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Introduction
The following recipient of care stories are from round 1 co-design of the IUI Project. These and other stories (some stories are not approved for publishing by their authors) informed Guide for Reducing Barriers to Virtual Healthcare (draft version date: June 2021).
Participants were asked to share stories about healthcare experiences and reflect on specific questions about challenges / barriers, solutions, and approaches in a supplied WORKBOOK. The Workbook included the following storytelling direction: The project is interested in healthcare experiences, and not your storytelling skills. You have freedom in how you express your story. You can create the story from your perspective, or you can create different characters and names to tell the story — you choose how you want to express the experience. You can write it, draw it, audio record it, video record it, or a combination of these ways. You can express your story in any language you are comfortable with.
Story 1: Grace
Three years ago, my daughter went her first time skiing and she learned to ski quickly. However, she fell down a hill and broke her leg. We went to the ER in the sick kids hospital. She was 6 years old at the time and I was very concerned that she was too young and it was the first big accident for her. However, we waited a long time in the ER. Fortunately, the doctors and nurses from the hospital were doing their professional role well. She took the X-ray and we found out what's wrong with her leg. She had her leg broken. She got a cast on her leg about two month. We could see the process every time she took the X-ray and her leg was getting better. My daughter received not only professional medical treatment but also positive psychological treatment. Now, she is enjoying skiing every winter without the trauma of her broken leg. I was very relieved and thankful.
Q&A
Question: Using your story from Activity 2 make a list of the challenges and barriers that made it difficult to get the healthcare that was needed or wanted. Challenges and barriers are something that prevented or made it difficult to get healthcare.
Response: Just one thing was not satisfied that the waiting time was too long.
Question: Think of ways the challenges and barriers could be solved. What would make the experience work better for you? This can be a piece of technology, another person, a way of doing something or an approach.
Response: We can solve the problem if we have more doctors, nurses and medical devices.
Question: What made getting healthcare better or a good experience? List the things that happened that made getting healthcare better.
Response: The doctors and nurses from the Kids hospital were doing their professional role well.
The receptionist from the Virtual Walk- in Clinic was very nice and did her job well.
Story 2: anonymous
The following story has been translated into English:
My birth experience in Toronto, when I was about to give birth, I came to the hospital and the medical staff were very friendly. Although giving birth to a baby for the first time made me very nervous and scared, the friendliness and professionalism of the medical staff made me feel a lot relaxed. Even, the nurse felt that my pain was a little unbearable, and also gave me an analgesic injection that had no effect on the baby. Later, when I started giving birth, because it was New Year's Day, there might be fewer doctors on duty, so when I needed assistance in giving birth, I waited for a long time for doctors and suffered some pain. But these experiences are still very understandable and beautiful to me. But next I want to talk about my relatively unhappy experience. When I arrived in the delivery room after giving birth, Nurse A was very nice and helped my baby take a bath and told me how to better take care of the newborn child. Something should be prepared. When my husband came to accompany me, because my husband had to go to work the next day. Originally planned to live in a single room in the hospital, my husband can have a place to rest and sleep. But because there are many women in hospitals. There is no single room for pregnant women, so I choose to live in a double room. In the double room that day, the mother did not live in another bed, so Nurse A took a sheet and spread it on the other bed for my husband to sleep for a while, so that I could take care of me and the baby. But when I switched to Nurse B at night, my pain began. When the nurse B came, he woke up my husband and said that this bed can only sleep women, and men cannot sleep. I was accused by her. At that moment, I collapsed, but I didn't say anything because I was afraid of causing trouble to the kind nurse B. In addition, because I just gave birth to the baby without milk, I did not prepare water milk. I thought the hospital would provide it, but this nurse B was very busy. Because I am a new immigrant, my husband and I are the only ones who take care of the baby. My husband has to go to work during the day, and I am the only one to take care of the baby. This nurse B wanted me to try breastfeeding, so she kept stressing me to feed the baby, and then when I asked her for water, she was very reluctant and not good, and she felt that she spoke quickly to me. It may be inevitable that some people are in a bad mood or have a bad attitude. I won't mind it very much. However, this nurse B, when I had just given birth to my baby, I was emotionally nervous, scared, and physically suffering. Treating a patient with such an unfriendly attitude impressed me deeply. Even when writing this article, recalling her attitude towards me at that time made me feel an urge to cry.
Q&A
Question: Using your story from Activity 2 make a list of the challenges and barriers that made it difficult to get the healthcare that was needed or wanted. Challenges and barriers are something that prevented or made it difficult to get healthcare.
Response:
1: There are some barriers to communication
2: There is no bed for the escort [escort: likely refers to husband who accompanied participant]
Question: Think of ways the challenges and barriers could be solved. What would make the experience work better for you? This can be a piece of technology, another person, a way of doing something or an approach.
Response:
1: If there is a nurse who can speak Chinese, my mother tongue, it may be better to communicate.
2: Nurses are more sympathetic, and patients in the hospital may be more psychologically vulnerable than usual
Question: What made getting healthcare better or a good experience? List the things that happened that made getting healthcare better.
