Long Covid places ‘huge burden’ on survivors’ families, new research suggests

26 May 2021

A new study by Cardiff University in collaboration with the University of Hertfordshire has revealed the huge “secondary burden” placed on those closest to people living with Long Covid.

The researchers surveyed more than 700 COVID-19 survivors along with their partners and close relatives to understand for the first time the impact of the disease on families as a whole.

The findings, published today in BMJ Open, suggest family quality of life is being “severely affected” and a major system of support is needed for both survivors and those closest to them.

Calls for more support

Survivors and their families spoke of the huge impact on their lives and backed calls for more support.

Billie-Jo Redman, 27, a mum from Essex, suffers from fatigue, brain fog and daily waves of pins and needles, and at times has such a high heart rate she has to wear a 24-hour heart monitor.

“My life feels like it’s over. I used to go on adventures with my son Roman – now I have days where I can’t even get him to school,” she said.

About one in five people have symptoms of Long Covid five weeks after an initial infection and one in seven after 12 weeks, according to the Office for National Statistics. In the four weeks from 6 February, 1.1 million people in the UK were estimated to be affected.

The researchers carried out the study because there was so little information about what families go through when a member has Long Covid. They say it is vital to assess this to help understand what support they might need.

Professor Sam Salek, co-author on the paper and Professor of Pharmacoepidemiology at the University of Hertfordshire, said: “This is the first study assessing the impact of Long COVID on the quality of life of survivors' families, as well as that of themselves, and therefore fills an important knowledge gap.

“This information will potentially have a major impact on the development of both local and national support services for such patients and their families as we move forward, having secured a return to normality, to tackling the aftermath of the pandemic. The measurement techniques used in this study can be employed downstream to evaluate the implementation of Long COVID community support services”.

A global online survey to measure impact was carried out last summer and was completed by 735 COVID-19 survivors around 12 weeks after diagnosis and by 571 partners and 164 family members.

The biggest impact was found to be on “feeling worried” (94%), followed by family activities (83%), feelings of frustration (82%), feeling sad (78%), sleep (69%) and sex life (68%). Two-thirds (66%) reported impact on holidays, and more than half (56%) reported an increase in family expenses.

There was a significant gender difference among family members, with females feeling more sad, experiencing more impact on everyday travel and on their sleep. Impact on sex life was experienced by significantly more men than women.

‘Tragic effect on our lives’

Billie-Jo, who previously had no health issues, tested positive on 9 January with usual Covid symptoms. After 10 days she was fine but by the end of February she felt like she was “dying upon standing”.

She moved from London to Essex before the first lockdown, so has little family support because they live too far away and feels her illness has had a huge impact on life with her son.

“The hospital just doesn’t know what to do with me. They can see my heart rate is way too high, but they don’t know why,” she said. “It’s had a tragic effect on our daily lives. There needs to be more support for families.”

The researchers said the findings suggested policymakers should consider developing and commissioning a range of support services, including needs-based mental health counselling and local support groups.

The researchers said future work was needed to measure the persistence of the impact on family members and to find out whether there are differences in family impact between ethnic groups.

Further research could also include assessing the impact of interventions, carrying out local studies to inform policy and practice in planning of local support services.

  • The paper, Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: A cross-sectional international online survey, is available online here.
  • Methods: A global online survey using social media in COVID-19 patients and partners or family members aged over 18, carried out in June to August 2020. Participants were recruited by self-selection via social media platforms.

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