Information Sheet
The COVID-19 (or Coronavirus) has been spreading across the world. Many people have been infected, and unfortunately, many have not recovered. The uncertainty of our futures, and additional responsibilities can all lead to stress. This may be especially difficult for informal caregivers, that is, people who help their family members or friends in managing some health condition.
DESCRIPTION: You are invited to participate in a research study on your experience with taking care of a family member or friend during the current health crisis of COVID-19, also known as coronavirus. People who care for a family member or friend are often called “informal caregivers” or “carers” and provide various types of help including managing medications, running errands, managing diet, and providing support, usually without getting paid. For parents, we are interested in your experience if your child has a physical or mental health condition.
We will ask you to take an anonymous survey online. The questions will ask about the person you care for, what you have heard about COVID-19 (coronavirus), whether you have seen changes in your stress, and what has helped you cope with the stress. The information collected will improve our understanding of what it is like to be an informal caregiver during these types of crises.
WHO SHOULD TAKE THIS SURVEY: Anyone who is an informal caregiver or parent to someone with a physical or mental health condition is eligible to take this survey. *The person does not need to have COVID-19.*
TIME INVOLVEMENT: Your participation will take approximately 20 minutes.
RISKS AND BENEFITS: The risks associated with this study are limited. It is possible but unlikely that you will experience an increase in distress while reading the questions. A possible benefit is you gaining insight into your own stress levels and coping strategies. Society will benefit from the knowledge gained through this study. We cannot and do not guarantee or promise that you will receive any benefits from this study.
PAYMENTS: You will not receive payment for your participation.
PARTICIPANT'S RIGHTS: If you have read this form and have decided to participate in this project, please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. The alternative is not to participate. You have the right to refuse to answer particular questions. The results of this research study may be presented at scientific or professional meetings or published in scientific journals. Your individual privacy will be maintained in all published and written data resulting from the study.
If you are responding to this survey from within the European Union, you may have additional rights. You can learn more about these rights at the attached document (GPDR Consent Form).
CONTACT INFORMATION:
Questions: If you have any questions, concerns or complaints about this research, its procedures, or risks and benefits, contact the Protocol Director, Ranak Trivedi, PhD at ranakt@stanford.edu.
Independent Contact: If you are not satisfied with how this study is being conducted, or if you have any concerns, complaints, or general questions about the research or your rights as a participant, please contact the Stanford Institutional Review Board (IRB) to speak to someone independent of the research team at +1 (650)-723-2480 or email at IRB2-Manager@lists.stanford.edu, or toll free at +1-866-680-2906. You can also write to the Stanford IRB, Stanford University, 1705 El Camino Real, Palo Alto, CA 94306.
Please print a copy of this page for your records.
If you agree to participate in this research, please continue.
SCREENING: Caregivers are people who help their family members or friends in managing some health condition. This could be medical tasks (for instance, making sure they take their medications), lifestyle management (for instance, making sure they are following a low salt diet), emotional support (for instance, being a shoulder to lean on), or practical (for instance, running errands like groceries).
1. Are you a caregiver of a family member or a friend with a physical and/or mental health condition?
* must provide value
Yes
No
Unsure
2. Are you at least 18 years old?
* must provide value
Yes
No
3. Which country do you live in?
United States of America (USA) Afghanistan Albania Algeria Andorra Angola Antigua and Barbuda Argentina Armenia Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bhutan Bolivia Bosnia and Herzegovina Botswana Brazil Brunei Bulgaria Burkina Faso Burundi Cabo Verde Cambodia Cameroon Canada Central African Republic (CAR) Chad Chile China Colombia Comoros Costa Rica Cote d'Ivoire Croatia Cuba Cyprus Czechia Democratic Republic of the Congo Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Eswatini(formerly Swaziland) Ethiopia Fiji Finland France Gabon Gambia Georgia Germany Ghana Greece Grenada Guatemala Guinea Guinea-Bissau Guyana Haiti Honduras Hungary Iceland India Indonesia Iran Iraq Ireland Israel Italy Jamaica Japan Jordan Kazakhstan Kenya Kiribati Kosovo Kuwait Kyrgyzstan Laos Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Mauritania Mauritius Mexico Micronesia Moldova Monaco Mongolia Montenegro Morocco Mozambique Myanmar(formerly Burma) Namibia Nauru Nepal Netherlands New Zealand Nicaragua Niger Nigeria North Korea North Macedonia(formerly Macedonia) Norway Oman Pakistan Palau Palestine Panama Papua New Guinea Paraguay Peru Philippines Poland Portugal Qatar Republic of the Congo Romania Russia Rwanda Saint Kitts and Nevis Saint Lucia Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Slovakia Slovenia Solomon Islands Somalia South Africa South Korea South Sudan Spain Sri Lanka Sudan Suriname Sweden Switzerland Syria Taiwan Tajikistan Tanzania Thailand Timor-Leste Togo Tonga Trinidad and Tobago Tunisia Turkey Turkmenistan Tuvalu Uganda Ukraine United Arab Emirates (UAE) United Kingdom (UK) Uruguay Uzbekistan Vanuatu Vatican City (Holy See) Venezuela Vietnam Yemen Zambia Zimbabwe
4. In your country, which state/province/region do you live in?
5. Which state/province/region do you live in?
Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia (DC) Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming
6. Do you live in an urban area (a city), suburban, or rural area?
Urban
Suburban
Rural
Unsure
Male
Female
Transmale
Transfemale
Other
Prefer not to answer
9. What is your marital status?
Married/partnered
Separated/divorced
Widowed
Never married
Prefer not to answer
10. What is your ethnicity?
Hispanic or Latino
Not Hispanic or Latino
Prefer not to answer
American Indian or Alaska Native
Asian
Black or African American
Hispanic or Latino
Native Hawaiian or Other Pacific Islander
White
Prefer not to answer
12. Your religious background:
Atheist Agnostic Bahai Buddhist Chinese folk-religionist Christian Confucianist Daoist Ethnoreligionist Hindu Jain Jew Muslim New Religionist Shintoist Sikh Spiritist Zoroastrian Prefer not to answer
13. Your education (in years):
14. What is your highest level of education?
Some high school
High school/GED
Some college
Bachelor's degree
Postgraduate degree (e.g., MD, MS, MA, PhD)
Prefer not to answer
15. How many people besides you live in your household?
16. For how many children under the age of 18 years are you the caregiver? Fill in the blank with number. Use '0' if none.
