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Study Information Sheet

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

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


Academic Supervisors: Dr. William Montelpare & Dr. Charlene van Leuween

Background

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 respiratory therapists. This study seeks to understand what it is like to self-manage a chronic lung disease.

Invitation to Participate

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

I would like to hear about your experience with self-management through 2 virtual interviews on Zoom.
You will receive a private meeting invitation with a unique meeting code.
For your own privacy, I recommend taking the virtual interview in a room by yourself.
I will do the same.

I will ask you about:


As part of the PhotoVoice Methodology that I plan to use in this research, I would like YOU to take casual pictures of your life.
Likewise, I will ask you to choose 4 to 6 photos to share with me.
These will be artifacts in the study. It will help me to see the world through your eyes.
We will talk about these photographs in our 2nd interview.

This is a technique called Photovoice. The photos you share with me will also be used as 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. Participating will take approximately three to four hours over a two-month period.

There will be 5 participants in this study.

Gathering Data

Both interviews will take place online and will be video-recorded.
You can participate from the comfort of your home.
Interviews will be arranged for a good time for both of us.
The interviews will be transcribed.
You will be emailed a copy of the transcripts.
You will have two week to review them and request to add, remove, or change the information.
All identifying information is removed from the transcripts and the photographs.
This includes names and locations.
This will protect your confidentiality.
All the information will be kept on a password protected portable storage device -- (a) USB stick) that 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

You may feel uncomfortable talking about some of the topics.
You do not have to answer any questions.
If you start to feel overwhelmed by something you discussed, you can contact the Island Helpline.
Your conversations with them are confidential.

Island Helpline: 1-800-218-2885
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 do not have to take part in this research study. You may stop participating at any time during the study. 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 me, Tayte Willows, the principal investigator on this project. Tayte Willows twillows@upei.ca (902) 566-0827 You can also contact the manager responsible for the Pulmonary Rehabilitation Program. Carolyn MacPhail clmacphail@gov.pe.ca (902) 368-6721 You can also contact the UPEI Ethics Review Board who reviewed this project. 902-620-5104 reb@upei.ca

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