Appendix 1: Full interview

Introduction

• Could you please introduce yourself?

The participant lives in Amsterdam, and he works for vervoersregeling Amsterdam. His parents live in Enschede so he is here every now and then. 

 

• What are your hobbies?

Traveling, architecture (studied), visit old buildings and musea.

 

• How old are you?

He currently is 36 years old. He has been in a wheelchair since age 13, since age 17 he is permanently in a wheelchair.

 

• Do you live with other people?

No

 

• What medical condition do you have?

Hereditary spastic paraplegias (HSP))

In his back on the height of the tailbone there is a problem with his nerves. 

This problem causes the commands from the brain to not pass through the legs. Signals act on their own and give vibrations to his legs. He can still stand up, but his posture is not correct and he can only stand for a maximum for an hour a day.

 

• How long have you had this disorder?

His whole life, it is a genetic condition.

 

• How did you come in contact with the University of Twente to work on this project with us?

Through a friend that knew one of the supervisors of the project.

 

Daily routine

• Could you describe a day in your life?

The participant has a job, so he works everyday from home or sometimes even from the office. Next to that he cooks himself everyday and tries to train his legs by standing up for an hour a day.

 

• Do you work, if so did your work environment have to be modified to suit your needs?

Yes he works at ‘vervoersregeling Amsterdam’, but he does not go there everyday since working online from home is much easier for him. His workspace is not adapted.

 

• Do you do any sports?

He used to play tennis. Would love to do it again but arranging this is very difficult for him since he needs a specific wheelchair for example.

 

Difficulties

• What kind of hardships do you encounter daily?

His legs automatically want to stretch, which starts to become irritating. It makes his legs randomly stretch and causes pressure in his toes.

 

• How do you overcome those hardships?

Stand up, so in other words do what legs try to do, so they become more relaxed. However, this does not actually help him.

 

• How often do you go out?

Every day.

 

• What problems do you encounter when going out of the house?

Needing help when entering buildings. 

 

• How does your condition affect your transportation needs?

For short distances he uses a handbike, and he takes the subway for the rest of the distance.

 

• Are you self-propelling all the time or extra assistance is needed?

When entering buildings he needs assistance. 

 

• How do you deal with the situation, when there are no wheelchair-accessible entrances or elevators? (Need to get to the top floor)

He needs help to do so, can’t carry the wheelchair up, but could walk up stairs with the help of his arms. However, this is very difficult for him.

 

• How does using a wheelchair affect your upper body (shoulder pain,)?

Believes that something like this will happen eventually, but not yet.

 

• How do you deal with obstacles when you are alone? (people, heavy objects)

Ask other people, otherwise he can not do all things. 

 

New questions

• How do you envision this product?

The legs have 3 joints; ankle, knee, hip. The knee is easy to bend. If he tries to stretch his legs, his muscles are too short. Spreading his hips is hard. Especially backward and forward. The position where one leg going forward and one backward is a position he cannot take himself. He would like something that supports one of these positions and one that supports his own weight. The distance between his knees needs to be adapted. 

 

• Would you like to be able to use it yourself or have help?

He would like to use the product at home, where he does not have help.

 

Wheelchair (not that important for design, right?)

• What do you like/dislike about your current wheelchair?

• What would you like to improve on in your wheelchair?

• How much did your wheelchair cost you?

• Is it a rigid or folding wheelchair?

Rigid.

• Are there perks of being in a wheelchair?

 

Expectations

• How often are you able to meet with us?

Once a week

 

• When is a suitable time and where would you like to meet with us?

We meet online most of the time, but also a few times physically on the campus.

 

• What are your expectations from us?

To keep him involved in the process and come up with something that is a set-up for a future idea.

 

• Do you prefer contact over email or whatsapp?

Email for documents, whatsapp for fast questions.