Alumni Update: Jocelyn Gorlin (MNLEND Fellow, 2014-15)

While teaching graduate nursing students at Saint Catherine University, Jocelyn Gorlin encourages a healthy dose of listening along with doing for patients.

“It is really quite simple, but profound in some ways,” said Gorlin (MNLEND Fellow, 2014-15), an assistant professor at St. Kate’s. “I talk a lot about family stories and how everyone has a story to share. Too often in healthcare we tell families what we think but we don’t really listen to them.”

Stressing the importance of person-centered care, Gorlin shares lessons she learned as a fellow by conducting extensive interviews of families living with children with autism with high support needs. The project also informed her dissertation work and led to a published article in the Journal of Pediatric Nursing.

“I use those stories as a lens into really understanding the effects of chronic illness on each family member,” she said. “Though I did not intend to study autism and other neurodevelopmental disorders, LEND exposed me to a new area of research and changed the way I understand and teach about chronic pediatric conditions.”

Gorlin’s path to autism research actually stemmed from a 25-year career in pediatric hematology. As a doctoral candidate in nursing at the University of Minnesota, she wanted to explore whether and how family wellbeing and quality of life are affected by serious pediatric conditions. For many of those conditions, the severity did not always predict decreased family wellbeing. In the case of autism, however, previous broadly defined research supported the notion that it typically did predict low family quality of life.

Indeed, her research confirmed family wellbeing suffered due to lack of sleep and other factors attributed to severe autism-related behaviors. She also heard joyful stories of networking and support from family and friends, however, and a collective desire to help other families living with similar challenges.

“My path to LEND was serendipitous, but it has been one of the best journeys of my life,” she said.