Changes to caring roles regarding Long Covid
Here we outline how Long Covid has caused changes to caring roles, as families have had to adapt to the changing care needs of family...
In this section, we discuss the impact of Long Covid on families’ lives outside of the home. People with Long Covid and their families had to make choices about what to spend their time and energy on, as they could no longer do everything they used to do.
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The families we spoke with talked about going from being very active to doing very little due to their Long Covid symptoms. Walks, cycling, playing sports and family trips such as going to the beach were all put on hold as symptoms such as fatigue prevented them from going out. Some people felt that their sense of identity as a family was challenged.
James, whose brother and mother also have Long Covid, said that it felt “the whole family’s been like degraded because of all this and we’ve kind of dropped in abilities, skills, hobbies. For example, I used to do like four things a week and now I do none.” Mehjabin’s family had to pull back on creating content for their YouTube cooking channel while their mother was unwell.
People had sometimes been able to continue to do the activities or sports they loved but with adaptations. When Paul’s family goes to the park, his wife and daughter will walk there and he will drive round and join them. Harry can still play basketball when friends come over; he shoots in the net with the basketball but can’t run and pass. Lissie can still have walks in the countryside but they’re shorter and she needs a ‘down day’ at the weekends.
Children and teenagers we spoke with often found that they were limited in their ability to play sports or do other activities. Others could still take part, but there were consequences such as relapses in symptoms or feeling even more tired. William said that he had still been able to play badminton, but only “between relapses”.
A few young people were able to continue with some normal activities despite having Long Covid symptoms. Francesca felt relieved that her daughter has not been as seriously affected by Long Covid as she has been herself.
Parents with Long Covid told us about how their social circles have shrunk since becoming ill, as their priorities shifted with limited energy. Helen said she has developed closer relationships with other parents she met at the school gate, which was a key part of her day. Lachlan described how limiting his social life also led to less time spent with his young daughter.
Many children and teenagers felt sad that they could not spend as much time with their friends. Despite connecting with their friends through messaging or social media, they felt upset that they couldn’t see them in person very often.
People found planning in advance for social activities very difficult. Evie was frustrated that she was unable to keep her plans with her friends.
Parents were very aware that their children needed to pace themselves with social activity. As well as challenges with making conversation due to brain fog, Catherine suspected that her teenage son was probably unable to connect with his friends as they moved on with their lives. She said, “they all are busy. Summer’s doing all sorts of things that teenagers do, being on holidays and also festivals and jobs… some form of further education and you know he’s not doing anything. So I imagine that’s quite hard to know what to talk about.”
Family trips or holidays were often now very difficult and challenging to plan. The families we talked to spoke about how outings and holidays they used to do were now physically exhausting and they were reconsidering future plans. Maryam’s family recently cancelled a holiday to visit her mother in Pakistan, saying, “We cancelled it because it’s not easy.” She and her husband told their children that their father had to work as an excuse because they didn’t want to disappoint them. However, Sonal’s son surprised her with a holiday, to give her a break and a rest from her responsibilities at home.
Participation in religious services, such as attending church or going to the mosque, was affected for some families. Colin explained that, “Rosie’s not coming to church, for example, like she would have done and that was an important part of our family, but it’s just, you know, because her stock of energy is so low.”
Important occasions or festivals, such as Ramadan or Eid, were sometimes too much to manage. Weddings or funerals could be particularly challenging.
However, some families found ways to manage. Vonnie described how instead of her attending events, her family brought the events to her, so she wouldn’t miss out.
Here we outline how Long Covid has caused changes to caring roles, as families have had to adapt to the changing care needs of family...
Here we describe how families were affected by changes to parents’ work which were brought about by Long Covid. This section includes the experiences of...