Study Title: Quality of Life of Parents of Children 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 Applied Clinical Psychology.
I am asking you to participate in a research study about the quality of life of parents of children with Autism Spectrum Disorder (ASD) and to determine whether specialized professional and formal support is needed to address the various factors impacting the quality of life. You will be asked to complete a survey about the quality of your life and the impact of your child’s ASD symptoms, as well as the services that your family currently receives. This will take around 10 minutes to complete through Survey Monkey. This may cause you to feel emotional distress or upset, and your confidentiality may be at risk. Although you may not benefit, it will help professionals gain a deeper understanding of the unique needs of parents with children with ASD and the needed formal support to enhance their quality of life.
Please take your time to read the entire document and feel free to ask any questions before agreeing to this document.
Purpose: The purpose of this study is to explore the components that contribute to the quality of life for parents of children diagnosed with Autism Spectrum Disorder (ASD) and to determine the types of formal support that are necessary to enhance their overall well-being. By addressing these needs, the study seeks to provide insights for developing targeted interventions and improving support systems for families affected by ASD.
Procedures: During this study, you will be asked to complete a survey, which includes questions regarding demographics, perception of quality of life, and the impact of your child’s ASD symptoms. This survey will take around ten minutes to complete through Survey Monkey.
Risks to Participants: The risks of study participation include emotional distress and upset, as well as the potential loss of confidentiality. Reflecting on your quality of life and your child’s ASD symptoms may evoke feelings of sadness, frustration, or stress. To minimize distress, you will be informed in advance about the nature of the questions and will have the option to leave the survey at any time. As emotional distress may be a potential risk in this study, you will be provided with national counseling resources should you wish to access support. These resources include the 988 Suicide & Crisis Lifeline (call or text 988 or visit 988lifeline.org), FindTreatment.gov (www.findtreatment.gov), and the Disaster Distress Helpline (call or text 1-800-985-5990 or visit www.samhsa.gov/find-help/disaster-distress-helpline). You may choose to contact these services if you experience any emotional discomfort or need assistance during or after your participation in the study. The risk of loss of confidentiality will be minimized by securely storing data on my password-protected computer, with access limited to my chair and me.
Benefits to Participants: You will not benefit from this study. However, I hope the information learned from this study may benefit society in our understanding of the needs of parents of children diagnosed with ASD and provide insight into developing targeted interventions and support systems for families affected by ASD.
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 your age, ethnicity, age of your child with ASD, gender of both you and your child, and relationship to the child.
Data collection and analysis of the data will be password protected on my computer and I will be the only one to have access to the SurveyMonkey account. Only my chair and I will have access to the data. In addition, per American Psychological Association (APA) guidelines, all research materials will be kept for a minimum of five years after the publication of this dissertation.
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.
Your research records may be reviewed by federal agencies whose responsibility is to protect human subjects participating in research, including the Office of Human Research Protections (OHRP) and by representatives from The Chicago School Institutional Review Board, a committee that oversees research.
Questions/Concerns: If you have questions related to the procedures described in this document please contact the researcher: Ann Cho (acho2@ego.thechicagoschool.edu) or the Dissertation Chair: Dr. Kim Dell’Angela, Ph.D. (KDellAngela@thechicagoschool.edu)
If you have questions concerning your rights in this research study you may contact the Institutional Review Board (IRB), which is concerned with the protection of subjects in research projects. You may reach the IRB office Monday-Friday by calling 312.467.2335 or writing: Institutional Review Board, The Chicago School, 325 N. Wells, Chicago, Illinois, 60654.