The Experience of Relatives of Nursing Home Residents with COVID-19: A Qualitative Study

Figures & data

Table 1 Interview Guide

Interview Guide
Theme	Questions
Introduction	Can you tell me about how you experienced being a relative of NN when she/he was ill with corona?/Was ill and died of corona?
Isolation/visit regulations	How did you keep in touch with NN when she/he was ill? How did you feel about that?
Prioritization/treatment clarification	Were you involved in/informed about what treatment NN should receive for corona?/Did you have a treatment clarification interview?/How did you experience the treatment clarification?
Terminal phase	Then NN became seriously ill with corona. How did you experience this period?/How did you experience NN dying under such circumstances?
Health professionals’ care and competence	How did you experience NN being taken care of by the health professionals at the nursing home? Did you feel confident that NN received good treatment and care? Did you get enough information?
The family’s handling of the situation	How has this time been for you as a family?

Table 2 Examples of Codes, Subcategories, and Themes from Content Analysis of Covid-19 in a Nursing Home, Relatives’ Experience

Theme	Relatives’ Experiences of the Pandemic
Category	The difficult choices			Maintaining the relationship		Experiencing support
Sub- category	To visit	Not to visit	To be left behind	Separation due to visit restrictions	Giving up control	Trust and support from the staff	Need for information
Codes	Risk of death. Witness to strenuous death. Support in the decision. Flexibility from the staff.	Risk of own infection. Consideration of resident’s will. Consideration of the family.	Burdensome media coverage. Being in quarantine/ isolation. Own infection. Alone in grief. Funeral/ memorial service.	Burdensome visit restrictions. Fear of not being recognized. Being physically separated. Digital tools, with their benefits and challenges.	The doctor as the family’s deputy. The nurse as the family’s deputy. Satisfied patients = satisfied relatives.	Good dialogue. Knowledge of the patient’s situation. Previous negative experiences weakened trust. Previous positive experiences strengthened trust. Staff who care.	Lack of information/ routines creates insecurity and chaos. Continuous information and updates provided security. Permanent contact person. Close dialogue with the leader. Knowledge of infection control provided predictability.

Table 3 Examples of the Analysis Process from Meaning Unit to Theme in the Content Analysis of Relatives’ Difficult Choices

Meaning Unit	Condensed Meaning Unit. Description Close to the Text.	Condensed Meaning Unit. Interpretation of the Underlying Meaning.	Subtheme	Theme
There was a lot of uncertainty around this. It was that feeling of going in, I was very scared that Dad would not understand that it was me (…) Will he understand that it is me?	Difficult to decide whether to visit or not. Would he recognize me? It was a difficult decision.	Were visits worth the risk of infection if her father did not recognize her?	Separation through visit restrictions	Relatives’ experience of the pandemic
We tried Skype once (…) but he did not understand anything. He saw us, but we were not there, so he thought we were on TV.	We tried to keep communicating via Skype, but it did not work so well, the technology is unfamiliar.	Communicating through technology works poorly.
I notice that the months of contact restrictions started to do something with him. Especially not being able to give a hug, because he was very into hugs. So, every time we came, he said, “Is it allowed to hug?” But no. “Oh, this is so sad,” he said.	It was hard for Dad that he could not hug us.	Less physical closeness was emotionally burdensome.
It hurts a lot when you cannot be there. And the worst time, I think, was before he got sick and we could not come and see or follow up, due to the national visit restrictions.	The worst was really before he got sick, because then we were not allowed to visit him.	Visit restrictions are perceived as intrusive to relatives.
They are so kind to mom, and if mom is happy, then it’s okay, then I am happy. Then I am reassured.	Mom is happy, and I have seen that they are kind to her. Then I am satisfied.	When the patient is satisfied, relatives are satisfied and relaxed.	Giving up control (to staff)
I felt the doctor became our extended arm. She spent a lot of time with us and I really appreciated that. She said: “Whatever you decide to do, there is nothing right or wrong. There is no one here who judges and walks around and says, ‘Here, no relatives can come.’”	The doctor became our extended arm when we chose not to visit Dad. She supported us in our decision, which was very important.	The doctor became relatives extended arm.