Needs and Supports for Caregivers of Individuals with Dementia During the Covid-19 Pandemic                                                           

 

                                                           Informed Consent

 

INVITATION TO PARTICIPATE: Dear Caregiver, my name is Sean Griser and I am a Graduate Student in the Psychological Science program at California State University San Marcos. Together with my advisor, Dr. Sharon Hamill, we are inviting you to participate in a research study examining the current needs and use of support services or caregivers of individuals with dementia during the current Covid-19 pandemic and stay-at-home orders. You were selected as a possible participant because you are a caregiver of a family member with a diagnosis of dementia. Please read this form carefully and if you have any questions, please ask me before agreeing to be in the study. You must be 18 or older to participate in the study.                 

 

 

KEY INFORMATION ABOUT THIS RESEARCH STUDY: The following is a short summary of this study to help you decide whether to be a part of this study. Information that is more detailed is listed later on in this form. The purpose of this study is for researchers to better understand the current needs of caregivers and their access to and use of support during the coronavirus pandemic including how you now provide care, and the services that you are able to access and utilize. You will be asked to complete a 45 – 60 minute survey and will be given an opportunity to complete a 30 – 45 minute follow-up survey approximately one-month later, if you so wish. The primary risk of participation is fatigue in answering questions on the surveys. The main benefit is that you will learn more about the research process, and aid researchers by providing important information on the needs of caregivers during this pandemic.      

 

 

STUDY PURPOSE: The purpose of this study is to better understand how families have cared for loved ones with dementia during a pandemic. A great deal of research has been done on families living with and caring for member with a diagnosis of dementia, but we have just begun to examine how caregiving families are coping with the sudden and significant changes in our daily lives due to the pandemic.    

 

 

NUMBER OF PARTICIPANTS: If you agree to participate, you will be one of 160 – 500 caregivers who will be will be participating in this research.                   

 

 

PROCEDURES FOR THE STUDY: If you agree to be in the study, you will do the following: 
 

· You will be asked to respond to the initial survey that takes approximately 45 – 60 -minutes to complete.   

 

· You will provide information about your loved one who suffers from dementia (e.g., emotions and behaviors) and some questions about you and your activities (e.g. employment, contact with support for family caregiving, and emotional and physical well-being).   

 

 

· You will be also be asked to respond to questions regarding your basic demographics (e.g., age, ethnicity, income), as well as Covid-19 related health topics.

 

 

· Depending on your preference, the survey will either be conducted through a secure, online link to the survey, over the phone, or through a video-chat with the researcher.       

 

 

· Upon completion of the survey, you will be asked if you are willing to complete a second survey approximately one-month later. If you agree, the researcher will contact you to set up the second survey (online, over the phone, or via video chat). 

 

 

 

 

 

 

 

RISKS AND INCONVENIENCES: There are minimal risks and inconveniences to participating in this study. This may include:  

 

 

1. Fatigue or boredom associated with taking the surveys 

 

2. Some questions in the survey may be upsetting or cause emotional distress 

 

3. Time inconvenience.     

 

 

SAFEGUARDS: To minimize these risks and inconveniences, we have designed the study in the following way: 

1. If you feel boredom or fatigue when responding to the online surveys, you can take small breaks while responding to the questions, and you are able to pick up right where you left off in the survey when you are ready to return. The only requirement is that you finished the survey on the same day on which it was started. Further, these surveys can be completed at a time that is convenient to you, and can be taken in a private location (i.e., your own home). If you choose to complete the survey on the phone or via video chat, you just need to tell the researcher that you need to take a break, and make arrangements to complete the survey later that same day.      

 

 

2. If you feel uncomfortable answering questions, you may skip that question entirely, or come back to it at any point when taking the survey. There is no penalty for skipping questions. Further, at the end of the survey we provide you with a link to resources for caregivers and your loved ones.If a question that you come across during the survey causes emotional distress, please contact one of these clinics or hotlines.       

 

 

3. We have done our utmost to limit the time necessary to complete the study, to make participation as easy and as quick as possible.     

 

 

CONFIDENTIALITY: Your responses to the surveys will be kept confidential. We will collect the following information from you: Name, e-mail address, phone number (if you prefer to complete the study by phone), mailing address (if you choose to receive debrief form via USPS) and age. However, only the primary researchers conducting this study will have access to this information. All names and identifying information will be separated from all data collected in surveys after we have collected the data in full. Thus, identifying information will be removed prior to data analysis. The results from this study may be used in reports, presentations, or publications. However, your name will not be used or reported in any of these forms of research. The data will be saved on programs that are password protected. This will help to ensure that only the primary investigator and faculty advisor will be able to match participant names to your data. The identifying data will be retained for up to 3 years after the project is completed and will then be disposed of after this period of time (e.g. any paper records with identifying information will be shredded, and the digital files containing your identifying information will be erased from computers permanently).              

 

 

VOLUNTARY PARTICIPATION: Taking part in this study is voluntary. You may choose not to take part or may leave the study at any time. Leaving the study will not result in any penalty. Your decision whether or not to participate in this study will not affect your current or future relations with California State University San Marcos.             

 

 

BENEFITS OF TAKING PART IN THE STUDY: There are no other direct benefits to participation in this study; however, your participation will help researchers understand how families are dealing with the Coronavirus pandemic and supportive services can best serve people in their communities.   

 

 

PAYMENT OR INCENTIVE: You will be enrolled into a drawing for one of four  $25 dollar gift cards. Gift card recipient names will be drawn at the conclusion of the study and they will be notified by email.  We estimate that the drawing for the gift cards will be conducted between June – August of 2021.

 

 

CONTACT INFORMATION: If you have questions about the study, please call me, Sean Griser, at (760) 888-7064 or e-mail me at grise001@cougars.csusm.edu. You may also contact Dr. Sharon Hamill at shamill@csusm.edu or (760-750-8029). You will be given a copy of this form for your records. If you have any questions about your rights as a participant in this research or if you feel you have been placed at risk, please contact the IRB Office at irb@csusm.edu or (760) 750-4029.