Impact and adaptations of Family Life and Home Life

Daily family life at home was being substantially affected by having a family member with Long Covid. The families we talked to described challenging situations and changes to their daily routines. Here we discuss changes to:

  • Essential activities
  • Household adaptations
  • Concerns over safety
  • Caring and family time

Essential activities

The parents we spoke with often discussed how they had to reduce their activities to the ‘essentials’ of running a home, namely getting meals on the table, the washing done, and doing the school run. For many parents, feeling able to cook was their benchmark. This was more challenging for families spread across multiple households, or where there was a sole parent looking after young children.

Helen has put practical strategies in place to ensure she is spending her energy on the things that matter most at home, including prioritising family meals and her son’s bedtimes.

Mealtimes had substantially changed for many families. People we talked to worried that their meals had become ‘less healthy’ because they could not prepare food from scratch and relied more on convenience foods. Teenagers James and William said that their older brother had taken on a lot of the cooking, and had to learn fairly quickly. Others had extended family or neighbours helping out with meals. Ada’s mother-in-law took on much of the cooking while she was most unwell.

Ada found it sad and frustrating that she has lost the capacity to cook a proper meal for her wider family. Her mother-in-law has taken over the cooking for their weekly family meals.

Household adaptations

Families talked about how they had reconfigured or adapted household spaces to help manage their Long Covid at home. This included making spaces safer, minimising noise, and trying different sleeping arrangements. This was more difficult for families living in small homes or with larger families, see ‘Self-management and self-care of Long Covid at home’.

Michelle, whose young son also has Long Covid, said, “our house is heavily adapted. To get me from the kitchen to the lounge I’ve got two touchpoints in the hallway.” This was particularly challenging if the house had more than one level, as people often found it difficult to manage stairs. Michelle summarised, “once you’re downstairs, you’re downstairs, and once you’re upstairs, you’re upstairs.” Access to the bathroom was another issue. People were using wheelchairs to get around had often found that there were areas of the home that were no longer accessible. Jana had shifted her son, who was using a wheelchair, from sharing a bedroom with his older brother to sleeping in the living room. This helped to minimise disruption while his brother was sitting exams.

Jana’s son Samir is using a wheelchair and has moved to sleep in the living room downstairs where he can get to a bathroom on his own. She hopes an occupational therapist might suggest ways of adapting their home.

Sasha’s young daughter was sleeping in her mother’s bed so that she could be attended to at night if needed. Some parents with Long Covid had temporarily moved into a spare bedroom so they could get some rest. Clearly, this was not an option for those who did not have a spare bedroom. Rosie, who shares a room with her 14 year old sister, often has the lights in her room turned down low or on green, which she said was supposed to be good for headaches. She thought her sister had found it ‘strange’.

Colin talked about how hard it was for his daughter Rosie to find somewhere to be quiet and rest in a seven person household.

Concerns over safety

Some parents were particularly worried about keeping themselves and their families safe while dealing with Long Covid symptoms such as brain fog. Razia burned her wrist on the kettle, saying “anyone in their right mind would know that if you’ve put the kettle on, it’s going to get hot.”

Amanda sometimes burns things in the kitchen due to her brain fog and is constantly worried about her family’s safety.

Lucy B told us that she was careful to only take a shower when there was someone else in the house to help, if needed.

Lucy B had to move back to her parents’ home where there was a downstairs bedroom. Her family made lots of adjustments to make the house safer for her.

Caring and family time

Many families had experienced changes to the caring dynamics within their families, and missed spending time with their children. Some parents with Long Covid, like Ayesha and Charlotte, found it difficult to care for their children while they were unwell with Long Covid, and felt like they were absent from their children’s lives. For more discussion of caring and family activities, see ‘Changes to caring roles’ and ‘Family, Fun and Social Life’.

Ayesha suffered several debilitating symptoms when she was most unwell, and she was also pregnant at the time, with two young children.

People with Long Covid found it difficult to stay involved in family life and activities. Parents talked about missing milestones with their children. Both Ada and Golda said it was difficult to be the parents they wanted to be for their children. Children with Long Covid also said that they missed their family time.

Ada feels like she has missed out on her children’s development.

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