Informed Consent
Investigator: Leyla Rakshani
Study Title: Self-Esteem, Familial Perception, and Social Satisfaction Among Adult Siblings of Individuals with Autism Spectrum Disorder
I am a student at The Chicago School. This study is being conducted as a part of my dissertation requirement for the Clinical Psychology Psy.D. program.
I am asking you to participate in a research study about how growing up with a sibling diagnosed with autism spectrum disorder may impact perspectives of the self, the family, and other people. You will be asked to complete a survey regarding self-esteem, your relationship to your family, and your social satisfaction. This will take approximately 30-45 minutes to complete. This may cause emotional discomfort, such as sadness or anxiety, and your confidentiality may be at risk. Although you may not benefit, it will help to understand how siblings of individuals diagnosed with autism spectrum disorder are affected in adulthood.
Please take your time to read the entire document and feel free to ask any questions before signing this document.
Purpose: The purpose of this study is to examine how growing up with a sibling diagnosed with autism spectrum disorder may impact perspectives of the self, the family, and other people. By examining this population, we hope to learn more about how they can be further supported as adults.
Procedures: During this study, you will be asked to complete a survey. The survey will begin with a demographic questionnaire and will be followed by screening questionnaires. You will be asked to complete a survey regarding self-esteem, your relationship to your family, and your social satisfaction. This will take approximately 30-45 minutes to complete.
Risks to Participants: Participants may experience emotional discomfort upon completing the survey. This may include anxiety and sadness. Counseling resources will be offered in the debriefing statement at the end of the survey to help manage emotional discomfort. Participants’ confidentiality may also be at risk; this risk will be minimized by not collecting any directly identifiable information and collected data will be kept on a password-protected computer that only the researcher and the researcher chairperson will have access to. In addition, the data will be kept for five years and then destroyed by deleting the files from the computer.
Benefits to Participants: You will not directly benefit from this study. However, we hope the information learned from this study may benefit society in our understanding of how siblings of individuals diagnosed with autism spectrum disorder differ from the general population.
Alternatives to Participation: “Participation in this study is voluntary. You may withdraw from study participation at any time without any penalty.”
Confidentiality: During this study, information will be collected about you for the purpose of this research. This includes demographic information and responses to the following questionnaires: Rosenberg Self-Esteem Scale (RSE), Brother-Sister Questionnaire (BSQ), Brief Family Relationship Scale, & Multidimensional Scale of Perceived Social Support (MSPSS).
Responses will be anonymized such that IP Addresses, location data, and contact information will not be gathered. Names will also not be gathered in this study. Information gathered from the surveys will be kept on a password-protected computer that only the researcher and dissertation chair will have access to. Data will be kept for a minimum of five years after publication of the study per APA guidelines. After which, data will be destroyed by deleting the files from the computer.
It is possible that your data may be used for future research or distributed to another researcher without your consent. However, information that could identify you will be removed.