Examining the Social and Emotional Impact of COVID-19 on the Cancer Community
As the COVID-19 pandemic persists, many cancer patients and survivors continue to experience mental health stressors, including anxiety and depression. COVID-19 has proven to be a threat to the mental well-being of all people, but cancer patients and survivors have unique needs and concerns.
Evidence regarding the short- and long-term effects of the pandemic on people impacted by cancer is evolving. The COVID-19 and Cancer Coalition is a group of over 30 key cancer patient and provider organizations that works to understand the pandemic’s effects on the cancer community. The coalition met recently to discuss the ongoing impact of COVID-19 on cancer patients and survivors’ social and emotional (psychosocial) well-being. The coalition also discussed ways they are working to help ease the psychosocial burden on communities they serve.
COVID-19 Concerns on Emotional and Social Well-being
Cancer Support Community COVID-19 and Cancer Study
The Cancer Support Community’s ongoing study investigates the impact of COVID-19 on cancer patients’ and survivors’ physical, social, and emotional well-being. It also looks at any disruption or delay to their cancer-related health care during the pandemic and examines patients’ and survivors’ primary fears and concerns now and in the future.
The study is currently in the fourth wave of data collection. It has already revealed many important insights into the pandemic’s continued impact on the mental well-being of people with cancer and how the impact has changed over the past year. The top 3 concerns reported by patients and survivors have remained the same since the start of our data collection. However, these concerns are decreasing from wave to wave. The top 3 concerns are:
- Others’ lack of adherence to safety recommendations when in public (such as wearing a mask)
- Getting sick because I am a cancer survivor or patient
- Worrying about a loved one’s health
Elevated anxiety and depression were highest at wave 1 (collected between September and December 2020). Recent data shows that anxiety and depression seemed to be decreasing at wave 2 (collected between March and April 2021) and then got slightly worse at wave 3 (collected between June and July 2021).
Additionally, COVID-19 appears to have had a greater impact on those in active cancer treatment. Survey participants who are currently in cancer treatment expressed more concerns about COVID-19, more anxiety, and more depression.
OncoLink COVID-19 Patient and Caregiver Survey
OncoLink, a leading provider of oncology education, conducted a survey between April and June 2020 that looked at the pandemic’s impact on mental health, financial stress, and food insecurity on cancer patients and their caregivers. Christina Bach, OncoLink’s Psychosocial Content Editor, shared that the findings suggest mental health is closely related to social isolation and may be worsened by financial stress and the ability to pay for food and cancer treatment.
Over 75% of survey respondents reported feeling more socially isolated since the pandemic started. Further, those who reported feeling more socially isolated were also more likely to report an impact on mental health, such as changes in mood, increased worry, and sleep disruptions.
Survey respondents who indicated that COVID-19 had impacted their mental health were also more likely to report financial stress, including:
- Job loss
- Reduction in pay and/or hour
- Ability to pay monthly expenses
- Ability to access and pay for medications/treatments
OncoLink’s survey also looked at how the pandemic has impacted the ability of cancer patients to safely access food, potentially exacerbating their risk for malnutrition and impacting their cancer treatment outcomes. Over half of respondents reported difficulty getting groceries, and 45% indicated being fearful of going grocery shopping due to being high risk for severe COVID-19. Accessing food does appear to have become easier as the pandemic has continued. However, for individuals with limited income, food delivery can still pose an economic challenge.
Responding to the Increased Need for Social and Emotional Support
The insights and findings from the studies by CSC and OncoLink highlight the need for increased social and emotional support for patients facing cancer during the pandemic. Aicha Diallo, Senior Director of CSC’s Cancer Support Helpline, shared with the coalition the ways the Helpline has responded to the increased needs of patients, survivors, and their families during the pandemic, including:
- Extending Helpline hours on the weekends
- Implementing video calls and a chat feature
- Providing navigation services in over 200 languages using medical translation services
- Providing assistance benefits to economically distressed individuals in 2020
In 2020, the Helpline saw an 80% increase in the number of calls and chats it received. Aicha explained how callers could speak to community navigators and resource specialists and get free, personalized navigation services on a variety of topics. This includes information about housing, coping with emotions, financial challenges, and medical complications.
Using CSC’s Distress Screening Tool, specialists can identify important concerns and unmet needs. In turn, they can provide enhanced navigation for those who need additional follow-up and support or are at risk for significant depression and anxiety.
We will continue to share important information about the COVID-19 and Cancer Coalition with the cancer community. If you have any questions or would like more information about the coalition, please contact email@example.com.