Written by Renee Greene with Sabira Valiani, Jennifer O’Brien, Candacy Abramyk, Eileen Reimche and Christine Patterson
What happens when loved ones are no longer able to visit patients in Intensive Care Units (ICU)? It was a question that ICU physician with the Saskatchewan Health Authority (SHA) Dr. Sabira Valiani quickly came to learn the answers to when, amid the COVID-19 pandemic, hospitals abruptly restricted patient visitation in ICUs. The change was drastic and its impact immediate, prompting her, along with University of Saskatchewan (USask) researcher Dr. Jennifer O’Brien, to initiate a project to further investigate the issues.
“You don’t know something is good until it’s gone,” says Sabira. Pre-COVID, it was normal for clinicians to have families at their patients’ bedside. People were accessible and clinicians could talk to them multiple times a day, if needed. Families were able to stay as long as they wished and ask the questions to which they wanted answers whenever they needed. When COVID-19 hit, visitation shut down, and the contrast was extreme.
Patient Partner Candace Abramyk, who lives with a rare neuromuscular disease, found herself in the hospital for two weeks near the beginning of the pandemic. Accustom as she was to hospital visits, everything was suddenly changed; new policies were in place and there was confusion surrounding who could visit, what personal protective equipment (PPE) was required, and what exceptions could be made regarding visitation and PPE. She found the impact on patient care, communication and general well-being significant and after her pandemic hospital experience, Candace felt compelled to look for solutions. When an opportunity appeared on the Saskatchewan Centre for Patient-Oriented Research’s (SCPOR) Patient & Researcher Connection Site, she jumped at the chance to take part in the patient-oriented research project.
Patient Partner Eileen Reimche, having spent significant time in ICUs with her husband, and recognizing the value visitors bring from her personal experience, also found herself determined to find a way to help improve the situation for other patients and their families and when invited to share her lived experience, was eager to join the team as well.
Together with team members including SCPOR Trainee Dr. Christine Patterson, Intensivist and USask Assistant Professor in the Department of Anesthesia Dr. Joann Kawchu, medical student volunteer Caitlyn Kitts, USask Instructor and ICU Nurse Faith Bae, Qualitive Researcher Dr. Yoland Palmer-Clarke, undergraduate Student Researcher Sana Mohamed, Speech Language Pathologist and Community Researcher Dr. Salima Suleman and ICU Physian and Associate Professor of Critical Care (USask) Dr. Eric Sy, they initiated a nation-wide survey looking at how working conditions were changed based on visitor restrictions. Surveys, built upon one used during the SARS outbreak, were sent to critical care nurses, physicians, respiratory therapists and social workers around the country. Results showed that most hospitals had implemented severe restrictions to visitation, and that was having a significant impact on communication and workload. Staff now had to regularly don and doff PPE throughout their shifts, and communication with family was no longer as simple as walking by the bedside – it now required a phone or video call along with added administrative details. Additionally, qualitative interviews confirmed that staff found it challenging not having family at the bedside.
While keen to understand the results of how practitioners were affected, Candace felt it was essential to understand the impacts of ICU visitor restrictions on patients, as well, and strongly advocated to include them in the study. Soon thereafter, interviews were conducted with families and patients, and those interviews provided a depth to the study that was previously missing. Patient Partners played an important role in analyzing the information collected from the surveys and interviews. Says Candace, “I was involved in the project right from the beginning. I did in-depth work I never thought I’d be able to do.” This included coding and analyzing data using NVivo software and interpreting qualitative data.
Adds Sabira, “When you think of qualitative data, everyone comes with their own frame. I can look at the health care provider data and say, ‘yes, this rings true – this is what I’ve felt and experienced’. And on the other side, because Eileen and Candace had the experience of being patient family and patient partner, they can relate and say ‘here’s something that would be very important to patients and family members’. Their perspectives give that richness to the results that then create a very well-rounded analysis. Without patients and families, you can’t have patient and family-centred care - the results are not useful without the extra frame Candace and Eileen bring to it.”
The team, however, was quick to remind that there are always bumps along the way in research. One such challenge came in their struggle to recruit patients with ICU experiences during visitor restrictions who were willing to share their stories. SCPOR offered support by posting the patient opportunity on the Patient & Researcher Connection Site and having staff distribute the opportunity within their Strategy for Patient-Oriented Research (SPOR) networks across the country. SCPOR also shared the opportunity throughout its communication channels.
The team noted that the interview process was often difficult for patients and their families, who were asked for an hour of their time. Says Sabira, “It was helpful to have honoraria for patient and family participants, which we received through a College of Medicine Research Award Grant to provide funding for recruitment. It’s just so important to honour patients’ time and lived experience. Otherwise, we’re just taking, and I don’t think it’s a fair ask.”
As a SCPOR Trainee Christine, also received SCPOR Trainee Engagement with Patients (STEP) Grants to engage Patient Partners at the outset of the project and to complete knowledge translation activities. Adds Sabira, “I had the opportunity to sit in with one or two meetings between Christine and SCPOR staff, and the encouragement and guidance about new ways of translating knowledge outside of standard publications led us to reach out to the SHA and make connections at a broader policy level – something we may not have thought to do, otherwise.”
The team feels their greatest strength has been the group dynamic they have created, thanks to complimentary skill sets, passion for the topic and mutual respect. They have shared their findings with the SHA Family Presence Expert Panel and this initial project has spurred other projects, including Connect-ICU, which aims to understand how to utilize technology to fill communication needs and build relationships. Says Jennifer, “This project has been such a great example of how to do things right with research. And I say that humbly, because it’s not me responsible for that, but it’s been the team…There’s a lot we’ve done right in terms of picking a relevant problem, an important topic and a team with complimentary skills, having a flat hierarchy, engaging with patient partners to help determine directions and taking it right through to knowledge translation.”
The project has also made important contributions by collecting data that can be used to support future decisions within health organizations, nationwide. Says Eileen, “Should we be in a similar situation in the future, we know that total restrictions of families from patients in the ICU are detrimental. If policy should be changed officially, there is evidence to support that because of our research.”
As the team focuses on translating their learnings from this research, they acknowledge that working together on this important topic has been an overwhelmingly positive experience. From the Patient Partner perspective, Candace states, “What I’ve gone through as a patient and a family member has really been considered,” and Eileen agrees. “We have been treated as equals and with great respect and consideration.”
Jennifer sums up the importance of patient-oriented research stating, “I have a hard time thinking about what kind of research wouldn’t involve patients – that’s kind of the point. They’re the reason that the healthcare system exists!”