Response: The patience and compassion of the medical staff to the patient, try to help the patient alleviate the pain and solve the problem. Give the patient more smile and comfort, instead of letting the patient feel disgusted and disgusted
Story 3: Gerry Richard
Probably the experience that had the most impact on me is the third one I listed with my eye doctor/surgeon. It all began while I was attending some computer training at the local office of the CNIB. I had a visual assessment scheduled which was designed to get you an eye exam and then see what aids may be of use to you to assist in your daily life. During the eye exam the examiner asked me when I last saw my eye doctor, to which I said a few years ago. Then she informed me that I had developed cataracts in both eyes. All I could think is that cataracts was for old people. I will admit it was disheartening, but I knew I couldn’t let it slow me down. The next challenge in my life was about to begin.
I had to now find a doctor that would be willing to operate to remove the cataracts. This turned out to be more of a challenge than I thought it would be. This was because my eye condition meant that I had smaller eyes as they did not develop completely. The first two doctors I sa basically said there was nothing they could do for me and that I would have to just live with the cataracts. That was not good enough for me, so I tried again. In speaking with a friend, he mentioned the doctor he had found that might be willing to help me. I figured it was worth a try, so I got the referral from my family doctor and waited for the appointment.
When I did see this third doctor, I was not seeing much of anything out of my left eye, and was also having some discomfort in the eye. After the examination the doctor said that he could not see anything that would be causing the discomfort, determining that it was probably internal. We decided to try some antibiotics to see if it may help. The other option was that the eye may be shutting down. On the other hand he would be willing to perform the cataract surgery. He did tell me however that with my pre existing eye condition that I may lose the vision, even though not very much, I have. So I arranged to go back in a month or so to see if anything had changed.
When I went back to the eye doctor a month later, nothing had changed. So I had to make the decision, do I leave the eye in, or have it removed. The benefit of removing the eye could extend the life of the right eye. So I decided at that appointment to have my left eye removed. I felt comfortable in making this decision as the doctor di a very good job in explaining to me all my options and their outcomes. Of course I was nervous and even a bit scared. But at this time I knew I would still have some usable vision with my right eye.
The day for surgery came, and when I got to the hospital, the staff were all very helpful in making sure I was comfortable, even though I was very nervous. Everyone was great in explaining what they were doing, and what was going to happen. I knew that I had made the right decision, but was still full of butterflies. After the surgery I was taken up to a room where again the staff took good care of me. The butterflies finally got the better of me but I could not reach the garbage can as the bed rails were up. I pushed the call button, but he nurse wasn’t quick enough and I got the floor. All the nurse said when she looked into the room is that I wasn’t getting supper. I agreed that that was probably a good idea.
I went home in a couple days, and recovered for about six weeks at which time I was fitted for a prostetic eye. This eye was going to look very real, and it was best so that I did not just have an empty eye socket. This whole process was positive.
It was about three years later when I went through the entire situation again with my right eye. Again it was a positive experience. The difference this time is that I was going to have no vision, not even light perception.
Q&A
Question: Using your story from Activity 2 make a list of the challenges and barriers that made it difficult to get the healthcare that was needed or wanted. Challenges and barriers are something that prevented or made it difficult to get healthcare.
Response: I think the main challenge was finding the right doctor that would be willing to perform the cataracts surgery and also clearly explain the challenges and possible outcomes. I think another challenge is finding a eye doctor after aging out of the pedeatric system.
Question: Think of ways the challenges and barriers could be solved. What would make the experience work better for you? This can be a piece of technology, another person, a way of doing something or an approach.
Response: The challenge of finding an eye doctor after aging out of the pediatric system could be resolved by providing a referral to an eye doctor so that regular appointments could be continued.
As for finding a specialist, keeping lines of communications with organizations such as CNIB and individuals that may have similar circumstances open can be helpful.
Question: What made getting healthcare better or a good experience? List the things that happened that made getting healthcare better.
Response:
Finding a doctor that clearly explained to me what all my options were and what the outcomes would be.
Also I found having a network of other visually impaired individuals helpful as we could share information.
Story 4: anonymous
I am a newcomer in Canada. I arrived here few months ago when corona cases at the peak. So, at those times, I was really nervous and worried because I don’t know about the Canadian health care system and the way of treatment. I am originally from India where we have universal health care system. In India, we are getting adequate treatment and care even though there are few limitations. But when I reached here, the experiences are really overwhelming and would like to thank every staff members for the excellent service.
I was in India when the pandemic hit the whole world around starting of 2020 with an approved COPR (Confirmation of PR) which is the final stage of reaching the land of opportunities, Canada. My husband was working as a Superintend for a newly built condominium in Scarborough, Ontario at that time. I still remember, he was worried about the increasing Covid 19 cases in the building. He said that, the cases are increasing alarmingly every day. He already knew few positive cases in the building that are in isolation. At the same time I had my COPR with a Canadian visa on my passport which will be ending in few months. The only possible option will be reaching Canada before the expiration of the Canadian Visa stamped in the passport. So I decided to book a flight ticket to Toronto on July 2020.I reached here in Toronto on July 16. I was very excited and worried at the same time. This pandemic has made a lot changes to our daily life or we can call it as the “new normal”. It took another two weeks of time for us to join together because I was in quarantine for 14 days of period after landing.
