Affordable, accessible housing is a crucial need for many people who have advanced MS. For Malachy Bishop, PhD, CRC (University of Kentucky), who had been funded by the Society’s Health Care Delivery and Policy Research Program to study housing needs, the issue became personal once his father’s mobility was affected by a neurological condition similar to MS. Dr. Bishop’s team’s findings are being featured in a special issue of the Journal of Vocational Rehabilitation (2013;39(2))
How did you come to be interested in doing research specifically about people with MS?
My professional background is in rehabilitation psychology, and I have always been very interested in the ways that people adapt and learn to live and thrive with chronic neurological conditions. I had been researching aspects of living with MS for several years, but after seeing the effect that my father’s increasingly limited mobility had on both my parents, understanding and addressing the specialized housing needs of people with MS became very personally important. Although housing was a new research area for me, I was fortunate to work with my co-investigator, Dr. Kathy Sheppard-Jones, who is a leading researcher in this area.
When you do a survey like this, how do you capture the variety of experiences of people with MS?
Dr. Bishop: This was a critical issue for us on this project, and we tried to make sure we did it in a few ways. First, we actively involved people with MS in the design of the survey. After we developed a draft survey, with the help of housing consultants and MS experts, we traveled around the country to meet with focus groups of diverse people with MS and health care professionals. We would discuss their perspectives, review the survey together, and make sure we were addressing all the issues that were important to them. We revised the survey many times based on their feedback.
Second, we made sure people could complete the survey in different ways, including web-based surveys, mail-in surveys, and by telephone interview. This helped us get information from people in different age groups. Finally, we made sure we surveyed people in every state, so we could explore different regional experiences.
What were some of the more striking findings in the results?
This survey provided a great deal of information that the Society will be able to use to improve the lives of people with MS and their families. Some of the most striking findings were, first, the large number of Americans with MS whose independence is affected by limited mobility. Over 7 out of 10 people reported some degree of mobility limitation that affected their ability to function in their homes and participate in their communities. Also striking was the number of people who live in inaccessible homes. About 1 in 5 Americans with MS said they are limited in their home because it is not accessible.
Another major issue was that although there are many programs and resources available to help people afford making their homes safer and more accessible, most people were unaware of them. This is critical, because over 1 in 4 participants said that their financial situation has prevented them from making needed modifications. Of particular note was the high number of people who said that they need, but do not have, safety features such as grab bars in the bathroom (15.2%), or such basic necessities as an accessible bathroom, an accessible kitchen, or an accessible entrance to their home (about 10% each).
Finally, we found that regardless of the severity of the MS, people whose residence was fully accessible reported a higher quality of life and were more confident that they would be able to live independently in their home in the future.
When do you think people with MS should start thinking about housing?
Based on what we learned, and what we know about MS, we recommend that housing accessibility be a consideration in any long-term housing decision for persons with MS of any age, but this is especially true for people over the age of 50. People over 50 were significantly more likely to report having a mobility limitation, to be limited in their residence, and to say they are not confident that they will be able to continue to live independently in their residence in the near future. Accessible housing for people in or approaching this age group is particularly important as their safety, mobility and independence in and around the home are at greater risk.
Do healthcare providers have a role in bringing up the topic?
Safe and accessible housing is clearly an important health issue for people with MS, but previous research has shown that medical and rehabilitation professionals rarely bring it up with their patients, and generally don’t know much about it. Healthcare providers should absolutely have a more active role in evaluating residential accessibility and safety, and in providing specialized housing resources and information. This is one of the areas we hope to focus on in future research.