In May of 2020, Laura Sinko a mental health nurse and PhD researcher at University of Pennsylvania, reached out to Patients Rising. Sinko and her colleagues were conducting a photography study to amplify the lived experiences of people who are immunocompromised during COVID-19 pandemic lockdowns. They asked us to help extend the study to our audience.
Why was this study important?
Participation in studies is something Patients Rising encourages. Projects that better understand patients and what they are experiencing, helps make healthcare better. We eagerly joined forces with UPenn to circulate the opportunity.
Having a compromised immune system has always been a cause for concern. During the early lockdowns of the Covid-19 pandemic, it was worse. How Covid-19 would impact society as a whole was unknown, and less-so the most vulnerable among us. Getting involved in this photography study seemed a meaningful way to explore the feelings in that unique moment in time.
WHAT DID PARTICIPANTS DO?
Participants uploaded and told the stories behind their photographs prior to responding to five general reflection questions and COVID-related items. The purpose was to learn more about the wellness and distress experiences of individuals who were at high risk for COVID disease transmission, while also learning how we can better support these individuals going forward.
WHAT WERE THE FINDINGS?
As patients shared their experiences, the researchers looked closely at the insights they revealed. Findings were shared in an online exhibition. The exhibition was broken up into several galleries, each focused on different themes. In each gallery are photos with captions from the participants.
- Finding Comfort and Managing Uncertainty
- Building Emotional Resilience
- Finding Escape
- Maintaining Connection
- Supply Management
- Changes in Routine
- Prioritizing Wellness
- Safety, Fears, and the Need for Caution
- Challenging Feelings & Mental Health Concerns
- Isolation and Longing
The researchers also published their findings in the Journal of Community Psychology: “Capturing lifestyle changes and emotional experiences while having a compromised immune system during the COVID-19 pandemic: A photo-elicitation study”.
“Overall, this study offers insight into what it was like, at the beginning of the COVID-19 pandemic, for those with compromised immune systems as they navigated their health along with conditions of uncertainty caused by lack of information about this novel virus, no clear sense of when circumstances would change, and the urgent upheaval of many aspects of social life. Through sharing of images and experiences, participants expressed that despite the fear surrounding one’s health status, they creatively engaged in ways that allowed them to seek comfort and pockets of escape to manage uncertainty amid their socially isolated lives. Participants also made efforts to reconnect with things that brought meaning in their lives, while safely maintaining social and familial connections.”
– Sinko, et al
UNDERSTANDING LIFE WITH CHRONIC ILLNESS
Projects like this are a vital part of understanding a significant part of our society – people whose age or disability leaves their immune system compromised. It is likely that Covid-19 will go from pandemic to endemic, meaning we will live with its existence much like influenza. But that may not be the case for those who are the most vulnerable among us.
According to Eleanor Murray, an assistant professor of epidemiology from Boston University, in order to move from pandemic to endemic the world needs “to have some predictable sense of where that disease is going to go next.” As long as the behavior of Covid-19 remains uncertain, the immunocompromised will have to remain vigilant. Something they were accustomed to before Covid-19.
Citation
Sinko, L., Rajabi, S., Sinko, A., & Merchant, R. (2022). Capturing lifestyle changes and emotional experiences while having a compromised immune system during the COVID-19 pandemic: A photo-elicitation study. Journal of Community Psychology, 1– 20. https://doi.org/10.1002/jcop.22784
As the Director of Patient Outreach at Patients Rising, Jim works very closely with the people to help them tell their stories. Jim is a Columbia University trained writing consultant and has worked closely with writers of all levels of skill to help them find and refine their voices. He is a writer, editor, author and certified medical assistant with over 20 years of experience in healthcare. Jim has spent over two decades in clinical care and research at some of New York’s biggest health institutions doing hands-on patient care, education and advocacy for rare disease patients. He has worked with several non-profit patient support organizations doing outreach, advocacy and creating educational content. Twitter Linkedin
