Pediatric brain tumors among urban children: Disabilities and family issues

In caring for a child with a brain tumor, families face financial as well as psychosocial burdens associated with treatment. The children may experience long term disability as a result of treatment. The purpose of this pilot study is to examine the nonmedical and indirect costs and the psychosocial issues for families in caring for their child with a brain tumor. The study population includes urban families with a child undergoing treatment and follow up care at the Neuro-Oncology Program at Children's Hospital of Michigan. The ages of the children range from <1 - 18 years; the majority of the families reside in the metropolitan area. Approximately 25 percent of the families are from racial/ethnic minorities. An investigator-initiated survey instrument has been developed. Face-to-face interviews with parents are conducted at the Neuro-Oncology clinic. The survey instrument includes variables on family characteristics, medical costs, nonmedical costs (e.g. parking, meals, and travel), indirect costs (e.g. lost time with other family members) and psychosocial issues (stress, anxiety). The Parenting Stress Index is a component of the interview. Data collection is ongoing; 40 families have completed study participation. Families have reported the following: family activities eliminated due to caregiving demands (70%); reduced activities for siblings (35%); more expenses on credit cards (43%); missed utility payments (33%). Nearly half of the parents have high parental stress levels (48%). The implications for public health professionals in supporting families with multidisciplinary community-based resources will be highlighted.