MNLEND Research on Lived Experience of Families

April 11, 2017

MNLEND 2014-15 Fellow, Jocelyn Bessette Gorlin PhD, RN, CPNP, Assistant Professor, Department of Nursing, Saint Catherine University, recently published an article in the Journal of Pediatric Nursing based upon her earlier MNLEND research project and dissertation. Her research examined the experiences of families living with a child with severe autism.

There is limited literature on the experiences of families when a child has severe autism as distinct from milder autism and that also includes the voices of multiple family members. She visited the homes of families to interview as many family members who would share their story including mothers, fathers, siblings, and grandparents. 

Family members were willing and eager to talk. Many said they hoped to break the cycle of isolation by sharing their story and hoped to additionally improve health care. Gorlin states that several families expressed joy that finally their story would be shared with the public when she let them know of the publication. She would like to thank the families who opened their homes and lives to her and to the LEND staff who also ultimately assisted the families in telling their important stories.  Her article can be located here.