UC Davis Health’s Family Caregiving Institute studies caretakers’ ethical dilemmas during pandemic
During the COVID-19 pandemic, many people have had to step up as caregivers for family members—especially for elderly people—whose support services were shut down as nonessential services in March of 2020, according to Dr. Terri Havrath, the director of the Family Caregiving Institute at UC Davis Health. Havrath said that the lack of resources for the elderly during the pandemic has put a strain on their families who have had to step in as caretakers in the interim.
“Community services that had been available to support them closed their doors when the pandemic struck and the stay-at-home orders were implemented,” Harvath said. “Families who had been using senior centers or adult day healthcare were suddenly cut off from those services. Families who are in the middle, who have children at home and are caring for aging parents suddenly have double duty at home and are torn between: how do you keep your kids engaged and having opportunities, and how do you protect your parents?”
This strain has been a point of interest for Harvath and her colleagues at the Family Caregiving Institute, including Dr. Mark Fedyk, an associate professor at the Betty Irene Moore School of Nursing. Fedyk has launched research examining the ethical dilemmas that these family caretakers have faced and continue to face amid the pandemic.
“[The motivation for this research] comes out of a broader tradition of research that you can basically summarize as ‘Please don’t forget about caregivers,’” Fedyk said. “A lot of health outcomes are driven by stuff that happens outside of the hospital, outside of the clinic, stuff that happens at home and is usually the responsibility of the family.”
Fedyk’s goal has been to come up with a way to ask caregivers how they have been affected by ethical dilemmas during the COVID-19 pandemic. He explained that these family caregivers are an often under-recognized component of the health system.
“[Fedyk’s] research is really groundbreaking in that it recognizes family caregivers as ethics workers, as frontline individuals who are called to make ethical decisions,” Harvath said.
Fedyk first tried to gather data from caregivers via a few different forms of survey, but he said the response rate was “not great.” While gathering this data and doing preliminary research, however, Fedyk said that he and his team found online forums where caregivers were discussing the dilemmas he was trying to learn about.
“In the process, we came across a couple of online forums in which caregivers were talking in great detail about how the pandemic had impacted them,” Fedyk said. “We did a preliminary analysis of some of these online discussion boards and we had over 15,000 data points, and we found that we could organize [a sample of] them into […]16 different themes that began to uncover what caregivers had been experiencing.”
He and his team are now examining those data points to determine how many of them contain moral or ethical dilemmas, which as of now, they estimate is about 8-10%. As a part of this process, they are organizing these dilemmas into different themes. Fedyk said that the most common themes that they have identified are burnout, validation seeking, increased financial burden and guilt.
Fedyk said that the goal of conducting this study is to learn more about the issues caregivers are facing and to come up with programs that could provide solutions.
“The hope is that this will give us a small but useful database that can serve as a foundation for further research to the world’s difficulties and the solutions that caregivers come up with to those difficulties,” Fedryk said.
One such program that Fedyk and Harvath have been collaborating on is a decision support service for caregivers.
“[Fedyk] and I are developing […] a ‘decisional support for caregiving dilemmas’ program that will offer consultation to family caregivers who are struggling in making decisions that put their concern for the safety of their older relatives with concerns about quality of life,” Harvath said. “Families are called to make these difficult decisions without very much training, either in the clinical aspects of the decisions they’re making or in the ethical aspects. Dr. Fedyk’s research will inform the clinical services that we want to develop for families to give them some support and help them identify ways in which they can think about the dilemmas they are facing and make more informed decisions.”
In addition to this service, Harvath and other employees at the Family Caregiving Institute are using Fedyk’s research, as well as their own findings, to address other dilemmas affecting family caregivers during COVID-19, including family caretakers worried about taking elderly family members to the hospital and being unable to accompany them due to COVID-19 restrictions.
“[Hospitals have] made exceptions for parents who have minor children and partners of pregnant women, which are appropriate exceptions, but they did not extend those same exceptions to caregivers for frail, older adults,” Harvath said.”That meant that [for] older adults—some with Alzheimer’s disease or for whom English is not a language they speak, much less their second language—if they got ill and had to go to the hospital, they were there by themselves with no one to advocate for them.”
Harvath has lobbied with UC Davis Health to change this policy successfully, so now any patient who comes to the hospital is allowed to have a support person come into the facility with them. She said that the Family Caregiving Institute is also working in partnership with the American Association of Retired Persons (AARP) to develop services and educational programs to further support family caregivers.
“We’ve helped them develop a number of videos that teach family caregivers how to do things like managing continence or help somebody with mobility problems or do complex dressing changes,” Harvath said. “We’re developing consultation services through the clinic, and we hope to be able to implement caregiver support groups. On my big wish list is to develop workshops where family caregivers can come and learn how to do some of the things that I went to nursing school to learn how to do: transferring somebody in and out of bed, on and off the toilet, helping change a bed when somebody is still in it. I think if we offered some workshops for family caregivers, that might help them feel more confident in some of the care that they provide.”
Fedyk said that the pandemic has been especially challenging for family caretakers and that his research has exposed the important role that they play in the health system and how they have had to adapt.
“The optimistic [takeway] is that caregivers are very creative,” Fedyk said. “Caregivers, almost by definition, are having to compensate for the absence of formal support by creating all sorts of informal solutions. The pessimistic thing is just seeing how it wasn’t too soon after the pandemic became the pandemic […] that caregivers really started to get impacted. They ran out of the usual tools and the usual strategies and solutions. They had to balance working full time and being a full-time caregiver.”
Written by: Katie DeBenedetti — features@theaggie.org
