This is a research study that uses a survey to ask questions about the non-medical services (i.e. therapy, financial support, social support) that you and your family received after your child experienced amputation. It also asks about the types of services that you wished you had received after the amputation. During the research process if the participants learn of a new service or resource that they did not know of before, they may be able to use this newly recognized resource to better the recovery process for the child who has undergone amputation. An additional benefit is that the information from participants in this research will improve the system of care given to children with limb loss. The questions on the following pages will address these two topics and the entire survey will take about 15 minutes to complete.
It is important to know that your participation is completely voluntary. You may refuse to participate or withdraw from the survey at any time; there are no penalties, or loss of benefits to which you are otherwise entitled, for doing so. You must be 18 or over and the parent or legal guardian of a child who has experienced limb loss.
The information collected in the survey will be completely anonymous. However, at the end of the survey you will be asked if you are willing to participate in a short (15-20 minute) phone interview about your family’s experiences with the non-medical services you received. If you indicated an interest in being interviewed we will ask for your name, phone number, email address, and times that would be convenient for the interview. If you agree to a follow-up interview and provide contact information, this information will be stored separately from the online survey responses. After the interviews all identifiers will be removed from the data and permanently destroyed. At no time will your identity be associated with the online survey responses or the telephone interviews. This identifying information will be destroyed after the interview and will never be connected in any way to the answers you provide on the questionnaire or interview. We will work to make sure that no one sees your survey responses without approval. But, there is a small possibility that an unauthorized person could access your online responses. In some cases, this information could be used to identify you. Your data will be encrypted to reduce the risk that unauthorized persons can view the information.
For questions about the research, complaints or if you feel you have been harmed by participation, you may contact Denise Bronson at 614-292-1867. For questions about your rights as a research participant, or to speak with someone who is not a member of the research team, you may contact Ms. Sandra Meadows in the Office of Responsible Research Practices at 1-800-678-6251.
Thank you for your participation.
Sincerely,
Denise E. Bronson, Associate Dean & MSW Program Director
Katie Eickholt, BSSW student
