Parent Cafe Study for Caregivers of Children with Medical Complexity
Research Question:
Thank you for your interest in this important research!
Past research has shown us that many parents and caregivers of children with medical
complexity feel isolated and have a higher risk for emotional challenges. That’s why
our goal is to start support group sessions for parents and caregivers of infants
with medical complexity with the hopes of improving and maintaining their emotional
well-being. In this research study, we will also interview and collect feedback from
caregivers of children (of all ages) to improve how we conduct these support group
sessions.
Basic Study Information
Purpose:
We started monthly peer and emotional support group sessions for caregivers of children
with medical complexity. We are looking for interested parents and caregivers to participate
in our research, attend support sessions, and provide feedback to improve them. A
child with medical complexity means that a child has/had 2 or more long-term diagnoses
and uses/used medical devices (like a feeding tube or tracheostomy).
Depending on the status and age of your child, you could either help us design the
support groups, lead the support groups, or participate in the support groups as an
attendee. Families with different diagnoses, outcomes, racial and ethnic backgrounds,
genders, sexual orientations, religions, geographic regions and physical abilities
all provide important insight and perspective. We are recruiting caregivers of children
who have fully recovered, have recovered with ongoing needs, are undergoing treatment,
or have passed away. Your lived experience and perspective matters.
Location: UR Medicine, Golisano Children's Hospital
Study Reference #: STUDY00008490
Lead Researcher (Principal Investigator)
Lead Researcher:
Nathaniel Bayer
Study Contact Information
Phone: (585) 233-0151
Email: Caregiver_Research@urmc.rochester.edu
Additional Study Details
Parking:
Reimbursed
Reimbursement:
Yes
Payment Details:
$50 for Attending each Advisory Group Meeting, $100 for Co-Leading each Support Group
Session and Providing Feedback, $100 for Attending each Support Group Session and
Providing Feedback.
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