Young Caregivers

According to Young Caregivers in the U.S. (2005) a report of the National Alliance of Caregivers and United Hospital Fund:

• As many as 1.4 million children in the U.S. between the ages of 8 and 18 provide care for an older adult or a sibling, including approximately 400,000 youngsters who are between the ages of 8 and 11. This is as many children as there are in the combined school systems (grades 3-12) in New York City, Chicago, and Washington, D.C.
• Many of these children are members of minority groups and are from single-parent, low income families.
• A third (30 percent) of child caregivers help with medications and 17 percent help the care recipient communicate with doctors or nurses.
• 35 percent of child caregivers in minority households report having no help in dispensing medications, compared to 11 percent in non-minority households.
• About half (49 percent) of the caregivers report that they spend “a lot of time” caregiving.
• According to parents’ reports of their child’s behavior, child caregivers tend to exhibit more anxious or depressive behavior than noncaregivers.
• Participation in school activities, school performance, and achievement is also affected.
• Children who are caregivers are more likely to have trouble getting along with teachers, to bully or act mean toward others and to associate with kids who get into trouble.
• The percentage is about equal of boy and girl caregivers, but boys seem to have greater difficulties than girls, particularly in feelings of isolation and sadness and in behavior and school problems.
• This is a markedly understudied area. Much future research is needed.

Case Example

“Partly paralyzed, with diabetes and colitis, Linda Lent needs extensive care at home. But with her husband working long hours as a bus driver, Lent, 47, relies on a caregiver who travels by school bus, toting a homework-filled backpack: her thirteen-year old daughter, Annmarie. Annmarie injects migraine medicine, takes blood from her mother’s finger for tests, and responds to seizures - responsibilities she, at times, finds overwhelming.” New York Times, Feb. 22, 2009

Important Issues Specific to Young Caregivers

The primary responsibility of children and teens is to achieve their educational potential. The dual role of being a student and a family caregiver may compromise a young person’s school performance because of the inherent demands and stressors of providing care for a family member with a chronic illness or disability. They may show tell-tale signs of the strain at school. Such signs include:

• Decrease in school performance.
• Increase in tardiness or absences.
• Changes in social behavior, e.g. isolation; disruptive behavior.
• Changes in mood, affect and emotional reactivity.
• Increased worrying about self and/or family, e.g., anticipating bad outcomes, self-blame and ruminating.
• Fatigue.
• School drop-out.
• Inability to participate in extra-curricular activities.
• Bullying or being bullied.

Psychologists both in and out of the school system are in a good position to work with teachers, nurses and guidance counselors to help identify these at-risk children and teens, especially in middle school and high school settings. Referrals and community resources may then be put in place, in addition to in-school support.

Important issues that may affect the health and well-being of caregiving youth, and must be considered, are:

• Taking on adult roles and forsaking age-appropriate and developmental activities, e.g.  “parentification” and becoming “medicalized.”
• Role reversal from home to school, from being “in charge” to following rules.
• Inability to focus and learn at school when worried and stressed about the well-being of loved ones.
• Discomfort with opposite gender caregiving (related to responsibilities such as toileting, dressing).
• Physical injuries from lifting and transferring a family member.
• Potential trauma in doing wound care or other medical tasks for a loved one.
• Unresolved grief and loss of sense of purpose when a loved one dies, especially when there is no recognition of the role the child or teen had in care.
• Guilt, all the “what ifs” done or not done.
• Age disparities in the provision of support services since caregiving youth are usually an invisible and therefore underserved/unserved population.
  
• Breakdowns in support services when schools and community organizations lack knowledge about the impact of health conditions on the family, including the existence and needs of youth caregivers.
• Long term effects on physical and mental health, e.g., physical disabilities from injuries, stress-related health problems, depression, anxiety, suicidal ideation and/or behavior.
• Short term and long term personal adjustment difficulties, e.g., anger about lost childhood years, conflict with siblings/other family members.
• Educational and occupational problems, e.g., inability to graduate,  pursue college and the career choices made by choice or necessity or early socialization into a helping role.
• The positive or negative impact of nursing home diversion programs and adult day care programs on caregiving youth depending on whether the community/long term care helps their circumstances.

• Study on Children of Seriously Wounded Service Membersopens in new window (PDF, 1.62MB) (2014) describes the needs of children of service members who have been seriously wounded in combat, as well as the programs and services that support these children and families.
• Young Caregivers in the U.S. (2005) a report of the National Alliance of Caregivers and United Hospital Fund.
• The American Association of Caregiving Youthopens in new window (AACY) is devoted to providing information and support to children in caregiving roles in their families.
• AACY’s Caregiving Youth Projectopens in new window is a comprehensive program to address the challenges faced by children who take care of ill, injured, elderly or disabled family members. It promotes social and system change by integrating healthcare (body), education (mind) and the community (spirit) to create a solid foundation of support services. Children under 13 need parental permission to be able to access their program information. Children 13 and over can go directly to their program information.
• Working With Young Caregiversopens in new window web page of The Princess Royal Trust for Carers provides information designed to help professionals in all areas work more effectively with young carers. It covers everything from identification of young carers, through to the transition to adulthood.