Lived Experience Boosts Research at Gillette

Kari Pederson, MSW, LICSW, is collaborating with Gillette’s research team to bring her personal experience and perspective to learnings that help inform care and reduce falls for children and adults who have cerebral palsy (CP). Pederson is serving as a Lived Experience Partner (LEP) as part of Gillette’s Family Engagement in Research (FER) initiative. She helped co-produce Gillette’s Consequences of Falls research study, and will represent Gillette to present on the study at the 2024 American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) this fall.

The abstract “What Can Families, Society or Healthcare Systems Do to Reduce Concerns About Falling: Understanding the Lived Experience of Children and Adults with Cerebral Palsy Using a Phenomenological Approach,” received aTop 10 nomination out of 640 submissions.

Outside of her roles at Gillette, Pederson is a Gillette adult services patient and a clinical social worker who has devoted her career to families, children, and adults with special health care needs. As an LEP who has cerebral palsy (CP), she brought her unique experience to the Consequences of Falls study. Her participation – and that of other LEPs – not only improved the quality of the data analysis but also gave Gillette researchers and clinicians insights that will inform future research and clinical care. 

Through her presentation at the AACPDM conference, Pederson says, “I, as an adult living with CP, will now be a direct voice for hundreds of others with CP. In their own words, Gillette patients and parents caring for a child with CP get to share about what they need to reduce fall concerns and make the world safer for children and adults with CP.” 

The Consequences of Falls research study was driven by the desire to better understand the high frequency and physical and psychological impact of falls on individuals who have CP. The frequency of falls for these individuals is two to three times higher than for older adults, and the fear of falling can be more debilitating than the fall itself. This understanding underscores the importance and urgency of Gillette’s research.

FER program is a collaborative, best-practice approach to research that equally values contributions from LEPs, clinicians, and researchers during all phases of the research process. LEPs receive training and compensation for their engagement, which ranges in
engagement level depending on the study. Through her role as an LEP in the Consequences of Falls study, Kari found common themes that emerged from the feedback on individuals’ fall experiences.

Participants expressed needs around:

• Autonomy and control over the response to falls and efforts by others to help
• Preventative, policy-level environmental measures such as clearing clutter, fixing uneven surfaces, adding more handrails, increasing bathroom accessibility, and timely snow removal
• Changes in healthcare approaches and options, including validating the patient experience, shared decisionmaking, outdoor therapy, and better assistive devices

Kari partnered with Gillette's co-director of the Cerebral Palsy Institute Research Program, Liz Boyer, PhD (study Principal Investigator), Linda Krach, MD (co-investigator and physiatrist), Marissa Esterley (co-investigator and research coordinator), and two other LEPs on this study.

Gillette's Family Engagement in Research program has multiple, ongoing opportunities for Lived Experience Partners. Visit gillette.mn/family-engagement-in-research to learn more about becoming a valued part of a research team and contributing to the relevance and impact of our work.