The nation's laser-focused attention to the opioid crisis has burned away some of the stigma around addiction, but some effects of the epidemic remain largely taboo topics. While there has been discussion of family members suddenly being thrust into caregiving roles because of an adult's addiction, there has been little acknowledgment that sometimes these new caregivers in a family are minor children themselves.
The phenomenon of caregiving youth, and the comparatively scant attention it receives in both addiction and other health arenas, qualifies as a hidden effect of the opioid crisis.
“The U.S. is behind on this issue, and there are a lot of opinions as to why,” Melinda Kavanaugh, PhD, LCSW, an associate professor of social work at the University of Wisconsin-Milwaukee who has studied caregiving youth, tells Addiction Professional. “We're not a national health care system, so everything is tertiary—our system is not very preventative.”
Kavanaugh adds, “Other countries integrate caregivers into their programming. We don't do particularly well with adult caregivers,” much less children.
Kavanaugh's research has looked mainly at caregiving in families where an adult has a neurological disorder. She is currently using National Institutes of Health (NIH) grant support to study families affected by Alzheimer's disease. Although there is no definitive source on the degree to which addiction has led to youths having to take on parenting-type responsibilities in a household, the issue of caregiving youth received prominent mention in a report earlier this year from the United Hospital Fund and the Milbank Memorial Fund, a paper urging a greater focus in policy and programming on the opioid epidemic's fallout for children and their families.
“If we can strengthen families, we can reduce the burden and stress on the child,” Connie Siskowski, RN, PhD, board president of the American Association of Caregiving Youth, tells Addiction Professional.
Rooted in personal experience
Siskowski's work on this subject stems from her own experience in childhood. With her parents having divorced and her mother holding two jobs, Siskowski from age 11 to 13 found herself with primary caregiving responsibilities for her ailing grandfather.
“I wound up needing to do everything for him,” she says. She would end up finding her grandfather dead in the middle of the night, and says she experienced resulting feelings of abandonment.
In her research for her doctorate, she became much more familiar with the extent of the problem of young people suddenly becoming caregivers. Most who go through his experience tend to have no idea that others out there grapple with the same situation.
“You don't tell your 12-year-old peer that you gave your mother a bath last night,” Kavanaugh says.
The American Association of Caregiving Youth began in 1998 with a different name and a broader caregiving focus, but is now considered the only organization in the U.S. that is solely devoted to addressing caregiving youth issues. Based in Palm Beach County, Fla., the organization in 2006 received a grant to launch a groundbreaking caregiving youth project that started in one local middle school and now encompasses 26 schools in Palm Beach County. The initiative, which includes for each child with a six-week course, is designed to offer young caregivers a range of support in school and at home.
“The kids learn that they're not alone, which is huge,” Siskowski says. “We begin in 6th grade and go through high school graduation.”
Participants have achieved a graduation rate in excess of 97%, she says. Nearly 650 students in Palm Beach County participated last school year. Given that South Florida consistently has been at the epicenter of major drug crises, it is likely that at least some of these children are in homes affected by addiction.
However, there can be barriers to helping children when the health issue affecting the household is substance use. “In order to participate in the project, you need parental consent,” says Siskowski. “It's difficult to receive it when substance misuse is involved.”
That is part of the reason why it has been virtually impossible to quantify the extent of youth caregiving in families affected by the opioid crisis.
What the data suggest
Until 2005, there had never been a comprehensive report in the U.S. on the prevalence or impact of caregiving on children. The mindset generally has been one of seeing caregiving as an adult-only experience. But that year, the National Alliance for Caregiving and the United Hospital Fund published “Young Caregivers in the U.S.,” combining results of two studies on youth caregiving prevalence and how these issues play out for children.
The research for the report found that there were approximately 1.3 million to 1.4 million child caregivers ages 8 to 18 in the U.S., with around 3 in 10 being between the ages of 8 and 11. Caregiving youths tend to live in lower-income households, and more than half help the care recipient with at least one activity of daily living. These youths appear to exhibit more feelings of depression or anxiety and a greater incidence of antisocial behavior than their non-caregiving peers.
By the time this first-ever U.S. report on caregiving youth was completed, services such as support groups and recreation activities for young caregivers were already widely available across the United Kingdom. “They're the gold standard for recognition of this,” says Kavanaugh, adding that Australia also does a good job addressing these young people's needs.
There is still a lack of understanding in the U.S. regarding the challenges facing these young people. It is not truly a case of the child becoming the parent in these households, Kavanaugh says. “They're actually providing care for them, but the parent has not abdicated the parenting role,” she says.
In Kavanaugh's home state, two school systems are now working to develop a peer-to-peer program for children directly affected by the opioid crisis, some of whom have lost one or both parents. “They need like peers,” she says. “School systems are the intervention point that makes the most sense.”