Handling daily challenges is part of the job description for someone caring for a veteran readjusting to life back home after a tour of duty on the battlefield. Family members and spouses are often the ones who end up caring for wounded veterans, and they must find the strength to physically lift veterans with amputated limbs, coordinate doctor’s appointments, mediate family dramas and keep households running on top of their existing responsibilities.
What they don’t always do well is ask for help or stand up for their own needs, even when they desperately need to do so, according to Sherrie Wilcox, senior research adviser at Blue Star Families, an organization dedicated to serving military families.
“Maybe they’re not close to family or they just don’t want to burden anyone,” Wilcox explained. “In many cases, they don’t feel someone else can take care of [the veteran] the way they can, so they’re reluctant to turn over these duties.”
That’s why Wilcox and her team are using a $750,000 grant from United Health Foundation to develop an online program that trains military caregivers to better communicate their own needs. Wilcox’s team is testing the program in the summer of 2017 on some 100 caregivers in cities with a high concentration of military personnel, including San Diego, San Antonio and Colorado Springs.
Failure to ask for help at the right time can be costly for caregivers—particularly the 1.1 million Americans caring for veterans of the post-9/11 conflicts.
Compared with people caring for veterans of earlier conflicts, these caregivers are more likely to be caring for their spouses (as opposed to their parents), balancing caregiving with a job, and caring for a veteran who has a behavioral health condition, according to a study from the RAND Corporation’s Military Caregivers Study.
“Post-9/11 caregivers are fairly young, and the wounded warriors they’re caring for are fairly young, too,” Wilcox said. “The caregiving situation is a long-term thing that they’ll have to be dealing with for the foreseeable future.”
Providing long-term care to a family member or partner can eventually lead to caregiver burden, Wilcox said, in which stress causes caregivers to develop mental and physical ailments of their own. For example, 38 percent of post-9/11 military caregivers show signs of clinical depression—double the rate among both caregivers tending to veterans of previous conflicts. Only one-third of depressed caregivers are receiving treatment.
Researchers hope the training, which leads caregivers through virtual conversations they might encounter in their daily lives, will improve communication skills and quality of life for caregivers. Blue Star Families hopes to make the training available online to anyone, regardless of military connection.
The caregivers who participate in the pilot will get a tablet and start to work through two hypothetical scenarios, watching virtual characters act out the scenarios:
• A woman has taken time off from work for a few weeks to care for her husband, a veteran with post-traumatic stress disorder (PTSD) and anger issues. But now, she has to return to her job. Faced with no other options, she has to ask for help from her mother-in-law, who never approved of her or the marriage.
• A woman and her husband, a veteran suffering from anxiety, depression and PTSD, have an argument. A few weeks ago, he agreed to attend a party, but now that the day has arrived, he insists on staying home.
The caregivers then get the chance to interact with the virtual characters, choosing one of several preloaded responses to reflect what they would do and say if they were in the woman’s shoes.
“As they click through the answers, a virtual coach pops up and provides feedback,” Wilcox said, noting that the coach is an animated figure.
The program is designed so that researchers can add in new conversations and scenarios as they are developed. Wilcox already has plans for future research.
“We’d like to look at caregivers who are caring for both children and wounded warriors,” Wilcox said. “Often, caregivers have to take a lot of time off work or even leave their job or reduce their hours in order to take care of everyone. The longer they do this, the more likely they are to show signs of caregiver burden.”
Eventually, Wilcox thinks the training can help all kinds of caregivers—not just those in the military. The researchers hope to have preliminary data in the fall of 2017 and full results by the summer of 2018.