Caring at a distance

With visiting restrictions in place in almost all NHS trusts, family members were not able to be with their loved one in hospital. Without visitors, patients were isolated and cut off while they were in hospital (see also ‘Experiences of infection control measures’). Staff were without family members or friends to help them get to know their patients (see also ‘Contact between family members and staff’).

Many of those we interviewed found not being allowed to be with their loved one highly distressing (see also ‘Staying in touch despite visitor ban’) and sought creative ways of ‘being present’ and connecting with the staff caring for them in the hospital.

Here you can listen to family members talk about their experiences of how they provided care at a distance. This page covers:

  • Providing support and advice over the phone
  • Dropping things off at the hospital
  • Personalising and supporting care at a distance

Providing support and advice over the phone

Patients in ICU were often unconscious for much of their stay. When they were awake, they were frequently disorientated and exhausted. It was particularly difficult to focus and take in new information. Some relatives we spoke to tried to help their loved one make sense of information that they did not understand. With visiting restrictions in place, this had to be done via the phone and via text.

Kate described how her husband was too unwell to grasp what was going on around him in hospital: “I mean they may have explained it to him, but I think, one of the issues is, that he was probably so oxygen deprived he didn’t really understand that.” She helped him via text, drawing on what she knew from her own medical training, and clarified missing information with staff over the phone. Sadia obtained information about her father’s condition from clinicians and then helped her father do breathing exercises on their video calls.

Sadia collected information about her father’s condition, and then helped him do breathing exercises on the phone.

Dropping things off at the hospital

Family members could sometimes drop things off at the hospital reception or the entry door of the ward. This served a number of purposes: to deliver food or things that their loved ones liked, to contribute to the personalisation of their care, and to support the staff in a time that was very difficult for them too. During these drop-offs, family members had a chance to put faces to the staff members they had spoken to on the telephone, and vice versa. Shireen’s son brought food for his father to the hospital: “Sometimes, my son took the food and handed to the security man and write the name and the wards. So, they gave it to him. He wants very warm and it’s different hospital food and homemade food is different.”

Sadia regularly brought in things for her father. She felt the nurses “were great in terms of getting stuff to my father… they understand, it’s not an easy position for them to be in, to not allow family members in.” To Sadia, dropping things off at the hospital made life feel just a little bit more ‘normal’.

Sadia dropped off vitamin C and coffee for her father on the ward, which mimicked normal life.

Things were quite different early on in the pandemic, when family members were not always allowed to take things into hospital. Dana described how she found a workaround, which points to the uncertainty that characterised those early weeks and months.

When Dana wanted to drop off earphones for her husband she was not allowed to do so due to a perceived risk of contamination.

Personalising hospital care

Personalising care was particularly important to family members. Dana describes how she sent “care packages” to enable them to take care of her husband in a more informed and personal way:

Dana and her kids made care packages to motivate staff and provide them with information about her husband.

The objects family members dropped off helped facilitate conversations in hospital between patients and staff, in a way that supported them to develop a closer relationship.

Sending pictures and audio to support nursing care

Many patients were confused when they awoke from being sedated for mechanical ventilation. One woman said that if she could change one thing in her experience of Covid in ICU, it would be that a family member could have been present at her bedside when she woke up from ventilation. This would have helped her tremendously with her confusion: “When somebody wakes up from being ventilated, I think that a family member should be there because it’s pretty horrific to wake up from something like that and nobody is there that you know, yet they all know your name, but nobody is there that you know.”

To compensate at least in part for the absence of family members in the ICU, nurses sometimes asked family members to be on the phone when their loved one was woken up from the induced coma. Others were asked to send in pictures or audio files to give the patient “something happy”, familiar and motivating to see when they awoke. Paul said his wife “sent in a lot of photographs of the pups, and one of my son, my daughter and my wife. So, when I did wake up one of the first things I seen, apart from the doctors and nurses, was my dogs, 12 puppies. So that sort of cheered me up. It was a positive. I had to keep looking for positives.”

The ICU staff told Paula all they knew about Victor was his name and age and asked her to send in pictures and audio. These inspired Victor not to give up.

A nurse asked Stephanie to send pictures to provide motivation and a topic of conversation: “One of the nurses phoned me and said I’ll send you my e-mail address can you e-mail me some photographs of Peter’s and we’ll print them out and out them on the bottom of his bed so it will give him a bit of motivation to improve and know what he’s got to come home to, you know. So, I thought that was nice as well, you know and so they did they had these pictures at the bottom of his bed, and it gave them a topic of conversation as well because they could ask him about things in the pictures.”

Overall, not being able to be present in the hospital was extremely difficult if not traumatic for family members. These little ways of establishing presence in the hospital, although not a substitute, made it easier for some family members we talked to, to manage this challenging time, and made important contributions to the way in which care could be provided for their loved ones.

Visiting the hospital in exceptional circumstances other than end-of-life visits

Some relatives were allowed to see their loved one because they themselves were in hospital at the same time. For instance, John could see his wife in ICU because she was admitted on the respiratory ward, and the consultant gave permission for them to meet. When staff members knew somebody who had been admitted to hospital, they could sometimes see them in hospital. But even this was not straightforward. Melanie, for example, could not see her friend Rhod as often as she wished due to variability in the supply of personal protective equipment (PPE) at the time. Deborah and her children were asked to come into hospital to help their loved one through their delirium.

John and his wife were able to see each other when they were both in hospital.

End-of-life visits

Thousands of people have died because of the Covid-19 pandemic. Each number is a person who lost their life; each death was a loss for...