The Impact of Social Support on Quality of Life for Spousal Caregivers of People with Multiple Sclerosis

Introduction

You have been invited to participate in a research experiment titled “The Impact of Social Support on Quality of Life for Spousal Caregivers of People with Multiple Sclerosis.” This study is being conducted by Camille Simonetti under the supervision of Dr. Gloria Lee in the Department of Counseling, School, & Educational Psychology, University at Buffalo.

This research study is intended for adult participants who are 18 years of age and over. If you are not yet 18, please do not participate in this study.

Volunteer Status
Your participation is voluntary and will have no effect on the quality of your medical care if you choose not to participate. You do not have to answer every question and may refuse to answer any questions that you do not want to answer. Your participation in this study is voluntary and you may stop your participation at any time without prejudice and without affecting future health care. If you choose to withdraw from this study, or if the investigator withdraws you from the study, no further information will be collected from you or about you. You should know, however, that the information collected about you up to the time of your withdrawal may continue to be used. They survey is set up so that no data will be saved until you click on the submit button.

Purpose
The purpose of this study is to investigate the factors that influence and moderate caregiver quality of life; specifically social support. The study will utilize a Risk-Resistance Adaptation model to see how resilience and risk factors influence the quality of life of caregivers. The model will allow for various risk and resistance factors to be measured at the same time. The Risk-Resistance Adaptation model will also investigate the complex interactions of risk and resistance factors that account for overall spousal caregiver quality of life.

The study is designed to recruit participants online for a total of 150 caregivers who take care of their spouse with Multiple Sclerosis. The data will be collected through the SurveyMonkey© online. The list of online sites that will be recruited from includes: Caring Today, Daily Strength, Family Caregiver Alliance, Multiple Sclerosis Association of America, Multiple Sclerosis Caregiving, Multiple Sclerosis Foundation, MS Friends, Multiple Sclerosis International Federation, Nation Family Caregivers Association, and the National Multiple Sclerosis Society. Participants will also be recruited from the Erie County Senior Services support groups via email link. The procedures, recruitment, risks, benefits, consent process, and compensation are all the same for these sites.

Procedure
Participants who see the advertisement (Appendix A) will be provided the direct weblink to the online survey. In Appendix B, it is explained that if participants are interested in taking part in this survey after reading the advertisement, they can get access to the weblink itself where the first page will explain the necessary information for clients (Appendix B). If participants consent to participate, they will proceed with the survey. Inventories will be completed on different factors: a) disability variables, b) patient demographic variables, c) caregiver demographic variables, d) caregiver strain, e) social support, f) caregiver needs, and g) caregiver quality of life. The principal investigator and her supervisor will be responsible for data analysis, write up and dissemination of data in group formats for conference and publications. Participants are asked not to put their names or address (identifying information) anywhere in the survey. However, there may be other potential identifying information (e.g. age, occupation, where they are from) that put together may allow others to identify the participants. Although unlikely, none of that information will be shared with others beyond the principal investigator and the advisor.

Time Commitment
Your participation in this study will take approximately 60 minutes.

Risks
There are three potential risks that are associated with participation: emotional distress, physical fatigue, and possible breach of confidentiality. In order to address the potential fatigue, you can take a break from the survey. Please keep the link that leads you to the survey. If you choose to return and complete the survey later, you can click the same link and it will lead you back to where you left off. SurveyMonkey© utilizes a secure sockets layer encryption, and it is a protocol initially developed for transmitting private documents or information via the Internet. It essentially works through a cryptographic system that secures a connection between a client and a server. Many websites use this protocol to obtain confidential user information and it is supported in all modern browsers. SurveyMonkey© also allows the researcher to disable the storage of email addresses and disable IP address collection for all collection methods so that they can collect anonymous survey responses. Any identifiable information (in this case an IP address), will not be part of the information that is downloaded by the primary investigator. Therefore, the primary investigator does not have access to any IP address that could track back to which computers or emails the surveys were from.

In order to prevent any potential emotional distress generated as a result of completing this survey, I would encourage you to: 1) discontinue the survey immediately if you feel distressed. Information will be deleted so that no traces of any items will be saved and used. 2) contact myself and/or my supervisor (see my phone and e-mail at the end) or seek professional assistance from your local service provider; 3) a list of community mental health services (both national and online) will be provided at the beginning of the survey in case you require some professional assistance. You are encouraged to keep the list of resources available. The list will appear after you have read the informational sheet as well as after you have completed the survey. I would encourage you to be aware of the numbers and weblinks first before you start the survey so that you can have the numbers to call if you need some professional assistance any time. I therefore encourage you to print out this list of resources. If someone exits the survey before the end, the resource list will appear as well.

In order to protect your privacy and confidentiality, please do not write any identifiable information such as your name in any where of the survey. In addition, the computer that is used to collect this survey is password-protected, locked in the office of the researcher and is only accessible to the researcher. The software used to collect this survey is also accessible by password only. Finally, the software also has a built-in feature where information will be encrypted, meaning that other people cannot trace back the information by using the “back” button.

Benefits
There are no immediate benefits of caregivers of Multiple Sclerosis patients by participating in this study. However, results of their participation will provide invaluable information and research to support the stress faced by caregivers who take care of their family member who has Multiple Sclerosis.

Payment: There is no cost to you for participation in this research. There is no compensation provided for participation in this study.

Confidentiality
Information related to you will be treated in strict confidence to the extent provided by law. Your identity will be coded and will not be associated with any published results. Your code number and identity will be kept in a locked file of the Principal Investigator.

Participants are advised not to type any names or identifiable information in the online survey itself. In addition, the weblink where the researcher will be able to access is pass-word protected. The work computer that is used to download the survey is also password-protected. Finally, the weblink also has the encrypted feature so that using the back tracking button cannot allow previous information to be reviewed. This process is also explained in the information sheet.

In order to monitor this research study, representatives from federal agencies such as NIH (National Institutes of Health) and OHRP (Office of Human Research Protection) or representatives from the UB Human Research Protections Program may inspect the research records. This process may reveal your identity.

Your participation in this study is voluntary and you may stop your participation at any time without prejudice and without affecting future health care. If you choose to withdraw from this study, or if the investigator withdraws you from the study, no further information will be collected from you or about you. You should know, however, that the information collected about you up to the time of your withdrawal may continue to be used.

For Further Information
Any questions, concerns or complaints that you may have about this study can be answered by Camille Simonetti. Ms. Simonetti and Dr. Lee can be reached through the Department of Counseling, School & Educational Psychology, University at Buffalo, Amherst NY 14260 or by telephone at (716)-645-1123.

If you have any questions about your rights as a participant in a research project, or questions, concerns or complaints about the research and wish to speak with someone who is not a member of the research team, you should contact (anonymously, if you wish) the Social and Behavioral Sciences Institutional Review Board, 515 Capen, University at Buffalo, Buffalo, NY 14260, e-mail SBSIRB@research.buffalo.edu, phone 716 / 645-6474.

By answering questions in this survey and submitting them to the researcher, you are verbally consenting to participate in this project.