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Children and young adults often take on more responsibility when their parent is diagnosed with cancer. A recent study surveyed these young carers about their experience.
Approximately 25% of individuals with cancer are raising children at the time of diagnosis, which often results in children and teens experiencing a shift in their roles and responsibilities after their parent is diagnosed. These role shifts can result in both positive and negative outcomes, according to a study presented at the 48th Annual Oncology Nursing Society Congress.
“In the U.S. there are approximately 5.4 million young carers under the age of 18. They provide care without the same education, support and acknowledgement that their adult counterparts receive,” study co-author Bailey Hendricks, a postdoctoral research associate at the University of Nebraska Medical Center College of Nursing, said while presenting the findings.
Researchers from the University of Nebraska Medical Center collected survey data from 52 individuals who were between the ages of 8 and 24 years old when they were living with a parent with cancer. On average, patients were about 16 years old while providing care.
READ MORE: Adolescents: The Forgotten Caregivers
Three-fourths (75%) of respondents identified as a young carer, which was defined by the researchers as “a person who takes on roles and responsibilities that are typically taken on by an older person, because of their parent’s illness. These roles and responsibilities differ from those of their peers.”
The average frequency of caring was 22.43 hours per week, with the duration of care lasting slightly more than three years. As such, 71.2% of survey respondents reported high to very high amounts of caregiving activity. Most commonly, young caregivers took on the responsibility of domestic activity, with other added responsibilities being emotional care, household management, personal care, sibling care and financial and practical management.
As a result of these shifted roles, 52.9% said that they experienced high positive outcomes, while 47% reported high negative outcomes. The most common unmet needs that were reported were regarding information on their parent’s cancer, familial support and dealing with feelings. The researchers noted that the care that these individuals provide is often beyond their appropriate age and/or developmental level.
Of note, the majority of survey respondents were White (92.2%), female (82.7%), living in a two-adult household (78.8%) and caring for a mother with cancer (63.5%).
Considering these findings, the study authors said that more research is needed on young carers in the oncology space, especially when it comes to differences based on developmental level and impact of culture on these outcomes. Further, they said that interventions are needed — such as education and support — to mitigate the potential negative outcomes that result from being a young cancer caregiver.
“The main takeaway of this study is that children often provide care when their parents are diagnosed with cancer, and this can be instrumental or emotional support. … They have unmet needs, primarily related to uncertainty and lack of open communication and dealing with emotions that can be addressed with targeted interventions,” Hendriks said.
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