A new study from Cardiff University in collaboration with the University of Hertfordshire has revealed the huge “secondary burden” imposed 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, to suggest family quality of life is being “severely affected” and a major support system is needed for both survivors and those closest to them.
Survivors and their families talked about the huge impact on their lives and supported the calls for more support.
Billie-Jo Redman, 27, an Essex mother, suffers from fatigue, brain fog and daily waves of pines and needles, and sometimes has such a high heart rate that she has to wear a heart monitor 24 hours a day.
“My life seems to be over. I used to go on adventures with my son Roman, now I have days when I can’t even take him to school,” he said.
The main author is Rubina Shah, PhD. Cardiff University School of Medicine student said: “We have all seen the devastating impact that long COVID can have on survivors, but we have heard very little about how it can affect the lives of their closest beings and dear ones.
“Our study reveals a domino effect from the COVID patient himself to all those closest to him, which affect from the concern and frustration they feel to their ability to enjoy family activities or the impact of couples on their relationship and sex life .
“The impact of COVID can be profound and lasting; there needs to be a holistic support system that is sensitive to the needs of survivors and their families to help alleviate this burden.”
About one in five people have symptoms of long-term COVID five weeks after an initial infection and one in seven after 12 weeks, according to the National Statistics Office. During the four weeks of February 6, it was estimated that 1.1 million people in the UK would be affected.
The researchers conducted the study because there was so little information about what families go through when a member has long COVID. They say it’s vital to assess it to help understand what support they may need.
A global online survey was conducted last summer to measure the impact that completed 735 COVID-19 survivors 12 weeks after diagnosis and 571 partners and 164 family members.
It was found that the greatest impact was “feeling worried” (94%), followed by family activities (83%), frustration (82%), sadness (78%), sleep (69). %) and sex life (68%). Two-thirds (66%) reported an impact on the holidays and more than half (56%) reported an increase in family spending.
There was a significant gender difference between family members, women felt sadder and had more impact on daily travel and sleep. The impact on sex life was experienced by significantly more men than women.
The researchers said the findings suggested that policymakers should consider developing and commissioning a range of support services, including needs-based mental health counseling and local support groups.
“Tragic effect on our lives”
Billie-Jo, who previously had no health issues, tested positive on Jan. 9 with common symptoms of COVID. Ten days later he was fine, but in late February he felt as if he was “dying while standing.”
She moved from London to Essex before the first closure, so she has little family support because they live too far away and feel that her illness has had a huge impact on life with her son.
“The hospital doesn’t know what to do with me. They can see that my heart rate is too high, but they don’t know why,” he said.
“Everything has changed. My life feels like it’s over. I was going on adventures with my son Roman, now I have days when I can’t even take him to school. It has had a tragic effect on the our daily lives. There is a need to give more support to families. “
Mrs. Shah said: “Our research is the first to look at the impact of this devastating disease on surviving partners and families.
“It is so important that we understand the needs of those closest to the survivors to ensure the overall well-being of families.”
The researchers said work needed in the future to measure the persistence of the impact family members and find out if there are differences in family impact between ethnic groups.
Additional research could also include assessing the impact of interventions, conducting local studies to report on policies and practices in the planning of local support services.
Measuring the impact of Covid-19 on the quality of life of survivors, partners and relatives: an international cross-sectional survey, BMJ Open (2021).
Citation: Long COVID puts “huge burden” on families of survivors, according to new research (2021, May 25), retrieved May 25, 2021 at https://medicalxpress.com/news/2021-05- covid-huge-burden-survivors-families .html
This document is subject to copyright. Apart from any fair treatment for the purposes of private study or research, no part may be reproduced without written permission. Content is provided for informational purposes only.