Study Title: The Lived Experience of Self-Managing a Chronic Lung Disease

Researcher: Tayte Willows, Master’s Student at the University of Prince Edward Island, Department of Applied Human Sciences

Academic Supervisors: Dr. William Montelpare & Dr. Charlene VanLeeuwen

I am a Masters student at the University of Prince Edward Island. I am interested in understanding what it is like to self-manage a chronic lung disease. Self-management means someone is taking care of an illness on their own. It involves managing symptoms, taking care of social and mental health, and maintaining helpful connections with doctors, nurses, or specialists.

This research is supporting the Revitalize Project. Revitalize is a group of health researchers at UPEI. They are working to improve programming for conditions like chronic lung disease in PEI.

Please consider helping us!

Invitation to Participate

You are invited because you took the Health PEI Pulmonary Rehabilitation program. You completed at least 18 of the 24 sessions. To participate in this study you need to have access to a computer, the internet, and a camera.

What are we asking you to do?

I would like to hear about your experience with self-management through 2 interviews on Zoom. To do this you will receive a private meeting invitation with a unique meeting code.

For your own privacy, I recommend doing the online interview in a room by yourself. I will do the same.

I will ask you about:

  • What it is like to manage your condition
  • How your strategies have changed over time
  • What makes living well easier or more challenging

As part of this research, I would like you to take casual, informal pictures of your life.  These photos will help me to see the world through your eyes. This is a technique called Photovoice. The photos you share with me will also be data in the research study. Photos would be de-identified (i.e. blurred or cropped). If they can’t be de-identified, they won’t be included in the study.

While you may have several photos, I will ask you to choose 4 to 6 photos to share with me. We will talk about these photographs in our 2nd interview.

Participating in this study will take approximately three to four hours over a two-month period. There will be 5 participants in this study.

Both of our interviews will take place online so that you can participate from the comfort of your home. Interviews will be arranged at times that are convenient for both of us.

How will my answers be used?

The interviews will be video-recorded and transcribed. Transcription will be done by myself through I will share a copy of the transcripts by email. I will ask you to read the transcript and send it back to me within two weeks. You may ask to add, remove, or change any information.

All identifying information such as names and locations will be removed from the transcripts and the photographs to protect your privacy.

All the information will be kept on a password protected USB stick. This includes recordings of the Zoom interviews. The USB will be stored in a locked cabinet at UPEI. Following the study, the data will be stored at UPEI for 5 years.

Risks and Benefits

Your decision to participate in this study is your choice and your participation is voluntary.

You may feel uncomfortable talking about some of the topics. You may decide not to answer some questions. You can contact the Island Helpline by calling 1-800-218-2885 if you start to feel overwhelmed by something we discussed. Your conversations with them are confidential.

The interviews will be on Zoom. You will share photos through email. These technologies will transfer your data through US Servers. The US government may access that data under the USA Patriot Act. While this is unlikely, we are required to let you know this possible risk.

The results of this study will help the Revitalize team design a 12-month maintenance program for people who have completed the Pulmonary Rehabilitation Program. Your stories will help them build a stronger program.

At the end of the study, you will receive a summary of the results.

Right to Refuse or Discontinue

You may also decide to stop participating in the research study and ask to have your answers and photos removed and destroyed. It will not affect your healthcare. Nothing bad will happen to you.

Additional Contacts

If you have any questions, you can ask them now or later. You can contact:

  • Tayte Willows, Researcher or (902) 566-0827.

  • Carolyn MacPhail, Manager responsible for the Pulmonary Rehabilitation Program or (902) 368-6721.

  • Health PEI Research Ethics Board, Reviewed this project or (902) 569-0576.

  • UPEI Research Ethics Board, Reviewed this project or (902) 620-5104.

Please complete this form if you are interested in joining this study. By completing and submitting this form, you are agreeing to participate in The Lived Experience of Self-Managing a Chronic Lung Disease.

If you select the option NO for any of the following questions, you will not participate in this study. As a participant in this study, I understand that

  • I will be asked to take photos of my experience.
  • I will provide my own camera for the project, or use my cell phone.
  • I will be video and audio recording during the interview.
  • All identified information about me will be removed from the transcript
  • My de-identified quotations and photos can be used in any publication resulting from this study.

I have read the research information sheet or it was read to me.
I have had the opportunity to ask questions. Any questions I have been asked have been answered to my satisfaction. I consent voluntarily to be a participant in this study.

I understand that I can contact the UPEI Research Ethics Board at (902) 620-5104 or by email at if I have any concerns of the ethical conduct of this study.

I understand that I can contact the Health PEI Ethics Board at (902) 569-0576 or by email at if I have any concerns of the ethical conduct of this study.
I have the freedom to withdraw at any time and/ or not answer any questions.

My information will be kept confidential within the limits of the law, except if there is a risk of harm to myself or to others.

I will be emailed a copy of the signed and dated consent form.
No waiver of rights is sought.

By submitting your answers, you are consenting to participate in this study.