Are We Limiting Access to Home Dialysis for Patients with Impairments?
Years ago as a dialysis social worker, I met a young single mother with diabetes. Her kidneys had failed, requiring dialysis—and she had lost her vision. Initially, she did in-center dialysis three times a week, but after learning about and considering the options for home dialysis, she told us she wanted to do PD. She felt she needed to be home more to supervise her young son. She had a lot of confidence in her ability to learn PD, having learned through vocational rehabilitation for the blind to perform all of her other activities of daily living without any help. An aunt lived nearby, but she lived alone with her son and her service dog.
She discussed her desire with our home training nurse, who had no experience training someone who was blind. The nurse reached out and identified a home program that had nurses who had significant experience training blind patients to do PD, learned from them and from the patient who told her, “Tell me what you need me to do and I’ll tell you how to teach me to do it.” The patient used an assist device to make connections for manual exchanges. She successfully performed PD until she received a transplant.
Here’s a Home Dialysis Central article with myths and facts that includes suggestions for patients who are blind and want to do PD: http://www.homedialysis.org/life-at-home/articles/pd-separating-myth-from-fact
Jeannine Farina, MSN, RN, CNN from Baxter had a poster at the 43rd American Nephrology Nurses’ Association Annual Symposium in Orlando in 2012 that included these recommendations for training a patient with visual impairment:
- Increase practice time and extend training time for visually impaired patients.
- Provide handouts in black and white with enlarged type to heighten visibility.
- Enhance contrast between the object and its surroundings—add contrasting tape on the cycler handle to make it more visible (Figure A).
- Use a tape recorder to speak out the procedure for the patient to take home since they may not be able to read the procedure manual/guide.
- Be aware of the lighting in the training room. Open or close curtains or blinds to provide more light and decrease glare.
- Change the work surface to a matte or dull top, such as a tablecloth, as glare can further reduce vision and cause eye fatigue.
- When making connections, use color contrast to enhance differences and depth perception.
- Encourage patients to make the connections vertically in front of them at an angle versus horizontally (or parallel) to their chest. This also helps with depth perception issues.
- Keep your voice at a normal level unless the visually impaired patient also has a hearing impairment.
- Include family and friend involvement to increase success of performing PD at home.
- Obtain talking blood glucose monitor, blood pressure monitor, watch, and weight scale.
- Instruct patient to call PD nurse for any development of abdominal pain since unable to evaluate effluent.
- Lighthouse for the Blind has services and special aids for people who are visually impaired: 1-800-829-0500 or www.lighthouse.org.
- Shoplowvision.com: variety of aids including different types of magnifying devices.
- National Federation for the Blind: aids, assistive devices, diabetes articles and books in Braille at www.nfb.org.
- A hands-free magnifier with a battery operated light can help when making connections (Figure B). Available at most craft stores. i
Recently a social worker posted a message to the Council of Nephrology Social Workers listserv asking if anyone knew of any assist device that could help two of her patients who could be good PD candidates to perform dialysis using a PD cycler in spite of being deaf. She said that the home training nurse had checked with a cycler manufacturer and was told that there was no modification for the machine that would allow someone who is deaf to know when there’s an alarm. Luckily, the social worker didn’t accept that answer! Another social worker said she has a patient who is deaf and has done PD for almost 2 years using a noise activated device that vibrates when the machine alarms. Multiple devices that recognize noises and flash lights or vibrate beds are available through companies that sell assistive devices. Ms. Farina’s poster listed www.hearmore.com for sound activated devices for PD cyclers.
If we say we’re assessing each patient’s candidacy for home dialysis, we need to stop setting limits on patients who may learn a little differently or may take a little more effort. Dialysis staff and manufacturers of home dialysis equipment and supplies may want to consult with agencies and organizations that work with people who have different kinds of impairments to learn what assistive devices are available that could help more patients do dialysis safely at home.
- Listing of state services for people who are deaf/hard of hearing that may be able to offer advice about products and provide financial help to pay for an assistive device: http://www.gallaudet.edu/clerc_center/information_and_resources/info_to_go/resources/statewide_services.html
- AbleData has a database of products for who are blind or deaf/hard of hearing and those who need a device to do activities of daily living, access education, improve their environment, work, and more: http://www.abledata.com/abledata.cfm?pageid=19327&ksectionid=19327
i Farina J. How to Successfully Train the Physically Impaired Patient to Perform Peritoneal Dialysis (poster), 43rd ANNA Annual Symposium, 2012 http://www.annanurse.org/download/reference/meetings/symposium/posters12/farina.ppt (accessed July 29, 2014)