Training Workshops To Reduce and Prevent Secondary Conditions for People with Spinal Cord Injuries in Peru

Background

Peru has few economic resources for people with a disability in its country. People with spinal cord injuries and similar physical disabilities lack access to information and skills to help them reduce or prevent secondary conditions that can occur after a disability is acquired.

Purpose and Anticipated Benefits

The training goal was to find what information was needed to help increase the independence and quality of life of people with physical disabilities in Peru.

Who

Glen White, Research and Training Center on Independent Living at the University of Kansas, with the assistance of the Christopher Reeve Paralysis Foundation met with several disability Peruvian organizations (for example, Improdesdi, Fundades, and Ann Sullivan del Peru) to find out what informational needs people with disabilities in Peru had. Total attendance for all workshops as 705; 285 members of the audience used wheelchairs.

When

2003-2005

Method

Using six booklets developed by the Paralyzed Veterans Association and Powerpoint presentations with numerous illustrations, White held five seminars in 2004 and 2005 focused on pressure sores, urinary tract infections, bowel care, sexuality, and depression. His presentations, all made in Lima, were simultaneously translated and appeared on two screens. Because attendance was lower than expected for the first workshop, brochures and posters were distributed to advertise the workshops, and personal visits were made to people with disabilities and rehabilitation centers to inform them of the workshops. Taxi fares also were reimbursed as a workshop attendance incentive. Participants all received an ornate certificate of attendance.

Results

Sexuality workshops were the most in demand by the audience. Pre- and post-test knowledge scores for all workshops showed knowledge gain in each area discussed with the most significant gain in bowel dysfunction understanding. Post-workshop ratings of participants’ satisfaction regarding 28 workshop elements showed no score lower than 4.24 on a one- to five-point rating scale with 5 representing the highest satisfaction.

A byproduct of his presentations was the high incidence of pressure sores White discovered and the lack of protective cushioning to prevent them. “In Peru, they have no money, zip, for pressure cushions. Roho cushions, for example, there cost about $500 and only the very rich can afford them. Hospitals send people home without cushions and no follow-up.

“One lady came to our seminars who used an alpaca blanket for a cushion. She had three Level 4 pressure sores. We gave her a cushion right away and told her to go to a hospital. She did and basically was sent home without treatment. But at least she has a cushion now that can protect her reasonably well.”

In response, White has been working with several local people to make cushions that will cost about $10. “It’s not a workshop,” he said. “It’s an enterprise. In Peru, when someone gets out of the hospital, the person is given a lapboard and some candy to sell for rehabilitation. That’s not acceptable to me.”

Products

White, G. W., & Gard, M. (2005, March). Bowel dysfunction: What is it and how do we manage it?  Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.

White, G. W., & Zavodny, M. (2004, July). Urinary tract infections: What are they and how can we prevent them? Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.

White, G. W., Von Wolf, M., & Zavodny, M. (2004, July). Pressure sores: What are they and how can we prevent them? Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.

White, G. W. (2004, July). Spinal cord injury and sexuality. Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.

White, G.W. (2005). Using training workshops to reduce and prevent secondary conditions for people with spinal cord injury and other similar physical disabilities in Peru. Lawrence, KS: The Research and Training Center on Independent Living, University of Kansas.

Nary, D.E. (2004). The prevention of secondary conditions in people with disabilities: What have we learned in 10 years. Panelist for symposia at the National Center on Birth Defects and Developmental Disabilities Conference, Washington, DC.

(2005, August). Secondary conditions presentations reveal pressure sore cushion need in Peru. Lawrence, KS: The Research and Training Center on Independent Living, University of Kansas. [press release]

(2006, May 27-June 9). Peruvian Culture and Disability. University of Kansas Study Abroad Program of the Applied Behavioral Science Department. [In this class, participants visit public and private centers, organizations, and schools serving children and adults with disabilities in both Lima and Cusco. In addition, participants visit several universities in Lima to hear presentations by renowned scholars on various aspects of independent living and disability in Peru.]  

Higgins, C. (2005, Spring). Seminars in Peru generate interest among individuals with disabilities. DisAbility Forum Section Newsletter.