Thank you for your interest in participating in our pilot study. We are building off data from previous focus groups with families to develop an education program for family members that will help them better support the self-determination of their member with a disability. Self-determination involves people taking the degree of control they desire over those parts of their life that are important to them. The Institute has developed a program and would like to see if it helps people with disabilities and their family members.
If you are interested in helping the Institute, you will be asked to take part in a pilot study of a family- based self-determination education program. This pilot study will help us better understand if families think that the program we have developed will be useful to family members and people with disabilities. If you agree to take part in this study:
(1) You and your family will meet via online webinars once a week for approximately one hour with 3 to 4 other families over 4-6 weeks. During this time everyone will learn about self- determination and how to best support it;
(2) Before the focus groups start, you will be asked to complete a demographics questionnaire and a pretest questionnaire.
(3) When all focus groups are complete, you will be asked to complete a feasibility/usability questionnaire and a posttest. We are most interested in the following: (a) What you liked about the session and think you might find useful to your family; (b) What you did not like and do not think would useful; and (c) What you think should be changed;
Taking part in this study will take about 6-8 hours of your time over a period of about 4-6 weeks and is voluntary. You do not have take part and will not be paid for the help you provide. However, you will be assisting staff at the Institute to develop a better self-determination support program for families.
If you do not wish to take part in this study it will not affect your relationship with our organization or the University in any way. This is something you will be doing because you personally want to help the researchers, who are working to improve quality of life of people with intellectual disabilities.
If you would like to take part in this study, or need further information, please contact the people from the University listed below. They will answer any questions you might have and let you know the next steps if you decide to help them in their work.
Brian Abery, Ph.D., Project Director Phone: 612-327-3678
Renata Ticha, Ph.D.