Susan Bonis, a nursing professor at the University of Wisconsin Oshkosh, is currently working on a reflective journaling project with parents of children on the autistic spectrum (ASD), to help them understand their own needs and achieve a contented quality of life.
Bonis described how parents of children with ASD often feel stressed due to the amount of time spent balancing meetings, clinic visits, therapists, developing relationships with providers and balancing needs of their other children.
“Parents are so focused on managing the needs of their children they almost completely ignore their own needs,” Bonis said.
The focus of Bonis’ research interest is the experience of autism from the perspective of the person living it. This includes parents of children with ASD because managing their child’s issues with autism is as much a part of their everyday life as it would be for an adult living with ASD. In a previous study, Bonis used interviews to develop an understanding of what it’s like for adults living with autism.
“Many adults have suffered all their life in social aspects and don’t really understand why,” Bonis said.
Bonis’ research has also shown that parents in the Fox Valley have become proficient at identifying and meeting the needs of their children living with ASD but neglect their own needs.
“I have found there are two groups of parents. One group is energized through all of the activities; the other group seems absolutely crushed under the burden of balancing time and guilt,” Bonis said. “This is an under-researched area but important.”
The main purpose of the reflective journals is for parents to reflect on their experiences in order to develop an understanding of what they need and want to achieve a contented quality of life.
Parents are asked to first write about what their life was like before they had a child with ASD. Next they are asked to write about their life since becoming a parent of a child with ASD. The final question asks them to write about what that change means to them.
“What strikes me most are the parents’ eyes,” Bonis said. “They are so sad. I want to know what is behind those eyes. I want to know their story. I want to know what we can do to help them find contentment.”
Bonis’ current research is focused on the parents’ social support system and how that affects their quality of life. She also asks the parents to write about contentment and what it means to them. By asking about contentment, she is hoping to understand how contentment is associated with quality of life.
“It is really emotional to work with parents,” Bonis said. “They pour their hearts out to me. It makes me feel honored to be part of their experience.”