Patients and Families Provide Insight
Researchers with Cardiff University and the University of Hertfordshire conducted the study via an online survey. The goal was to gain insight into the quality of life of COVID-19 survivors and their family members. Distributed via social media platforms, the anonymous questionnaire collected information from adults ages 18 and older. Of the respondents, 735 participants had been diagnosed with COVID-19, 571 people were their partners, and 164 participants were family members. Data were collected from May until August of 2020. The study helped highlight the struggle that family members endure, as they help their loved one battle the virus. “Family members…experienced considerable emotional and psychological impact due to their relative’s COVID-19, with 93% of family members reporting being worried, 82% feeling frustrated, and 78% being sad,” states Rubina Shah, MPH, a PhD student at Cardiff University in the U.K. and lead author of the study. “Over…half of the family members reported impact on their sleep and sex life,” Shah notes. Other noteworthy findings include an impact on eating habits, family activities, and work. An increase in family expenses was also reported. While not diminishing the lasting symptoms COVID sufferers feel, the results give voice to the sometimes silent yet supportive family members. The study does provide helpful insights but is not without areas of weakness. Because the study was provided online, only those with internet access could respond. Additionally, the survey itself could only be answered by those who could read and understand the English language. Although the methodology and subsequent results are not as far-reaching as desired, they are not without merit. “Our results have shown the substantial impact of survivor’s long COVID-19 on their partners and family members,” adds Shah.
How the Results Can Support Families
The CDC and other organizations continue to monitor the impact of long-haul COVID-19 on its survivors. But few reports have focused on how families cope with their loved ones’ ongoing sickness. The results provide support for the help they need. The impact is not just mental and emotional. Continuing to fight the virus can also exact a financial toll. If the patient suffering with COVID is the main breadwinner but too fatigued to work, a family is faced with the task of securing that extra income. A patient may no longer be able to care for themselves or perform daily tasks around the house, thrusting family members into the role of a caregiver. “The study adds to the evolving evidence of ‘long COVID’ but also adds new evidence about its impact on family members of COVID-19 survivors, setting alarm bells among healthcare agencies and policy makers and informing them of post-COVID support needs of family members, in addition to that of the survivors,” explains Shah. Validation is also a key impact of the study. Many families may suffer in isolation. The study findings help them know that they are not alone in the far-reaching impact they are experiencing from long COVID.
What Is Long COVID?
There is no consensus on the terminology to refer to this phenomenon. However, long COVID is generally considered to be symptoms lasting beyond four weeks. Patients with mild symptoms at the four-week mark may be encouraged to continue to be watchful. Those experiencing severe issues may have additional medical intervention. “We notice a lot of people with fatigue. We have symptoms which are called post-exertional malaise, which is excessive pain in the muscles and discomfort from just minimal activity,” states Alba Azola, MD, co-director of the Physical Medicine and Rehabilitation Post Acute COVID Team Clinic at John Hopkins Hospital and assistant professor of physical medicine and rehabilitation at John Hopkins School of Medicine. She adds that heart palpitations, chest pain, shortness of breath, and brain fog are just some of the other potential symptoms.
What Else Can They Do?
Unfortunately, there is no quick fix to COVID. While the vaccine is helpful in bridging the gap between sickness and health, there are numerous people still engaged in fighting the viral symptoms. Shah offers insight into how families can help. “The study has shown a huge emotional and psychological impact of a person’s long COVID on their family members. It is important that family members report any such impact to their healthcare providers who can then direct them to appropriate support, which could include mental health counseling, signposting to community support, and social services,” Shah advises. Keeping a unified perspective can also be an encouragement and support to the family members. “It becomes a whole family issue,” Dr. Azola concludes.
