0%

Please review the following information sheet before beginning this study.

University of Vermont

Information Sheet for Participation in a Research Study

 

Principal Investigator: Laura Lewis, RN, PhD

Study Title: Grounded Theory of Partners of Individuals with Autism Spectrum Disorder

Funding/Disclosures: This study has been funded by an Express Grant from the Office of the Vice President for Research (OVPR) at the University of Vermont. 

 

Introduction

You are invited to participate in a research study to explore the relationship experience of individuals who are partners of persons with Autism Spectrum Disorders (ASD). You are being asked to participate because you believe your partner has ASD.  You must have been in a relationship with this person for at least 1 year.  You do not still need to be in a relationship with this person, but you must have been in a relationship with this person within the last year. You may participate in this study if you believe that your partner has ASD.  Your partner does not need to be aware of your suspicion or be formally diagnosed with ASD for you to participate.  The term “Autism Spectrum Disorder” may include any of the following: Asperger’s syndrome, high functioning autism, pervasive developmental disorder, or classic autism.  You must be 18 years or older to participate in this study.

 

Why is this study being done?

I am a nurse and an Assistant Professor at the University of Vermont.  I am interested in exploring how partners overcome challenges within their relationships in couples living with ASD.

 

What are the study procedures?  What will I be asked to do?

If you agree to take part in this study, you will be asked to respond to questions about your relationship with your partner. For example, you will be asked to describe, “What do you love most about your partner?”  “What are the biggest challenges in your relationship?” Responses posted to this secure online survey will be SSL encrypted for your protection.  You will also be asked if you are willing to participate in a phone or email interview after you are finished with this survey.  The interview phase is also entirely voluntary and will not impact how your responses to this survey will be handled. 

 

The time required for this survey will vary, but will likely take about 30 minutes.

 

What are the potential risks or discomforts? 

We will do our best to protect the confidentiality of the information we gather from you but we cannot guarantee 100% confidentiality.  The questions may also cause discomfort, as questions will be asked about your personal relationship.  If you become upset or uncomfortable at any time, you are free to skip a question or to stop your participation.  If you do experience negative effects during or after your participation in the study, we encourage you to contact a mental health professional.  You may also find support through any of the organizations listed below:

About Mental Health
Suicide Support
Domestic Abuse Support
About Autism Spectrum Disorders

 

There is one exception to confidentiality that you should know about.  By law, it is our responsibility to report to the appropriate authority suspicion of harm to children or to others. However, we are not seeking this type of information in our study nor will you be asked questions about these issues.

 

What are the benefits of the study?

Although you may find it interesting to participate in this study, there will be no direct benefit to you from your participation.  It is our hope that your participation will benefit other partners of those with ASD by adding to the field of knowledge.

 

Will I receive payment for participation?  Are there costs to participate?

There are no costs and you will not be paid to be in this study.

 

How will my personal information be protected?

The following procedures will be used to protect the confidentiality of your data.  The researchers will keep all study records (including any codes to your data) locked in a secure location.   Research records will be labeled with numerical code based on how many individuals have participated (for example, 001, 002, 003…).  If you choose to provide any contact information for a follow-up interview, this information will be stored separately from your survey responses, also in a locked secure location, and in a separate password protected file.

 

At the conclusion of this study, the researchers may publish their findings.  Information will be presented in summary format and you will not be identified in any publications or presentations.  We will do our best to protect the confidentiality of the information we gather from you but we cannot guarantee 100% confidentiality.  The website where you can participate in this study is SSL encrypted.  Your confidentiality will be maintained to the degree permitted by the technology used.  Specifically, no guarantees can be made regarding the interception of data sent via the Internet by any third parties.  You should also know that the University of Vermont Institutional Review Board (IRB) may inspect study records as part of its auditing program, but these reviews will only focus on the researchers and not on your responses or involvement.  The IRB is a group of people who review research studies to protect the rights and welfare of research participants.

 

Can I stop being in the study and what are my rights?

You do not have to be in this study if you do not want to.  If you agree to be in the study, but later change your mind, you may drop out at any time by deleting any responses that you have entered.  There are no penalties or consequences of any kind if you decide that you do not want to participate.  You do not have to answer any question that you do not want to answer.

 

Whom do I contact if I have questions about the study?

Take as long as you like before you make a decision. We will be happy to answer any question you have about this study. If you have further questions about this study or if you have a research-related problem, you may contact me, the principal investigator: Dr. Laura Lewis at laura.lewis@med.uvm.edu or (802) 656-3601.  If you have any questions concerning your rights as a research participant, you may contact the Director of the Research Protections Office at the University of Vermont at (802) 656-5040.

 

I acknowledge that the information sheet has been made available to me and I consent to participate in this study.