MNLEND Alumna Publishes!

March 3, 2017

Last year, I was very fortunate to be a LEND Fellow at the University of Minnesota. I applied because I was embarking on my PhD dissertation in nursing and wanted to explore the experience of families of children who lived with severe autism. The LEND experience not only provided an in-depth education in neurodevelopmental disorders, but also the LEND staff helped me access families who would ultimately participate in my research. This research ultimately changed the way I understand families who live with a severe chronic condition such as severe autism.

I came to LEND as a pediatric nurse practitioner with 25 years of experience in hematology and little experience in neurodevelopmental disorders, and I soon learned there is limited literature on the experiences of families when a child has severe autism versus milder autism and rarely do studies include the voices of various family members such as extended family.

For my study, I visited the homes of several families to interview as many family members who would share their story including mothers, fathers, 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.

After the research was complete, we invited the families who participated in the study to attend a focus group to discuss their research experience. They were thankful to be able to share their story and thrilled to be able to connect with the other parents as they often expressed a feeling of isolation in caring for their child with severe autism.

The dissertation was recently published. When I shared this news, several families expressed joy that finally their story would be shared with the public. I would like to thank the families who opened their homes and lives to me and to the LEND staff who also ultimately assisted us in telling these precious stories. 

View Article