Being a family caregiver today is a demanding responsibility. If caregiving is stressful for the “typical” caregiver—a 49-year-old woman—think how much more is at stake when the caregiver is a child or teenager. Yet more than a million youngsters ages 8–18 take on challenging tasks to help a parent, grandparent, sibling, or other relative. While that number is undoubtedly an underestimate, it does not even include an emerging subgroup—children whose parents are struggling with opioid addiction.
If we have limited information about the young people taking care of those with diabetes, cancer, and other chronic illnesses, we have even less information about children whose parents are addicted to opiates such as fentanyl, oxycodone, morphine, or heroin. Yet there is enough information to suggest that the epidemic is and will continue to adversely affect people in their primary parenting years and hence their children. For example, consider the high rate of hospitalization among those ages 25–44, the equal or nearly equal rates of addiction of men and women, and the growing number of newborns with serious withdrawal symptoms.
In hard-hit areas, such as Kentucky, 15 of every 1,000 infants are born dependent on opioids. While these infants need treatment for their immediate withdrawal problems, they also need the kind of nurturing all infants need from their mothers. Pediatricians and drug treatment experts hope to avoid the panic that accompanied the cocaine epidemic and the early years of the HIV/AIDS epidemic, when “boarder babies” born to drug-using and sometimes HIV-infected women were kept for long periods in hospital nurseries. For the longer term, unless their mothers get treatment, these babies will be at risk for developmental delays and other health problems.
The Youngest Caregivers
The only national survey of young caregivers in the United States was conducted in 2004 by the National Alliance for Caregiving (NAC), a Bethesda, Maryland-based advocacy organization, and the United Hospital Fund (UHF), a New York City nonprofit devoted to health services research and policy analysis. That survey found that nationwide there were approximately 1.3–1.4 million young caregivers, divided almost equally among children ages 8–11, 12–15, and 16–18. The total is undoubtedly an underestimate, since parents had to give consent for their children to be interviewed, and they could listen in if they chose (most didn’t). Only English-speaking parents were contacted, and parents with substance abuse problems or mental illness were unlikely to consent.
Particularly in families with limited resources who are not eligible for or refuse home care, children are the default caregivers. Their duties range from emotional support and helping with mobility to giving injections, monitoring medications, talking to doctors and nurses, and changing diapers. Caregiving in this context is not doing household chores—running errands, cleaning up after dinner, walking the dog, or other ordinary and expected contributions to family life. They are caregivers as defined for adults on the UHF Next Step in Care website—“Any family member, partner, friend, or neighbor who provides or manages the care of someone who is ill, disabled, or frail”—and carries similar responsibilities and burdens. While caregiving for a parent with an opioid addiction may be more episodic and crisis-driven than in other chronic illnesses, it is yet another manifestation of the spectrum of potential caregiving responsibilities.
Caregiving influences children’s lives and development, sometimes profoundly and in both positive and negative ways. In any group of health or social service professionals, there will be several who chose their careers because they were child caregivers, even though they were probably never identified in that way. Many child caregivers become super-achievers at home and school. For example, Connie Siskowski, a member of the advisory committee for the NAC/UHF survey of young caregivers, was herself a child caregiver for her grandfather. After becoming a nurse and realizing how much caregiving had impacted her life, she created the Association for Caregiving Youth in Boca Raton, Florida.
Other young caregivers fail or drop out of school. Many carry into their adult lives resentment and anger at being saddled with so much caregiving responsibility at a young age, as well as emotional burdens beyond their capacity to understand and manage. Those who opt out—literally running away or refusing to help—also pay an emotional price. Much more research is needed to understand the range of outcomes and what kinds of interventions work best.
The United States is not the only country where children become caregivers. But we are at the lower end of the scale in terms of helping these children and their families achieve a balance between the often complex needs of the ill family members and the basic needs of the children to go to school, spend time with friends, and engage in sports or other activities—in other words, to be like other children.