Things were not moving smoothly after that as we expected. I was deeply concerned when one of the residents of the condominium where my husband work as Superintend passed away due to Covid 19. And the most unfortunate part is my husband had a close contact with him when he arrived the building after a Cruise ship tour from Miami. Things were getting worse after that. Moreover my husband showed some symptoms of Coughing and Fever. I felt very helpless and alone. My husband informed his company about the situation and we both went to isolation for 14 days. Then I called the City of Toronto help line for Covid related enquires. Their responses were very helpful and informative. They recommended conducting a Covid 19 test. So we booked an appointment in the next available day.
We are so tensed when we entered the Covid 19 testing center. But the friendly approach by the health care staff members helped us to feel better. Not only the careful behaviour but also the systematic approach made us to feel conformable during the hard times. Being a newcomer to this country, all the situations and healthcare environment were complete new to me but the dedicated health care workers made us to feel comfortable in the fight against the global pandemic.
Q&A
Question: Using your story from Activity 2 make a list of the challenges and barriers that made it difficult to get the healthcare that was needed or wanted. Challenges and barriers are something that prevented or made it difficult to get healthcare.
Response: The only challenge that we faced during this hard time with Covid is the wait time to get tested and get an appointment with the doctor.
Question: Think of ways the challenges and barriers could be solved. What would make the experience work better for you? This can be a piece of technology, another person, a way of doing something or an approach.
Response: I think adding more health care units and the more staffs will be right solution to solve this problem
Question: What made getting healthcare better or a good experience? List the things that happened that made getting healthcare better.
Response: The good healthcare system in Canada and the free services provided.
Story 5: Mridula Binte Zakir
The cornea cut was a horrible experience in my life. This happened while I lived in Vancouver, BC. I have been wearing glasses for a long time and these glasses always protected my eyes from dust. It was really unfortunate that somehow I had dust in my eyes and constant rubbing may have caused this cornea cut. It was a very windy day as well. I never thought that rubbing my eyes could cause this much damage to my eye.
I was on my way to work and this happened. Initially my eye was irritated and I wasn’t sure what it was. I used eye drops a few times thinking that it would get better. Three hours passed and my condition didn’t get better. I constantly had tears in my eyes and after three hours I just couldn’t open my left eye and lights around my work bothered me a lot. At this point I had to inform my manager about my condition and had to leave work immediately to go see my family doctor.
I rushed to see the doctor and he quickly checked my eyes. Seeing the severity of the condition he gave me a note and instructed me to go to the hospital emergency. I took a taxi to go to the hospital. This entire time I didn’t have any one with me as my husband was in Toronto and my in-laws were at work. My experience was even worse when I arrived at the hospital as I had to wait 4 hours just to see a doctor. A doctor finally took a look at my eye. The doctor herself was very unprofessional as she tried to see me in a hurry. She wanted to check my eye using a machine and kept on telling me to open my eyes wide enough for her to see. I knew she was trying to help me but I just couldn’t open my eye wide enough for her and there was a light coming straight towards my eyes, which made opening my eyes even harder.
She told me to cooperate with her but I had a serious struggle opening my eyes. After a few tries I forced myself to open my affected eye so the doctor can take a look. She put a drop in my left eye to ease the pain temporarily and referred me to an eye specialist in 2 days. I went to see the specialist and my experience there was really amazing as the doctor and her team really took their time to see me. They cared a lot and were sympathetic towards me as I struggled with the pain. I was given a new eye to use for the next week and instructed to come see her again next week for follow up.
This was a good learning experience for me as a newcomer. I have dealt with the situation on my own and despite having language trouble I was able to communicate with everyone involved. I feel that this experience made me stronger and confident. I feel like I can tackle these types of situations in the future.
Q&A
Question: Using your story from Activity 2 make a list of the challenges and barriers that made it difficult to get the healthcare that was needed or wanted. Challenges and barriers are something that prevented or made it difficult to get healthcare.
Response:
I had the following challenges and barriers.
- language for a newcomer is a tough situation and a new city
- Opening eyes while there were plenty of light around
- Not having my family members with me
- The extreme long wait at the hospital
- The doctors hurriness and impatience in seeing me
Question: Think of ways the challenges and barriers could be solved. What would make the experience work better for you? This can be a piece of technology, another person, a way of doing something or an approach.
Response: A shorter wait time at the hospital would have made this experience better for me. I also wish that the doctor who saw me was a bit more patient as I could not follow her instruction due to my eye condition.
Question: What made getting healthcare better or a good experience? List the things that happened that made getting healthcare better.
Response:
I had a good experience when I saw an eye specialist.
She and her team really took care of me and provided support.
The best part was that I didn’t have to pay anything