Focus on Secondary Condition Prevention: The Age of Empowerment: People with Disabilities Decreasing Their Risk of Secondary Condition Development



The Age of Empowerment: People with Disabilities Decreasing Their Risk of Secondary Condition Development


Dorothy E. Nary, M.A., NIH Doctoral Trainee, The University of Kansas Gerontology Center
Dorothy E. Nary, M.A., NIH Doctoral Trainee, The University of Kansas Gerontology Center
This month I interviewed Dot Nary (pictured above), a doctoral student in the Department of Applied Behavioral Science at the University of Kansas. Dot's research interests focus on health promotion and wellness for people with physical disabilities and also on advocacy skills training. As an NIH (National Institutes of Health) Training Fellow, she is employed as a staff member on an intervention to increase physical activity in people who use wheelchairs. Dot spoke with me about ways people with disabilities can empower themselves to improve their health and decrease their risk of developing secondary conditions.

Question: What are some basic things people with disabilities can do to improve their health and decrease their risk of developing secondary conditions?

Response: People with disabilities should take care of themselves in general by getting enough sleep, eating nutritious foods, exercising, and not smoking. The most important thing people with disabilities should do is adopt a different frame of mind regarding taking charge of their own health. Traditionally, we think health care providers are in charge of our health, however, we need to change our thinking and view health care providers as consultants. We need to be in charge of directing our own health care. People with disabilities have the most information and experience about their own bodies and are the most experienced in monitoring whether changes have occurred in their health status that may require medical attention.

In describing her experience with empowerment related to health care, Dot mentioned she has learned over her lifespan that although we are raised to believe that whatever the doctor tells us is always the correct advice, people with disabilities need to be active in informing the doctor about their past health status and how it may have changed throughout their life. Her basic advice is 'You can't just give control of your health to someone else'.

Practical tips:

  • Dot keeps as many of her medical records as she can in a 3-ring binder at home. She maintains copies of records involving past surgeries (types, locations, surgeon names), medications (dosage, prescriptions, length of time she has been taking this medication), bodily changes (weight). In addition to this basic information, she also asks her medical care providers for summaries of her test results, and when she has a new provider she takes the binder with her to those medical appointments. Keeping these detailed records provides several benefits:
    • It empowers her because she is able to refer to past medical records when conveying her health information to the new provider to ensure accuracy of her reports;
    • The provider becomes aware that she has a strong interest in her health. Because our society is so mobile, it may be difficult to keep track of these records unless the consumer takes it upon him or herself to keep track of the records as you move. 'Nobody is going to take our health as seriously as ourselves. Secondary conditions impact our general health.'
  • Have a list of questions when you go into the doctor's office. The more they know about your overall health related to your disability, the more the health care provider can customize their medical advice; poor dental health can have other health implications. It would not hurt to have a comprehensive set of information about your health, including concerns and symptoms that need to be addressed.

    Question: How can people with disabilities best convey to their health care provider what their needs are in terms of warning signs for secondary conditions?

    Response: Dot recommends that as people with disabilities begin to practice record keeping and vigilance in monitoring changes in their bodies, they will begin to build their reputation with health care providers as a reliable reporter, so the provider can know when to take action. For example, when Dot begins to feel signs or symptoms associated with urinary problems, she has developed a reputation with her urologist that allows for a quicker response to the symptoms she is experiencing because she has recognized those symptoms in the past. Dot recommends that people with disabilities learn about the types of secondary conditions they may be at risk of developing and schedule time within a daily routine to check for warning signs associated with certain conditions. For example, she recommends that people who are at high risk for developing pressure sores check the skin on their feet when they are putting on their socks in the morning. Those who are at risk of constipation or diarrhea should keep a food diary so they can track what may be causing bowel problems. People at risk for developing urinary tract infections (UTI) should track their amount of fluid intake which can be a risk factor for UTI development. Dot said that if assuming health care responsibility is difficult due to a stressful situation or to certain types of disabilities, such as intellectual disabilities, recruiting a support person, such as a family member or friend, is a great way to get help but still be empowered. We should always assume that each person is able to participate in his or her own health care decision-making and self-determination to some degree.

    For other articles written by Dot Nary, please click on the following links
    Physical Activity, Mobility Equipment, and Access
    Variety (in Physical Activity) is the Spice of Life!

    Next month, this column will provide resources for monitoring one's health and empowering oneself to improve health by learning basic skills and record keeping techniques.

    Your Feedback is Encouraged

    I encourage you to write to me with suggestions for future column topics or to comment on the information provided in this column. You can reach me by e-mail at jenrow@uic.edu.






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     National Center on Health, Physical Activity, and Disability