Caregiver Survey

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Vanderbilt has recently received Institutional Review Board (IRB) approval to conduct a survey study. As a result, they are currently seeking primary caregivers of individuals who have complex communication needs. The goal is to gather primary caregivers' perspectives on the training received (if any), to support and enhance their child's communication skills. By gathering information and variables that lead to positive and negative experience we hope to make recommendations and to outline key elements to minimize experiences that may be contributing to high levels of communication system abandonment and decrease the impact these systems may have on the family. 

The survey will take approximately 20-30 minutes to complete. All responses are confidential. Only the principal investigators will have access to the completed surveys. If you are willing to participate, click the link at the end of this email to access the consent form and please complete the survey entirely. For your convenience, we have set the survey so that you can stop and come back to it at any point (by clicking "save and return later"). There is no compensation for participation in this survey; but we appreciate your time and willingness to help us learn from you.

For your information, below we have provided some additional details on the study
  • Description of the discomforts, inconveniences, and/or risks that can be reasonably expected as a result of participation in this study: There are no known risks or major inconveniences involved as a result of participating in this study. The only foreseeable inconvenience pertains to the time commitment involved in taking this survey. 
  • Good effects that might result from this study: We anticipate that information gained will describe the perspectives and expectations of parents on the training they have received to effectively support their child with complex communication needs. The information gained will help guide professionals in planning and designing future training opportunities that meet primary caregivers' needs.
  • What happens if you choose to withdraw from study participation: There will be no consequences if you choose to withdraw from participating in the survey prior to its completion. To withdraw from the study, close your internet browser window at any point prior to submitting the survey. 
  • Confidentiality: All efforts will be made to keep the personal information in research records private and confidential by numerically coding all questionnaires. The principal investigators will be the only people with access to the codes. All information and data collected for the study will be stored in a locked cabinet in Dr. Da Fonte's office, when not actively used for research purposes. All surveys and related data will be kept for 3-years after submission of the study manuscript for publication and will be destroyed after 3-years. 
If you have any questions about this research study, please contact Emily Sheridan at: emily.sheridan@vanderbilt.edu or Dr. Alexandra Da Fonte at alexandra.dafonte@vanderbilt.edu. For additional information or to report concerns, please feel free to contact the Vanderbilt University Institutional Review Board Office at: 615.322.2918 or toll free at: 866.224.8273.
Thank you for your willingness to consider participating in this project.
 
Survey link: https://redcap.vanderbilt.edu/surveys/?s=WXPHC39FMJ