Being able to take care of one’s hygiene, cook food and cope independently in the home are examples of feeling in control of one’s life. But how easy is it for an elderly person with a spinal cord injury to feel actively in control of their life in the home? Lizette Norin, occupational therapist and researcher, has written a thesis on the importance of accessibility in the home.
In principle, there is no cure for a spinal cord injury. The person afflicted suffers reduced sensation and muscle function and in most cases becomes dependent on a wheelchair. Returning to an independent life is often a long process and the focus is on learning how to live with the injury. For almost everyone, this means having to live in a home environment that has undergone many adaptive measures and has many technical aids. In Sweden, about 5,000 people have been diagnosed with a spinal cord injury.
How functional is the home of a person who is dependent on a wheelchair because of a spinal cord injury? According to Lizette Norin, it depends on how accessible the home is. Norin has recently completed a PhD on this topic. Her study is based on home visits, interviews and the mapping of physical obstacles in the home of 123 elderly persons who have lived with a spinal cord injury for at least ten years. One of the studies has shown there is a link between accessibility and perceived control over one’s life.
“It has been shown that accessibility is more important for the feeling of being in control of one’s life than whether the person lives alone or together with a partner. That is very interesting, I think, and the question is whether accessibility in the home affects other aspects of health as well,” says Lizette Norin.
The perspective of accessibility
The study shows that it is common for entrances, kitchens and bathrooms to be adapted and yet those are precisely the places where there are many physical obstacles in the homes of people with a spinal cord injury.
“A home has more areas and rooms that are complex from the perspective of accessibility. The fact that the physical obstacles are so extensive and common indicates that the accessibility does not meet the needs of elderly people with a spinal cord injury,” says Lizette Norin.
Lizette is a licenced occupational therapist and she hopes that the results of her thesis will provide new knowledge to the profession of occupational therapy.
“This is a small patient category. During my ten years as a municipal occupational therapist, I met only a handful of people with a spinal cord injury. I want to be able to spread knowledge to occupational therapists about the problems that people with a spinal cord injury usually have in their homes. There is a risk that too much focus is placed on the actual injury and that people forget that it is often the home that causes problems and prevents people from feeling in control of their lives,” says Lizette Norin.
It is common for people with a spinal cord injury and for wheelchair-users to suffer complications which arise as a result of the injury. The patients in the group that Lizette Norin has investigated have lived with their spinal cord injury for ten years.
“Perhaps the aids they were given and the adaptations that were done in their homes straight after the injury did work well initially but maybe they do not provide the same support now. Often the person’s abilities and preconditions have changed,” says Lizette Norin and believes more follow-up measures are needed. She also thinks it would be interesting to work in a more preventive way right from the start when houses are designed.
“Why aren't homes planned and built correctly right from the start? That would be much easier than having to adapt homes at a later stage,” says Lizette Norin.
Defence of thesis
Lizette Norin defended her thesis on 18 January 2019 at the Department of Health Sciences, Lund University. Title of the thesis: Housing accessibility and participation among older adults with long-standing spinal cord injury.
Lizette Norin’s thesis is part of a large project called SASCIS (Swedish Aging with Spinal Cord Injury Study), the first study in northern Europe whose purpose is to increase knowledge about elderly people who have lived with a spinal cord injury for a long time. The project is being conducted by Lund University and Skåne University Hospital.
For more information on spinal cord injuries: https://ryggmärgsskada.se/
In her study, Lizette Norin used the instrument Housing Enabler which has been designed to measure accessibility in homes. In her study, Lizette Norin has established that the instrument needs to be adapted in order to give correct readings for people who use advanced wheelchairs and who live in homes with extensive home adaptations.
Read more about the Housing Enabler in the journal Vetenskap & Hälsa