About this Study

The purpose of the study is to better understand, through questionnaires and brief open-ended questions, the experiences of genetics patients and their parents or caregivers. This study also aims to assess families’ current understanding of trauma-informed care and perspectives on a new trauma-informed care protocol designed for pediatric medical genetics care settings.

Caregivers of children with genetic conditions will participate in an online survey about their experiences as a parental caregiver to a child with a genetic condition.

Following survey participation, caregivers will be invited to take part in optional follow-up interviews for themselves and the child they care for, for 60 minutes each, to further discuss their experiences and perceptions of trauma-informed care.

Mixed-method data will be analyzed both quantitatively and qualitatively to provide a comprehensive understanding of patient and caregiver experiences and perspectives.

Study Purpose

By understanding the perspectives of patients and families, the current research will help advance the knowledge of the acceptability and feasibility of trauma-informed care for medical genetics populations. This understanding will seek to inform change in how healthcare settings and doctors support patients and families.

Who Can Participate

• Parents of children with any CMT diagnosis (all CMT types are eligible) who meet the following criteria:
  • Survey:
    • Must be a parent or caregiver of a child with a genetic condition
    • English-speaking
    • Live in the United States
  • Interview:
    • Caregiver/parent participants must be:
      • A parent or caregiver of a child with a genetic condition
      • English-speaking
      • Live in the United States
      • Have completed the above mentioned survey before participation
    • Child participants joining their parent in interview must be:
      • Children with a genetic condition between the ages of 7 to 17

How to Get Involved

Participants are invited to take an online survey regarding their experiences and perspectives as a parental caregiver to a child with a genetic condition.

Zoom Interview

Parents/caregivers will have the option to opt in for a one-hour Zoom interview. In this interview, caregivers and children will be asked a series of open-ended questions by research personnel who have received relevant training in interviewing methodology with children and families and trauma-informed care.

Contact

If you have questions or concerns, please contact Eastern Michigan University’s study team directly at star_researchlab@emich.edu.