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Journal of Pediatric Oncology Nursing
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Exploring Family Management of Childhood Brain Tumor Survivors

Janet A. Deatrick, PhD, FAAN

Center for Health Disparities Research at the University of Pennsylvania School of Nursing, deatrick{at}nursing.upenn.edu

Erin K. Mullaney, MSN, RN, CRNP

Children’s Memorial Hospital in Chicago, Illinois

Kim Mooney-Doyle, MSN, CPNP-AC, CPON

University of Pennsylvania School of Nursing, Pediatric Oncology Nurse Practitioner Program.

Family management of childhood chronic conditions consists of 6 family factors: (1) the family’s view of the child’s daily life, (2) the impact of the condition on family life, (3) the difficulty of family life, (4) the family’s effort managing the child’s condition, (5) the family’s ability managing the child’s condition, and (6) parental mutuality. Recently, the Family Management Measure (FaMM), which measures family management of children with chronic conditions (excluding cancer), was validated. The purpose of this descriptive study was to examine the comparability of these 6 factors in families with childhood brain tumor survivors. First, 14 advanced practice nurses who are experts in neuro-oncology and survivorship rated items on the FaMM as relevant and clear to families of brain tumor survivors. Second, 22 cognitive interviews with parents of brain tumor survivors described family management as comparable with families of children with other chronic illness. In this report, 2 hypothetical, contrasting case studies of family management are used to illustrate family management within the context of brain tumor survivors.

Key Words: childhood brain tumor survivors • adolescent and young adults • family management

Journal of Pediatric Oncology Nursing, Vol. 26, No. 5, 303-311 (2009)
DOI: 10.1177/1043454209343210
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