C. Consent Form

Appendix C: Consent Form

Institute for Clinical Social Work Research Information and Consent for Participation in Social Behavioral Research [Experiences of Parents from West Africa Caring for Children with ASD]

I, , acting for myself, agree to take part in the research entitled The Experiences of West African immigrant parents caring for their children with Autism Spectrum Disorders (ASD).

This work will be carried out by Hannah Anokye (Principal Researcher) under the supervision of Dr. Jacquelyn Vincson.

This work is being conducted under the direction of the Institute for Clinical Social Work; At Robert Morris Center, 401 South State Street; Suite 822, Chicago, IL 60605; (312) 935-4232.

Purpose

The purpose of this study is to understand the caregiving experiences of immigrant parents from West Africa living in the United States and are caring for their children with Autism spectrum disorders (ASD).

More specifically, this study seeks to learn how caregiving experiences have impacted parents and their parenting abilities as they care for a child with ASD. It is anticipated that the result of this study will help other West African parents who are caring for their children with ASD. In addition, the study will help clinicians working with West African families in their caregiving practices with their children with ASD.

Procedures used in the study and duration

You are one of five parents from any of the 16 West African countries who meet the criteria of parenting a child with ASD. I will conduct two interviews with you and the other parents. The first interview will be face-to-face; however, I will be flexible about what is most comfortable for you if it is by person or phone. The first interview last 90 minutes and the second interview is anticipated to last for 60 minutes. The interview will consist of questions about caring for a child with ASD. We will talk about your supports and strengths in caring for your child. Also discussed will be how caring for your child impacts your family. You will be able to talk about any resources or services available to you and supports you need. The interviews will be recorded with your consent. They will be transcribed and you and your family will not be identified in any way. The interviews and transcripts are confidential. Only myself and my research committee at ICSW will have access to your information.

Describe any monetary costs to the participants

The cost involved with travel for participants will be minimal. Researcher plans to meet with participants at a place convenient or their homes for interviews. Fuel cost, personal and public transportation will not be paid by researcher.

Benefits to Your Participation

There are no specific benefits to you by your participation in this research. It is hoped that your participation will help other West African parents caring for children with ASD. It will also help providers who work with West African parents.

Possible Risks and/or Side Effects

Although it is not anticipated that there may be potential risk in the study, there is the need to take precaution should there be potential risk, for example discussing the experiences of the parents may bring up some negative emotional responses. If you are feeling distressed and need to stop the interview or talk to someone, you are free to do so. Researcher will give you a list of three or four counselors in the Greater Chicago area. Also, a list of people or places that are culturally relevant will be made available to you. Additionally, a list of local and national resources about ASD, contact for community leaders and Autism places will be given to you.

Privacy and Confidentiality

The information from of this study will be kept private and the confidentiality of the data will be protected. In any sort of report made public, your identity will not be disclosed or made public. The interview data will be kept in a secured place such as a locked file; My committee and I will be the only ones to have access to the records. The tape record of the interview will be destroyed after it has been transcribed and analyzed.

Subject Assurances

By signing this consent form, I agree to take part in this study. I have not given up any of my rights or released this institution from responsibility for protection.

I may cancel my consent and refuse to continue in this study at any time without penalty or loss of benefits. My relationship with the staff of the ICSW will not be affected in any way, now or in the future, if I refuse to take part, or if I begin the study and then withdraw.

If I have any questions about the research methods, I can contact Hannah Anokye at (708) 699-5521 or Dr. Jacquelyn Vincson at (708) 351-3142.

If I have any questions about my rights –– as a research subject, I may contact Dr. John Ridings, Chair of Institutional Review Board; Institute for Clinical Social Work; At Robert Morris Center, 401 South State Street; Suite 822, Chicago, IL 60605; email: irbchair@icsw.edu.

You will be given a copy of this form to keep for your records.

Signatures

I have read this consent form and I agree to take part in this study as it is explained in this consent form.

Signature of Participant______________________ Date__________________I certify that I have explained the research to (Name of subject) and believe that they understand and that they have agreed to participate freely. I agree to answer any additional questions when they arise during the research or afterward.

Signature of Researcher__________________ Date____________________