Grief and Bereavement Experiences of Children with Intellectual Disabilities

Researchers at the University of Maryland are looking to understand how children with intellectual disabilities grieve the loss of a loved one.

Researchers are currently gathering information on how children with intellectual disabilities experience grief and loss.  This study is looking for parents or guardians of children living with Fragile X syndrome and/or other intellectual disabilities who have experienced the death of someone significant in their lives when they were 5-17 years old.

About the Study

Who can participate?

To participate in this study, you must be an adult (18 years +) and a parent/guardian of a child with FXS and/or other intellectual disabilities (ID), and your child must have been between 5-17 years old when they experienced the death of someone important in their life (such as a parent, sibling, grandparent, or friend).  Further study criteria states that the death of the child’s loved one should have occurred at least six months ago, and not more than three years ago.

What will happen in the study?

If you are interested in this study, the researcher will connect with you to schedule your appointment.  The appointment involves an interview between the primary guardian and the researcher that is conducted remotely, via video or phone call.  The interview lasts approximately one hour, but participants can spread the interview out over more than one sitting, if needed.  Participation in this research is anonymous.

There is an option in which participants can choose to include their child for a short portion of the interview, where their child will be asked several questions.  However, this is completely optional; your child does not need to participate in the interview for you to participate.

What are the good things that can happen from this research?

Though participants will not benefit directly from their participation in this study, they may find it meaningful to talk about their child’s experiences.  Participating in this study may contribute to the understanding of how children with intellectual disabilities cope with loss, so that we can learn how to best support other families in similar situations.

What are the bad things that can happen from this research?

There is a slight risk that talking about the subject of someone’s death can bring up uncomfortable feelings, though some people may find it meaningful to share their experiences.  Though protocols will be in place to protect the participant’s privacy and the confidentiality of their information, there is a slight risk of loss of confidentiality and loss of privacy.

There may be other risks that we do not know about yet.

Will I or my child be paid to complete this study?

Participants will receive a $25 electronic gift card as a “thank you” for their time and effort.

Interested in Participating?