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.
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.
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.
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.