Reflections on the 3rd Biennial National Center on Family Support Conference on Caregiving Research, Practice, and Policy
Reflections on the 3rd Biennial National Center on Family Support Conference on Caregiving Research, Practice, and Policy
By Erin Kent, PhD, MS, FSBM
September 30, 2024
Members of the Caregiving Collaboratory just attended the 3rd Biennial Building Bridges Conference on Caregiving Research, Practice and Policy, hosted by University of Pittsburgh’s National Center on Family Support. I have been a member of the organizing committee for the conference for the past 3 years, and it was truly fulfilling to see how much the field of caregiving research has matured and expanded. Drs Heidi Donovan (Pitt) and Beth Fields co-chaired the conference, with support from the indominatable project manager Julie Klinger.
A major focus of the conference was in improving real-world applications of caregiving research in the particularly in critical areas of implementing evidence-based interventions in practice and informing policy solutions at state and federal levels. Dr. Fayron Epps presented an overview of the deeply community-engaged work that she has done with the Black Church, which has given rise to the Alter Program for Individuals living with dementia and their caregivers, which grew from conversations with community advisory boards to a well-funded, multi-state faith-based endeavor to transform conversation and support of older adults in the Black community living with dementia.
Highlight plenary sessions include Dr. Jennifer Olsen, CEO of the Rosalynn Carter Institute for Caregivers, covering new developments in platforms for caregivers to stand on. She highlighted work the Caregiving Profiles work that RCI, Duke, and UNC have been conducting to re-conceptualize caregiving experiences from the lens of the caregiver themselves. She also cited Mrs. Carter’s call for a national Office of Caregiver Health to coordinate and advocate for caregivers across the federal branches of government. Dr. Courtney Van Houtven presented on ways to conduct economic valuation of caregiving work, providing several examples of work she and colleagues have led in studies conducted on the VA Program for Comprehensive Assistance of Family Caregivers. Dr. Joe Gaugler presented on the need for interventionists to focus on mechanisms of action in their caregiving interventions – to distinguish between form vs. function and core vs. adaptable components in order to improve adoption and reach. Dr. Melinda Kavanaugh led a riveting talk on child and youth caregivers and the examples of work her team at University of Wisconsin, Milwaukee, has led to create training and support programs targeting youth caregivers. One creative and touching resource she linked to is a short film called “Luki and the Lights” which provides a language-transcendent depiction of Amyotrophic Lateral Sclerosis (ALS) that can show people of all ages how the disease progresses and what supporters can do to help. Finally, and most importantly, Pitt NCFS Outreach Coordinator Heather Tomko led us through two family perspective panels that left audience speechless and inspired by the determination and generosity with which these caregivers had decided to channel their own experience into meaningful action on behalf of the 50 million plus caregivers toiling in love and dedication across the country despite lack of recognition, support, and preparation.
Another big highlight of the conference was the two poster sessions on Wednesday 
and Thursday night which gave researchers and trainees an opportunity to talk about ongoing work they were doing, developing interventions, using large datasets to reveal patterns in caregiving behaviors and health outcomes, and synthesizing research across many caregiver domains to identify gaps and opportunities for research. Stephanie Sperry, a second-year doctoral student and member of the Caregiving Collaboratory, presented a poster on the feasibility and acceptability of our cancer caregiver supportive care intervention, enCompass.
Nicole Brown, another second-year doctoral student, presented preliminary findings on a systematic review of problem-solving interventions for caregivers across care-recipient health conditions. Finally, Emmaline Keesee, MSPH and UNC alum, presented on an analysis of health-related quality of life among North Carolinian caregivers. We ended the conference with a novel workshop on using national surveys to conduct secondary data analyses with the aims of demystifying these resources and coming to together to form new collaborations and projects. Stay tuned for papers to arise from this workshop and lessons learned about research sprints.
I am always grateful to connect with old friends at conferences and make new connections; this conference is particularly motivating and fulfilling for me. My favorite parts were the walks and jogs along the Monongahela and Ohio Rivers, a lunch filled with old and current trainees at a spirited Greek restaurant, and dinners with brilliant minds ready to tackle wicked problems in caregiving and beyond.