Protecting patients through isolation? Seeking ways to avoid the devastating effects of exclusion of family and friends in the era of Covid19

by Hege Gravdahl Garelius

The MethodSpace focus for October 2020 was on Action Research. Our Mentors-in-Residence this month were Ernie Stringer and Alfredo Ortiz Aragon, co-authors of a new edition of the text Action Research. They invited chapter authors and colleagues to contribute to this rich series of posts.

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I am a senior physician working in a Hematology department at the Sahlgrenska University Hospital in Gothenburg, Sweden. When the Covid pandemic became a fact in March 2020, our hospital closed the doors to visiting friends and family members of all, not only Covid patients. We could not risk that a person outside the hospital might be Covid19-positive and bring the disease to our immunosuppressed patients. From March 12th and forward, all patients who are admitted to the hospital are required to be tested for Covid19 in the ER before being allowed into our in-patient unit. No relatives were/are allowed. All patients were quarantined in the hospital and in the best of cases accompanied by their smartphones or their iPads so they could communicate with the outside world. Not only did they have a scary disease, they were isolated from the safety of family and friends. Only patients in a very serious condition or dying were/are allowed visitors, and only then with a negative Covid19-test less than 72 hours from the visit.

Figure 1: Gatekeeper on 5th floor of the Hospital

One patient, a now-recovered 60-year-old man, told me in retrospect that he could hardly remember anything from the first month he spent in hospital this spring. I remember that he was very ill, and that it was difficult to assess his mental status. He was so ill that he was moved to the ICU to get monitored and possibly be put on a ventilator. I had several phone calls / FaceTime’s with his relatives, and they were very understanding for our strict “no visitors” rules. The patient remembered one thing, though. Somebody smuggled his wife into the ICU so that she could sit by the bed and hold his hand for some hours. The patient told me that those hours holding her hand made his breathing improve so that he could avoid the ventilator.

Action Research with Covid-19 Patients

I wonder how many similar narratives there are out there. We have worked hard to include family and friends in the treatment of our patients, acknowledging their importance (Ringheim A, 2015). We have had several action research projects involving patients where one of the aims has been to learn the patient’s version of living with the disease and improve their participation in their own care (for example, see Garelius et al. 2014 , Garelius et al. 2016, Lindroos Kölqvist 2017, Ringheim &Pihlström 2015). Our use of Photovoice helped us understand the importance of maintaining connections with the closest family and friends, but also how difficult it could be for patients to inform their family about the disease: ”I was caught in a trauma, completely paralyzed by the thought of telling my children about the diagnosis. I felt that I betrayed  my children by getting ill” ( Garelius H et al.  2020)

By working with these projects – and in our everyday clinical work -we know that family and friends are important to the patients. Action research can enable these stories to emerge when they may not otherwise do so in normal patient-doctor-family interactions in a hospital.

But then suddenly—in a time of crisis—we forget all this, and our focus moves to how to avoid the virus.  Don’t get me wrong, I agree that the virus is an enemy to avoid. But when will we be brave enough to allow human contact again? I think that requires some courage, and I am grateful that sometimes we find this courage and creativity, so that our patients can manage to move on.

References:

Garelius H, Andonovska. V., Brundin S, Lindqvist MR, Lindroos Kölqvist P, Krantz K, Ottosson E, Hirvi H, Larsson J, Dahl A-K, Nilsson Ehle H, Ringheim A. (2014). Patient participation improves the out-patient unit at the Section of haematology! Paper presented at the Quality Days at Sahlgrenska, Goteborg.

Garelius H, Lindroos Kölqvist P., Ringheim A, Lindqvist MR, Lifvergren S. (2016). PhotoVoice for Patients with Myelodysplastic Syndrome –Understanding the patient’s story Paper presented at the International Forum on Quality and Safety in Healthcare, Singapore.

Garelius H, Lifvergren. S., Lindroos Kölqvist P, Lindqvist MR, Ringheim A,. (2020). Understanding experiences from patients with a malignant blood disease: Conducting PAR together with patients in the co-creation of knowledge.

Lindroos Kölqvist P, Garelius H., Ringheim A, Lindqvist MR, Lifvergren S. (2017). Photovioce for MDS patients: Understanding the patients’ story. Paper presented at the 14th International Symposium on Myelodysplastic Syndromes, Valencia, Spain.

Ringheim A, Pihlström A. (2015). To model for learning- young adults, relatives and co-workers develops forms of experience-based quality improvement in a Hematology unit. An Action Research project. Retrieved from Jönköping, Sweden.

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More Methodspace posts from this series about Action Research