Issues in families of children with brain tumors

To determine the needs of children with brain tumors and their parents/guardians and siblings during the six stages of illness: diagnosis, hospitalization, posthospitalization, adjuvant treatment, recurrence, and terminal or reported cured.

A cross-sectional, qualitative study of families using focus group methodology.

Families with a child diagnosed with a brain tumor recruited from the practices and clinics of several major teaching hospitals in the New York metropolitan area. Families traveled as far as 70 miles for the group meeting. Varying ethnic groups and family structures were represented.

Groups were separated into parents/guardians, siblings, and affected children. The children's groups were divided further into age 10 and older and younger than age 10. During the focus group, moderators followed an outline of topics identified from family interviews, the literature, and content experts that were important to families in similar situations. An assistant moderator took detailed notes, and the entire group meeting was audiotaped. Information was transcribed and analyzed using qualitative analysis techniques.

11 focus groups met involving 7 affected children, 24 adults, and 19 siblings. Issues identified as important by the group members fell into four categories: Interaction With Healthcare Providers, Medical Information/Education, Healthcare Utilization and Treatment, and Psychosocial Issues. The needs of family members differed at various stages of the illness.

The particular impact of the four major areas of concern differed by family role and stage of illness.

To provide optimal care, healthcare professionals must be aware of the family's composition and support systems and the impact that the illness has on individual family members at each stage of illness.