In 1997, then-President Bill Clinton established November as National Family Caregivers Month to recognize and honor family as well as “informal” caregivers around the country. Today, more than 3.4 million informal caregivers exist in Texas alone, providing regular and unpaid assistance to elderly loved ones or those who have an illness or disability. The Texas Health and Human Services Commission (HHSC) has contracted with Texas A&M University’s Nandita Chaudhuri, a research scientist with the Public Policy Research Institute (PPRI), to lead a needs-assessment project to better understand how to help these caregivers.
According to the Administration for Community Living, families are the primary source of support for older adults and people with disabilities in the United States. Caregivers provide assistance with another person’s social or health needs, which can include everything from bathing and dressing, paying bills, shopping and providing transportation to attending to emotional needs and helping with chronic disease or disability management.
Chaudhuri’s team consists of Andrea Sesock, Anthony Jackson, Laila Alvi and Zack Brattin from PPRI; Theresa Hernandez, a doctoral candidate from the Department of Psychological and Brain Sciences; and Paul Busch, a retired professor of marketing from Mays Business School. Chaudhuri said their year-long project, which began in February 2022, is in its final stages.
“The project is about identifying the priority needs of the informal caregivers in Texas, as well as finding out why informal caregivers do not have access to respite services despite burnout,” Chaudhuri said. “We were asked to find out these needs through valid methodologies… the major problem is that they don’t have access to respite services, and most of them don’t know what respite is or the fact that respite services are available.”
According to Take Time Texas, the Texas HHSC website designed to inform caregivers of the respite services available in the state, “respite means having someone else look after your loved one while you take a break.”
Respite services can vary from a service provider going to a caregiver’s home to help with chores or medical care, to community services such as adult day care centers, to specialized camps or assisted living facilities where trained staff can supervise the loved one.
Along with unawareness of respite services, Chaudhuri’s team uncovered that caregivers face many other challenges: information on who is eligible for respite services is not easily available; terminology surrounding respite isn’t universally known or understood; caregivers have limited trust in quality of service provided by respite services; caregivers can suffer from cultural or self-determined shame in asking for help; and existing policies in Texas do not allow for consumer-directed choice for respite services.
“Sometimes, additional family members are ready to provide respite to informal caregivers, but they cannot be paid for their services because of existing policies,” Chaudhuri said. “This is not the case for other states.”
Chaudhuri said her team collected this information using scientific methodologies.
“One of the methodologies we used was a series of focus groups with all stakeholders: informal caregivers, current or potential respite service providers, families of caregivers and administrators,” Chaudhuri said. “We conducted about nine focus groups altogether, and we asked them why they didn’t use respite care services, as well as the challenges to accessing services… Either people didn’t know these services existed, or they didn’t know the extent of the services or how to navigate or pay for the services.”
Other methodologies Chaudhuri used included surveying both the informal caregivers across Texas and surveying organizations and individuals who provide respite services.
“Our goal was to learn what the state could invest in to reach informal caregivers and let them know what is available and how to access the services,” she said. “Is there a necessity to train respite service providers? What are the schematic needs to translate this information to caregivers? We collected lots of feedback.”
In particular, the HHSC wanted Chaudhuri and her team to take a look at the Take Time Texas website and provide improvement suggestions by reviewing similar websites from other states and gathering inputs from Texas users and stakeholders. Interested parties also can participate in a survey regarding the website’s functionality here.
“HHSC has been going through a lot of turnover during the pandemic but has since come under new leadership,” she said. “However, the website has not been improved in a long time, so the commission wanted to know from all stakeholders how to update it to meet their various needs. HHSC is now working on another marketing campaign centered on informal caregiver outreach, so our findings from this project will inform that campaign.”
For more information about respite care, including how to become a respite provider, Chaudhuri recommends visiting Texas HHSC’s Aging and Disability Resource Center.