Researchers discover autonomy increases family tension at the end of life

Human Development and Family Sciences professor Dr. Jacquelyn Benson and other researchers found a central theme to reasons behind conflict at the end of life.

Oftentimes caregivers struggle to manage family conflict when they deal with the approaching death of a loved one. The discoveries from research conducted by Human Development and Family Sciences professor Dr. Jacquelyn Benson, Debra Parker Oliver, Karla Washington and George Demiris in a clinical trial found the central theme behind this problem: autonomy.

The five-year study began with Demiris at the University of Washington. People in the study were randomized into two different groups, one of them being a control group. In the study, the researchers asked caregivers of people with terminal illnesses what strategies they used to help manage conflict.

When the researchers at MU joined the study, they analyzed the data from Demiris’s original trial, according to the research paper written by Benson.

“What we did in the study was we just explored specifically what type of conflict and tension family caregivers experience,” Benson said. “We asked them a lot of questions regarding what the experience of those conflicts was like for them.”

Throughout her research, Benson found that the caregivers struggled deeply with a lot of things.

“What we found was that really what was going on underneath all these arguments [was] just a general tension about autonomy, and by autonomy we just mean control,” Benson said. “A lot of times being a caregiver limits your time outside that role. It’s hard for them to be able to prioritize their personal life and their career.”

According to Benson, the best way to relieve these tensions among families is to talk about them.

“We propose in the study that health professionals working directly with caregivers and families have conversations with families about this central tension,” Benson said.

Benson believes that a lot of conflict management and understanding where the conflict stems from is key to avoiding tensions in the caregiving process. Having a sense of understanding on both ends of the situation can eliminate conflict tension experienced.

Benson also said that communication, support and self-care are critical for caregivers to reduce distress. She also hopes people realize conflict is not a negative thing, but it rather forces people to change behavior.

“[It is important to think] of conflict as a way of changing dynamics within a family, changing them for the better, possibly changing dynamics within a system so it can lead to change,” Benson said. “Change is oftentimes very good, especially if what has been transpiring in the past has just been recurring behaviors that lead to the same outcome.”

One of the researchers, Washington, said the research team is highly focused on supporting family caregivers of people who are living with a serious illness. They have a number of different studies going on frequently, Washington said.

“This work is one piece of that of trying to find a way that we can develop an intervention that hopefully, healthcare providers could offer family members,” Washington said. “We tried to design interventions that are really scalable, so that can disseminate it, and it can be used in lots of different healthcare settings.”

Washington also hopes that those who read and learn about the study know that conflict during the end of life processes are normal, and that sometimes the end of life process is often not portrayed correctly.

“When a lot of people love the same person and want what’s best for them, it makes sense that some of these tensions are going to arise,” Washington said.

Edited by Laura Evans | levans@themaneater.com

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