Parent Cafe Study for Caregivers of Children with Medical ComplexityResearch Question:
Thank you for your interest in this 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
Basic Study Information
Purpose:Location: UR Medicine, Golisano Children's Hospital
We are starting peer and emotional support group sessions for caregivers of infants
with medical complexity. We are looking for interested parents and caregivers to participate
in our research and share their experience and perspective. 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.
Study Reference #: STUDY00008490
Lead Researcher (Principal Investigator)
Study Contact InformationPhone: (585) 233-0151
Additional Study Details
$50 for Attending each Interview or a Monthly Advisory Council Meeting, $100 for Co-Leading
each Support Group Session and Providing Feedback, $100 for Attending each Support
Group Session and Providing Feedback.
For those Co-Leading Support Group Sessions, there is also a required 3 day training
(8 hour days) February 6-8, 2024 which you would be paid $600.
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