In collaboration with the interdisciplinary consultation hour (in German) at the Stadtspital Zürich Waid hospital, nurse Linda Frei and her team have created a home care assistance for those affected by Long COVID. She talks about her experience with the symptoms of the illness – something which even nurses still don’t have established guidelines for dealing with.
Linda Frei, how do people affected by Long COVID access your Home care assistance?
Generally speaking, they get referred by the Long COVID clinic at the Stadtspital Zurich. This referral can then be renewed by their general practitioner (GP) or specialist as required. However, GPs, specialists or those affected can also approach us directly. Patients often come to us when they are already experiencing quite a lot of distress.
Why is that?
Many people don’t know about the possibility of outpatient care at home for those affected by Long COVID, even though it is a basic insurance benefit covered by health insurance. Shame and stigma also play a part. Admitting that you need help is easier when you have a broken bone – something that everyone can see.
Linda Frei is the director of Spitex Herzenssache in Zurich. (Image: made available)
How exactly do you help those affected by Long COVID?
It differs from person to person. For most people, psychosocial care is important. I’ll explain that in more detail in a minute, but first I’d like to talk about the word “psychosocial”.
Go ahead.
It’s very important to me that Long COVID isn’t put in a “mental health” box. Long COVID is a somatic illness that affects the body. It can be an enormous stress factor for those affected if it isn’t recognized as such. There is a wide range of symptoms, and the sometimes huge functional limitations it brings – Fatigue is an example – also have psychosocial impacts. If you can hardly do anything anymore, when even going for a walk or talking on the phone with a friend is too much, it has an impact. And this is exactly where our support can be useful.
“The mental stress is debilitating: the fear that you won’t have enough strength.”
What can you offer? There isn’t currently any causal therapy.
Energy management, such as Pacing, is extremely important in these situations. Those affected learn this in ergotherapy. But then they go home, and there might be three children to look after, for example. This can make it difficult to put what they’ve learned into practice. We visit those affected in their daily surroundings and can help translate the theory into practice.
Then there’s the mental stress: the fear that you won’t have enough strength. Those affected suddenly find themselves in a new reality with lots of questions left unanswered. The home and care assistance can also help here: those affected report back that they feel reassured that they won’t be left in the lurch.
What other services are required?
We help by putting together an adapted daily schedule, for example. We help coordinate relatives, the support network and the authorities. And we provide advice: How do I explain my condition? How do I express myself, how should I communicate? How do I maintain social contact? Coping strategies for difficult emotions such as anxiety, anger and frustration are also important. This also includes, if required, gentle activation exercises, relaxation and mindfulness training, and aromatherapy and smell training.
You could summarize it as follows: those affected often feel ignored and abandoned. We take them seriously and use our expertise to help them, even when the going gets tough.
How do you cope with this strain as a nurse?
Dealing with doubt and pain is nothing new for healthcare professionals. We don’t get overwhelmed by it – it’s a part of our job, which is also helpful for those affected. They don’t need to worry that they will overwhelm us as they might their relatives, and can let off some steam with us. It’s our job to create a stigma-free space, where there is no hurtful doubt, and every feeling is welcome. It often has a soothing and healing outcome.
Linda Frei (center, red trousers) with the interprofessional clinic team at Zurich Stadtspital Waid. They received the SAMS award for interprofessionalism (Swiss Academy of Medical Sciences). (Image: made available)
What are the goals of Long COVID care?
Providing those affected with the best possible support as part of an interdisciplinary treatment concept, and maintaining or improving their level of functioning and their scope for action. Depending on the severity of their symptoms, this can mean that they are able to keep working, or that their everyday life and the household remain manageable.
Here’s an example: a client can clean the mirrors without any problems, but as soon as they have to bend over to clean the shower tray, they get dizzy. Dizziness is quite common with Long COVID. In this case, we look at the situation together: are any other postures possible? Is it better if they kneel down? Are there any suitable aids and tools available? By doing this, we can get a bit of normal everyday life back by making just a small adjustment.
What do you use as a guideline for care? We’re only just gaining experience with Long COVID.
Yes, there are still no clear guidelines. The main principle is “no harm” – don’t cause any harm or make anything worse. We’ve come across certain symptoms in other illnesses, such as ME/CFS. We use this expertise in things like Pacing, their daily schedule or dealing with negative feelings. We meet the interprofessional board once a week at the Stadtspital Waid hospital and talk to the doctors, ergotherapists, physiotherapists and psychologists. We continuously evaluate the treatment plans, and amend them if required.
“A person’s entire life is influenced if their health changes.”
What difference can you make to cognitive symptoms?
It’s often the case that when you’re feeling your worst, you’re confronted with a lot of forms and you have to explain yourself in lots of situations. If you suffer from the typical Long COVID symptom of brain fog, which typically presents as forgetfulness and difficulty concentrating, these things become a huge challenge. Dealing with these symptoms requires a great deal of expertise. In these cases, the care team are there to help with a clear head, and to guide and encourage in a resource-oriented way. It’s a type of case management combined with clinical expertise.
So it’s all about holistic support and care.
Exactly. We can accompany patients to appointments with their trusted doctor, for example. For long-term cases, this will eventually come up. These kinds of appointments have a big influence and need to be understood. They can also be very stressful.
I would summarize it as follows: as well as somatic care, we also examine the psychosocial effects that Long COVID has on patients. One shouldn’t forget that everything gets impacted when a family member’s or employee’s health condition changes. These effects are real. Helping with this means we can pave the way to recovery.
Linda Frei is founder and director of Spitex Herzenssache in Zurich, which offers Long COVID care.
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