* must provide value
17. For how many adults are you the caregiver? Fill in the blank with number. Use 0 if none.
* must provide value
18. What is your relationship with your care recipient?
Note: If you are a caregiver for more than one person, feel free to complete a separate survey for each person.
Spouse or significant other
Daughter
Son
Parent
Grandparent
Guardian
Other relative
Other non-relative
19. Do you live with your care recipient?
Yes
No
Unsure
20. How many hours of caregiving do you provide per week?
20 hours or fewer
21 - 39 hours
40 hours or more
21. Age of primary care recipient (in years):
0-4 5-9 10-14 14-17 18-25 26-35 36-45 46-55 56-65 66-75 76-85 86 or older
22. Your care recipient's gender:
Male
Female
Transmale
Transfemale
Other
Prefer not to answer
23a. If other condition, please specify:
24. What are all the things you help your care recipient with? Check all that apply .
24a. If other, please specify:
25. Have you heard about the infectious disease called COVID-19, also known as Coronavirus or SARS-COVID-2? Check all that apply.
25a. If other, please explain:
26. Please rate your agreement with this statement: Since the COVID-19 crisis, I have been worried about leaving the house because I will get infected.
Strongly Disagree
Disagree
Neither agree nor disagree
Agree
Strongly Agree
27. Please rate your agreement with this statement: Since the COVID-19 crisis, I have been worried about leaving the house because I will infect my care recipient.
Strongly Disagree
Disagree
Neither agree nor disagree
Agree
Strongly Agree
28. Which of these measures are you following to prevent the spread of COVID-19? (Check all that apply)
Note: Isolation separates sick people with a contagious disease from people who are not sick. Quarantine separates and restricts the movement of people who were exposed to a contagious disease to see if they become sick. These people may have been exposed to a disease and do not know it, or they may have the disease but do not show symptoms.
28a. If other, please explain:
29. Think of the person that you provide the most health-related care, then complete the sentence. Since the COVID-19 outbreak, I am spending time with them:
Same as before
More than before
Less than before
Unsure
30. If you are spending less time with them, are you doing something else to make up for this?
30a. If other, please describe:
31. Have you been tested for COVID-19?
Yes
No
Unsure
32. Have you been told you are required to self-isolate/quarantine?
Yes
No
Unsure
32a. (If yes) How has self-isolation / quarantine influenced your ability to perform caregiving tasks?
I have been unable to perform any caregiving tasks
I am able to perform less than half of my caregiving tasks
I have been able to perform most but not all of my caregiving tasks
I have been able to perform all of my caregiving tasks
33. Has your care recipient been told they should self-isolate/quarantine?
Yes
No
Unsure
33a. (If yes) During this period,
I have been unable to perform any caregiving tasks
I am able to perform less than half of my caregiving tasks
I have been able to perform most but not all of my caregiving tasks
I have been able to perform all of my caregiving tasks
34. Complete this sentence: As a result of COVID-19 outbreak, I have the:
Same income as before
Less income than before
More income than before
35. Without giving exact dollars, how would you describe your household financial situation right now? Would you say that:
After paying the bills, we still have enough money for the special things that we want
We have enough money to pay the bills, but little spare money to buy extra or special things
We have money to pay the bills, but only because we have had to cut back on things
We have difficulty paying the bills, no matter what we do
Prefer not to answer
Unsure
36. Complete this sentence: As a result of COVID-19 outbreak, I have:
No changes in my caregiving responsibilities
Increase in caregiving responsibilities
Decrease in caregiving responsibilities
37. Are you having to take on more childcare or other caregiver responsibilities right now?
Yes
No
37a. If yes, for how many kids? (Write 0 if none)
37b. If yes, for how many adults? (Write 0 if none)
38. Since I heard about COVID-19 I have enough supplies to provide care for myself and my loved one.
Yes
No
Unsure
39. Since I heard about COVID-19 I know how to find resources to care for my loved one.
Yes
No
Unsure
COMMUNICATION WITH HEALTHCARE:
40. Has the COVID-19 outbreak impacted your ability to communicate with providers?
Yes
No
40a. If yes, how has your communication with the provider been impacted? Check all that apply.
41. Have you contacted your care recipient's doctor or other healthcare provider to discuss their risk for COVID-19?
Yes
No
EMOTIONAL REACTION TO COVID-19:
42. What is your gut feeling about how likely you are to get infected with COVID-19?
Extremely unlikely
Very unlikely
Somewhat likely
Very likely
Extremely likely
43. How would you rate your risk of getting COVID-19?
1 (Lowest Risk)
2
3
4
5
6
7
8
9
10 (Highest Risk)
44. I worry about getting infected with COVID-19...
None of the time
Rarely
Some of the time
A moderate amount of time
A lot of the time
All of the time
45. How would you rate your anxiety about getting COVID-19?
1 (Low Anxiety)
2
3
4
5
6
7
8
9
10 (High Anxiety)
46. What are your concerns specific to COVID-19 regarding you and your care recipient? Options may include some of these (Check all that apply):
46a. If other, please explain: