  experience a decrement in health and thereby
  experience some degree of disability
• Mainstreams the experience of disability and
  recognizes it as a universal human experience
• Emphasizes functioning and how the environment
  can support it

19
Surgeon Generals Call to Action to Improve the
Health and Wellness of Persons with Disabilities,
2005

• Persons with disabilities must have accessible,
  available, and appropriate health care and
  wellness promotion services. They need to know
  how toand be able toprotect, preserve, and
  improve their health in the same ways as everyone
  else.

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Call to Action Goal 1

• People nationwide understand that persons with
  disabilities can lead long, healthy, productive
  lives

21
Call to Action Goal 2

• Health care providers have the knowledge and
  tools to screen, diagnose, and treat the whole
  person with a disability with dignity

22
Call to Action Goal 3

• Persons with disabilities can promote their own
  good health by developing and maintaining healthy
  lifestyles

23
Call to Action Goal 4

• Accessible health care and support services
  promote independence for persons with disabilities

24
Examples of Health Promotion Programs
25
Living Well with a Disability

• Health promotion intervention program targeting
  people with all types of disabilities
• Based on three social cognitive models of health
• Sense of coherence
• Attribution style
• Hope
• Written at an eighth-grade level
• Developed with people with disabilities using
  Participatory Action Research

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Living Well with a Disability

• Curriculum delivered to groups
• Designed for delivery through ILCs
• 10 chapters
• Goal Setting
• Problem Solving
• Attribution Training
• Depression
• Communication
• Information Seeking
• Nutrition
• Physical Activity
• Advocacy
• Maintenance

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Living Well with a Disability

• Tested across many states and populations
• Outcomes reported include
• Less limitation from secondary conditions
• Fewer unhealthy days
• Less health care utilization
• Currently being tested at an assisted living
  center, with a youth/student population, and in
  an online version

28
Project WOW (Workout on Wheels)NIH grant
R01-HD48628 1/06 -12/10

• Project WOW aims to increase physical activity in
  wheelchair users by helping participants begin
  and maintain over 12 months a regular program of
  aerobic exercise and strength training.

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Project WOW Methods

• Randomized, stratified controlled trial
• Randomized into 2 groups
• Control group (minimal contact)
• Experimental group (intensive support)
• Exercise Approaches
• Exercise at home or in the community
• Encouraged to incrementally increase weekly PA
  over 6 months
• Tailor program to individual needs interests

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Project WOW Outcomes

• Primary
• Physical Activity
• Self report
• exercise logs
• Objective
• ActiGraph

• Secondary
• Physiological
• Aerobic Capacity
• Strength
• Exercise-Related
• Self-Efficacy
• Barriers
• Disability-Related
• Function
• Participation
• Fatigue
• Health Problems

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Resources
32
The University of Montana Rural
InstituteCenter for Excellence in Disability
Education, Research, and Service

• Part of the national network of programs funded
  by the Federal Administration on Developmental
  Disabilities (ADD) committed to increasing and
  supporting the independence, productivity, and
  inclusion of persons with disabilities into the
  community. We provide interdisciplinary
  demonstration, information dissemination,
  leverage of funds, research, service and
  technical assistance and training.
• http//ruralinstitute.umt.edu/

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National Center on Physical Activity and
Disability

• The mission NCPAD is to promote substantial
  health benefits that can be gained from
  participating in regular physical activity
• This site provides information and resources that
  can enable people with disabilities to become as
  physically active as they choose to be
• www.ncpad.org

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Frank Porter Graham Center,University of North
Carolina

• Useful guides to barrier removal for people with
  disabilities in health care settings, and in
  fitness facilities
• http//www.fpg.unc.edu/products/productcatalog.cfm
  

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National Rehabilitation Hospital
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Spina Bifida Association of America
37

• The challengeis to continue the revolution so
  that it truly meets the needs of those at the
  bottom of the disability ladder, not just the
  talented 10.
• Litvak Martin, 2000

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References

• Brault, M. (2008). Americans with Disabilities
  2005. Current Population Reports, P70-117.
  Washington, DC U.S. Department of Commerce,
  Economics and Statistics Administration, U.S.
  Census Bureau.
• Kailes, J.I. (2006). Making preventive health
  care work for you-A resource guide for people
  with physical disabilities. Pomona, CA Western
  University of Health Science, The Center for
  Disability Issues and the Health Professions.
• Pender, N. (1987). Health Promotion Nursing
  Practice (2nd ed.). Norwalk, CT Appleton
  Lange.
• Ravesloot, C., Seekins, T., Cahill, T.,
  Lindgren, S., Nary, D.E., White, G. (2007).
  Health promotion for people with disabilities
  Development and evaluation of the Living Well
  with a Disability program. Health Education
  Research, 22, 522-531.

39
References (cont.)

• Ravesloot, C., Seekins, T., White, G. (2005).
  Living Well with a Disability health promotion
  intervention Improved health status for
  consumers and lower costs for health care
  policymakers. Rehabilitation Psychology, 50,
  239-245. Rimmer, J. (2009). Dont die of a
  broken heart this Valentines Day. Retrieved
  3/5/09 from www.ncpad.org/director/fact_sheet
• Spina Bifida Association of America. (2005).
  Health guide for adults living with spina bifida.
  Washington, DC Author.
• Travis, J.W., and Ryan, R.S. (1988). Wellness
  Workbook. Berkeley, CA. Ten-Speed Press. 

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References (cont.)

• U.S. Department of Health and Human Services.
  (2005). Surgeon Generals Call to Action to
  Improve the Health and Wellness of Persons with
  Disabilities. U.S. Department of Health and Human
  Services, Office of the Surgeon General.
• World Health Organization. International
  Classification of Disability, Functioning and
  Health (ICF). Retrieved 5/15/09 from
  http//www.who.int/classifications/icf/en/
• US. Department of Health and Human Services.
  Healthy People 2010. Retrieved 3/15/09 from
• http//www.healthypeople.gov/default.htm