Providing care for someone can determine the quality of their daily lives. Whether it’s childcare, elderly-care, self-care, healthcare, etc., all types of care are essential to individuals’ wellbeing and the nation’s economy. The care we give and receive every day is vital for our society to function properly. However, it is often invisible and undervalued labor.

COVID-19 emphasized the necessity of care. It showed us the ones who needed care the most, brought light to the personal networks of care we can trust, and exposed where our care systems fall short.

About Our Collaborators

Farrah Karapetian, an artist, writer, and professor at the University of San Diego, collaborated with GroupSolver® to investigate the issues surrounding care, particularly during the Coronavirus pandemic. Our study data will help Farrah and her collaborators, professors Victoria Fu and Matt Rich, create C.A.R.E (Collective Acts of Ritual and Empathy), an interactive project at the San Diego Central Library. C.A.R.E will further engage the public and continue this exploration of care. Farrah explains, “[The exhibit] adds a layer of knowledge to investigations of care: one that is haptic, connected to touch and action using movement and the body – a key component of caretaking…The goal, in coming back together after the height of the COVID-19 crisis, is to honor the hard work communities do internally to care for themselves and others, and imagine a future that can address current shortfalls.”

About the Study

Our study collected insights from 200 respondents who identified as caregivers for a loved one. We explored the general concepts of care, as well as the specific faults and shortages of our care systems. The results gave Farrah and her collaborators a better understanding about experiences with caregiving, changes in these experiences as a result of COVID-19, and the tools used in caregiving.

How Caregivers Perceive Care Itself: Physical vs Emotional Care

When asked what self-care means to them, respondents replied in one of two ways: describing how they physically care for their bodies or how they regulate their emotional wellbeing. 83% of respondents believe that self-care is “providing food, clothes, and personal cleanliness” for themselves. This indicates that they interpret self-care as giving themselves basic physical needs. Similarly, 80% described self-care as “I take care of my own personal hygiene”. On the other hand, many respondents agree that “Self-care is our emotional wellbeing” (81%) and it is “Something you do for yourself to help calm and relax” (77%).

Question: What is self-care to you?

We then asked respondents to describe how they show care for others. Similar to the self-care question, respondents replied in distinct ways. Responses such as “Support them medically” (87%), “Cleaning” (80%), and “Make sure meds are taken” (76%) show acts of physical care, while responses such as “Kindness” (84%), “Providing encouragement when needed” (85%), and “Providing emotional support when needed” (85%) display a more affectionate and emotional perspective of care.

Question: How do you show care for others?

All aspects of care are important and meaningful. However, the most memorable acts of care often involve an emotional and personal connection. Respondents indicated that some of the most memorable acts of care in their lives were “Showing them love” (90%), “Support in times of grief” (82%), and “Seeing them happy” (81%). Physically caring for someone can be essential, however, respondents indicated that emotional care holds a special significance.

Question: What are some of the most memorable or recurrent acts of care in your life? This can be self-care, caring for others, or others caring for you.

The Financial Impacts of Caregiving

Caregivers provide significant and indispensable labor, however, instead of being paid for their work, they often bear the costs. The vast majority of caregivers feel the financial impact of their responsibilities. 82% of respondents agree that caretaking, or ensuring that caretaking is secured, impacts them, their friends, or their family economically. Additionally, 54% of caregivers personally pay for all or some of the care they provide.

The financial burden on caregivers can be huge, especially when their work is not done for a salary. Their responsibilities are often unrecognized by the government as a trade or profession. Despite their unrecognized efforts, caregivers provide some of the most valuable labor for our economy and society. If caregivers’ labor was recognized as a profession and the economic activity was recorded, the estimated value of this unpaid work is about $10 trillion globally per year. Since this is not the case, caregivers report that they “Need more funds” (71%) and “[Caregiving] drains bank accounts” (64%).

Not only do caregivers need more compensation, but they also need more help. 84% of caregivers agree that the care system needs “A daily in-home nurse paid for by Medicare to help share the load” and 77% say they just need “Another pair of hands”. It is evident that caregivers have too many responsibilities with too little recognition.

The COVID-19 Pandemic Adds Burden and Fear on Caregivers

COVID-19 presented even more challenges for caregivers. 67% of respondents agree that COVID-19 made caretaking more difficult for them, their friends, or their family. Caregivers’ lives have been changed by the pandemic, just like all of ours, in different ways.

• Those who care for immunocompromised people face the fear of their loved one contracting the disease. 77% of caregivers report that their loved one “…can get sick easy so I have to worry constantly about [them] catching Covid”.
• Many caregivers were separated from their loved ones. This was especially hard during times when their care was needed most. 77% of caregivers say it was difficult when they “Could not be there in person to help the person in the hospital”.
• Caregivers already have a hard time getting the help they need, and the pandemic only worsened this issue. 75% of caregivers agree that “It was hard to find help” during COVID-19. 66% say that COVID-19 “Made it so nobody wanted to help me”.

Respondents have mixed expectations for caregiving after the pandemic is over. 40% believe that caregiving will be more difficult after the pandemic is over, while 48% believe it will be easier. As things open back up and we adjust back to ‘normal’, caregivers will continue to face challenges, but will hopefully be presented with new resources and perspectives from the pandemic.

Creating Change in Our Care Systems

Caregivers are necessary for our society to function; however, they cannot do their best without proper recognition and compensation. Providing universal and affordable care and recognizing the economic value of caregiving could transform the care systems that are currently in place. These solutions could not only change the lives of caregivers, but also society as a whole.

Farrah Karapetian’s is dedicated to bringing these issues to light through her work. She believes that C.A.R.E will “…make visible our present embodiment of care, which has the potential to inform the future.”

–

Thank you to Farrah and her collaborators for involving us in this project! For more insightful data that supports a societal cause, check out our previous lmpact Brief about a group of students who created an AI-powered chatbot app to help underprivileged groups gain access to mental health resources.

Share this article