What I should Know about Caregiving Youth
What I should Know about Caregiving Youth
Perspectives on Caregiving Youth
Connie Siskowski, RN, PhD
"I've learned what it must be like to have a baby" a ninth grade honors student living in Delray Beach, Florida responded when asked what she has learned from her experiences in caring for her grandmother. She and her older sister agreed. And, the sister went on to say that she has learned to be responsible. She knows that her grandmother, who lives with her family, doesn't know when she is hungry and it's time for her to eat; so her granddaughter keeps track of the time, prepares her meal, and assists her with eating to makes sure she gets the nourishment she needs. Her grandmother is thin and in constant motion as she walks around the locked home, spending much energy and burning many calories.
We somehow communicated; the grandmother in her native tongue of Creole and me, mostly non-verbally. The girls shared how their whole family including male cousins, take turns with various intimate caregiving activities such as taking showers, personal care and changing diapers. The family believes it is their duty and joy to care for their grandmother and often sing as they help her. The girls told me that on a scale of 1-10 with 10 being the most difficult, it's about a 7.5. These young caregivers never miss school and they always get their homework done; they say their parents make sure of that!
In contrast, during January 2002 a ground-breaking survey was conducted among 12, 681 students in grades 6-12 throughout 54 Palm Beach County, FL public schools. This What Works Survey was conducted by Palm Beach Atlantic University in West Palm Beach, FL by Dr. Bert Miller and associates ultimately including myself. The purpose of the survey was to learn from children what they feel either helps or hinders their ability to learn. It seemed logical to ask students if family health situations were affecting their education. Fortuitously, the first time in the United States, this large group of economically and culturally diverse students were asked if there was a person with special medical needs in their home or close by. More than half of all students indicated that there was such a situation; of these, two out of five students either agreed or strongly agree to the statement, "Living with this person in need of special medical care hinders your learning."
While discussing young caregiving realities, Lashandra Span of the Palm Beach County School District related the circumstances of a twelve year old boy who lives with his single mom and grandfather. His grandfather is wheelchair bound and his mom leaves early in the morning to go to work. The student's responsibility is to get his grandfather up in the wheelchair before he goes to school. Some days this just takes longer than other days. On the days it takes a little longer, the child misses the school bus.
The composition of our families is changing with more single parent households, plus more intergenerational households. At the same time, people with all types of chronic conditions live longer, and advances in medicine and technology allow for more intense family care at home. It makes sense that many members of caregiving families are in some way affected, and this includes children, and their education.
The role that children play in caregiving families is not unique to America; it is a global phenomenon. The issues surrounding young caregivers were identified as one of three global priorities during the 2002 Third International Conference on Family Care. England was among the first to recognize "young carers" and to begin to develop models of support for them and their families. Their studies show that the average age of a young person with caregiving responsibilities is 12 years1. Most live in single parent households, and one in three children regularly missed school or had educational challenges as a result of their caring2. There are now more than 120 support systems for young carers throughout the United Kingdom. Reports from Australia are similar to those from England. In Australia, the average age for a young carer is 13 years.
Several months ago Boca Respite Volunteers was contacted by a seemingly frustrated case manager from Boca Raton Community Hospital. She was trying to find resources to help a family. The dad and family caregiver became suddenly seriously ill and in ICU with inoperable cancer. The mom, who has Multiple Sclerosis (MS), spends her days in a wheelchair. Now the only daughter, a senior in high school, became a primary caregiver for her mom. She wasn't confident of driving the family van…after all her dad had always done that! Our agency reached into its volunteer network to find help to get the mom back and forth to the hospital to visit. That was the easy part. The challenge was to create a caring team to check on the mom while the daughter attended Girls' State, her reward for honors work in school. The parents desperately wanted their daughter to have that experience of a lifetime. The resourceful daughter already had help from a competent friend to spend the nights with, and care for her mom. Her friend knew the routines because she regularly helped with her quadriplegic dad. She confided that her friend was "lucky" because she had a sibling to share the responsibilities of caregiving.
As with adults, the identification and recognition of the role of being a young caregiver is beneficial. An Australian child said, "Being called a young carer gives me identity in my role, what I do at home, not just to speak out to other people, but also in myself…to find that identity is amazing and was good".3
In other reports, children felt that they valued their family closeness. Two nurses and researchers in the U.S. mid-west have worked with young caregivers in families dealing with cancer. In addition to negative effects, they reported that youth learned new things and enjoyed the "I can do it myself" experiences of life learning.
For youth who are family caregivers, "I can do it myself" should not translate into "I can do it by myself"…therein lies the need for change.
1. Carers National Association. (1997). In on the act? London: Author.
2. Dearden, C. & Becker, S. (1998) Young carers in the UK: A profile. Carers National Association, London.
3. Carers Australia. (2001). Young carers research project final report. Commonwealth Department of Family and Community Services. Author. p. 20
4. Gates & Lackey. (1998). Youngsters caring for adults with cancer. Image: The Journal of Nursing Scholarship, 30 (1), 11-15.
Last updated on March 22, 2008