Agnes Leu (Swiss) and Saul Becker (British), researchers in the field of “young carers” (as they are called in Europe), have created a cross-national comparative classification of awareness and policy responses. Of their seven categories, the highest is “incorporated and sustainable” (no country met this standard). Next is “advanced” (only the United Kingdom measured up). “Intermediate” (for example, Australia and Norway) is followed by “preliminary” (for example, Austria, Germany, and New Zealand).
Where is the United States? It is in the “emerging” category, just below “preliminary,” one step ahead of “awakening” (Greece, United Arab Emirates, and a few others), and two steps from the bottom of “no response.” The United States falls in the “emerging” category because there is some growing public and specialist awareness, a limited but growing research base, no specific legal rights, and no specific public services or interventions. Other countries in this category include Ireland, Italy, and subSaharan Africa.
Recognizing this paradox, Leu and Becker ask: “Why is the most advanced capitalist society in the world at Level 5 in our classification?” They suggest a number of reasons, including an emphasis on private insurance-based benefits and services, instead of on government as a collective good. Many of the families with young caregivers in the United States rely on Medicaid services, which focus on the beneficiary, not the family.
The researchers also suggest that the deference given to parents in the United States and the generally negative attitude toward children’s rights play a role. Many Americans may disagree and claim that our society is too child-centered. Yet this child-centeredness may not extend beyond one’s own children to those who are homeless, hungry, or poor, especially when public funding is at stake.
Services For Young Caregivers
Apart from ideology, there are practical reasons for the lack of attention to young caregivers. Aside from the landmark survey mentioned above, all the major US surveys of family caregivers include only people ages 18 and older, partly because 18 is the age at which respondents can consent for themselves and partly because it is the norm to think of children as requiring care, not providing it.
Children do not fit easily into the available caregiver services. Organizations and programs are mostly geared toward the needs of middle-age and older adults caring for aging parents and grandparents. There are some exceptions; for example, the National MS Society has special programs for children of their primary clients, young adults with multiple sclerosis, and has a website for children. Alateen has had support groups for children of alcoholic parents for decades. On the child welfare side, youth service organizations do not typically see child caregiving as part of their mission; they are already dealing with huge problems of poverty, education, and health care. Only the American Association of Caregiving Youth has a major program working with local schools to serve young caregivers.
Contrast this paucity of resources with those in the United Kingdom where child carers (ages five and older) are counted in the census along with adult carers and have hundreds of special programs available through schools, carers’ centers, and the Internet. The framework for including children had already been laid by the adult caregiver movement, which achieved the legislative inclusion of carers’ rights, carers’ allowances, flexible employment, and a national carers’ plan. Carers in the United Kingdom, however, have many of the same problems as caregivers in the United States. In both countries, there is a gap between health care and social services, lack of resources, and inadequate communication with health professionals.
To move forward in the United States, an important step would be a national survey of young caregivers of different ages and from diverse families and communities. Special attention should be given to learning more about the impact of the opioid epidemic on family caregiving. Often the first impulse from professionals is to remove the child from the home and place them with other family members, typically grandparents. Certainly safety is essential, but it is also important to maintain connections with parents. Some grandparents may have health problems and be unable or unwilling to care for young children or teenagers. Many have inadequate resources to take on this responsibility and are already dealing with the impact of opioid addiction on their adult children.
Young people themselves should be part of the process of planning services that address the challenges they face and that provide support for the whole family. Health care professionals should be encouraged to look at the whole family when creating care plans and to ensure that age-appropriate contributions of young caregivers do not interfere with their educational and extracurricular activities. Children’s services should pay special attention to caregiving youngsters. It is essential that the family be the unit of care, just as it is supposed to be in chronic illness and palliative care.
Young caregivers can benefit from their experience by developing skills and empathy, but they should not be forced to assume roles that are taxing even for adults. They are a particularly fragile part of a vulnerable workforce. A society that truly cares about its families and children must turn that ideal into reality by supporting these young caregivers and their families in sensitive, compassionate, and effective ways.