Use a Manual Wheelchair and Interested in Participating in Research?

 

Why are we doing this study?

Being part of one’s community is important for health and quality of life. Manual wheelchairs help adults with mobility challenges move about their community. However, the environment often poses barriers and burden (the cumulative effects of environmental factors) to mobility in the community for manual wheelchair users. Together, barriers and burden can make destinations disconnected and unreachable if they exceed the capacities and resources of the individual. Current knowledge is limited on the perspectives and abilities of manual wheelchair users in the community. The aim of this study is to learn more about community navigation from the perspective of different manual wheelchair users.

 

What is involved?

  • Travel a set route around GF Strong Rehab Centre in your manual wheelchair
  • Participate in a walk-along interview during travel
  • Wear a GoPro camera

 

Who can participate in this study?

You are being invited to take part in this research study because you:

1) Use a manual wheelchair

2) Live in Vancouver

3) Are able to communicate in English

4) Able to provide own consent

5) Are 19 years of age or older

 

Who can you contact if you have questions about or are interested in the study?

If you have any questions or need further information about this study, you may contact the principal investigator, Dr. Ben Mortenson, at 604-714-4109, or email activemobilityforall@gmail.com. Please leave a voicemail referring to this study.

 

 Your Participation is Voluntary:

  • Your participation is voluntary. It is up to you to decide whether or not to take part in this study.
  • If you wish to participate, you will be asked to sign this form. If you decide to take part in this study, you are still free to withdraw at any time and without giving any reason.
  • If you do not wish to participate, you will not lose the benefit of any medical care to which you are entitled or are presently receiving.

 

What will happen during the study?

All participants will complete standardized questionnaires that ask about demographic information, the type of manual wheelchair you use, and confidence using your manual wheelchair. These will be completed online via a UBC survey tool (called Fluid Surveys). If you do not have access to the internet, the questionnaires can be mailed to you along with a stamped, self-addressed return envelope. Participation in this study will take about 1.5 hours.

 

Phase 1: Walk-Along Interview

Starting at GF Strong Rehabilitation Centre, you will complete a route composed of 3 segments, each between 450 and 550 metres. You will move through the segments at your own speed, negotiating various environmental factors like sidewalk curb cuts, slope, and different surface types. A researcher will be moving alongside you, asking interview questions to collect your thoughts in real time. Video footage and audio will be recorded using a GoPro camera fixed to the top of your head. There will also be another camera to record video footage from a different angle, which will give a better view of the course and environmental factors. Additional questions will be asked at the end of each segment, including questions about your physical and mental fatigue.

 

Phase 2: GIS Mapping

For your chosen route, there will be environmental factors that affect your ability to travel. We will map and measure specific features that you come across.

 

How will the study results be shared?

Study results will be presented in scientific reports, publications, and/or presentations. At the end of the project, the researchers will provide a brief written summary of the results to study participants who are interested. Ultimately, we would like to use the data to inform a person-specific mobility application that would consider both the person, their device, and his or her environment.

 

What are the risks and benefits of participating in this study?

Potential Risks

The risks involved in taking part in this study are minimal. You will be reminded at the start of the session that you can decline to respond to any or all questions if you wish or discontinue the study. The route involves crossing a main road at two different light-controlled intersections, as well as shallow inclines and declines. You can ask for assistance to negotiate any barriers while travelling the community route. You can withdraw from the study at any time. To try and maintain confidentiality we will use pseudonyms in any written publications. However, there is potential that someone may guess your identity or you may choose to identify yourself by including yourself in the video.

Potential Benefits

By participating in this study, you will be providing information to the researchers about the barriers and burden faced by people who regularly travel in manual wheelchairs. The data that are collected during this study will help inform common rules of thumb that may be affecting other manual wheelchair users and provide information for future studies that will strive to make the community more accessible for people using manual wheelchairs.

 

How will confidentiality be maintained?

All information that we collect from you will be kept confidential.  All documents and audio or video files will be encrypted and password protected. Hard copies will be kept in a locked filing cabinet in the research lab. The online survey responses collected and stored using Fluid Designs survey software will be accessible by research personnel only. The responses to each survey will be coded and stored on an Excel spreadsheet that will be encrypted by the research staff. Information that reveals your identity will not be released or published without your consent.  The investigators and research assistants will be the only people who have access to this information. Records that identify you by name or initials will not leave the investigators’ offices.

 

The information collected from you, including direct quotes, may be used in scientific reports, publications and/or presentations, but neither your name nor other potential identifying descriptions will be used. Your rights to privacy are legally protected by federal and provincial laws that require safeguards to insure that your privacy is respected. Further details about these laws are available on request. Signing this consent form in no way limits your legal rights against the investigators or anyone else, and you do not release the study investigators or participating institutions from their legal and professional responsibilities.

 

Are study participants paid to participate in this study?

Your participation is voluntary and will not be provided with monetary reimbursement.

 

Who can you contact if you have complaints or concerns about the study?

If you have any concerns or complaints about your rights as a research subject and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Services at 604-822-8598 or, if long distance, e-mail RSIL@ors.ubc.ca or call toll free 1-877-822-8598.

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