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Parent Cafe Study for Caregivers of Children with Medical Complexity

Research 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 sessions.

Basic Study Information

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.

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

Additional Study Details

Parking:  Reimbursed
Reimbursement:  Yes
Payment 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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