Involving key stakeholders, like caregivers, in outcome measures and intervention design is essential for developing clinically meaningful and inclusive outcomes as well as treatment approaches by reflecting the needs and lived experiences of the populations being studied and empowering those directly impacted. During this symposium, presenters will explore how to develop measurement tools that capture the unique insights and experiences of caregivers of and self-advocates with fragile X syndrome (Paper 1), and review the user experience of pre-existing outcome measurement tools, which can significantly impact both research and clinical practices (Paper 2). Additionally, we will discuss how caregiver experiences can help shape more feasible and relevant interventions that address the diverse needs of autistic youth (Paper 3).
Chair: Sungeun Kang, University of Nebraska-Lincoln,
Discussant: Rebecca Shaffer,
First Presentation: Voices of Experience: Caregivers and Self-Advocates on Behavioral Inflexibility in Fragile X Syndrome
Angelina Jones, University of Minnesota, Sungeun Kang, University of Nebraska-Lincoln
Lauren M. Schmitt, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, College of Medicine
Rebecca Shaffer, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, College of Medicine
Craig A. Erickson, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, College of Medicine
Second Presentation: Voices of Change: Key Stakeholder Feedback to Improve Caregiver-Report Measures in FXS
Sungeun Kang, University of Nebraska-Lincoln, Angelina Jones, University of Minnesota
Rebecca Shaffer, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, College of Medicine
Craig A. Erickson, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, College of Medicine
Lauren M. Schmitt, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, College of Medicine
Third Presentation: Regulating Together: An Exploration of the Caregiver Experience in a Caregiver-Assisted Group Intervention
Jenna Ruberg, Cincinnati Children’s Hospital Medical Center,