In the largest study of its kind, researchers led by Janet A. Deatrick, PhD, RN, FAAN, the Shearer Endowed Term Chair in Healthy Community Practices and Professor of Nursing at the University of Pennsylvania School of Nursing in Philadelphia, have learned that both family functioning and the health of survivors are key indicators of how caregivers judge their competence in caring for adolescent family members with brain tumors, according to a news release.
Deatrick and Wendy Hobbie, MSN, RN, CRNP, FAAN, as well as other colleagues at The Children’s Hospital of Philadelphia, recently published an article about the study, Competence in caregivers of adolescent and young adult childhood brain tumor survivors, in the journal Health Psychology.
Approximately 26,000 children in the U.S. under age 19 are survivors of brain or central nervous system tumors. These adolescents and young adults, who have complex medical conditions, often are cared for by family members, according to the release.
Instead of being predicted by caregiver demand or burden as hypothesized, this study revealed that caregivers assessment of their competence or role mastery is influenced most strongly by the functioning of their family and how they viewed the quality of life of the survivor, Deatrick, co-director of Penn Nursings Center for Health Equity Research, said in the release. Researchers and medical personnel can target either family functioning or the health of the survivor as means of improving the competence of caregivers.
The study was conducted with the help of a grant from the National Institute of Nursing Research of the National Institutes of Health, and is expected to enhance family caregiving research and support of survivors, their caregivers and families, according to the release.