Much is left unspoken: Self‐reports from families in pediatric oncology

Background Communication about illness‐related subjects is complex and difficult. To support entire families in pediatric oncology, health care professionals need to know what family members think, but leave unspoken. The aim of this study was to explore how families in pediatric oncology experienced illness‐related information and communication with professionals and within the family. Procedure A cross‐sectional web survey was used. Families were recruited from one pediatric oncology center in Sweden, 2‐3 months after diagnosis. One hundred eighteen family members (ill children, siblings, and parents) representing 27 families filled out age‐adapted surveys. Results Eighty‐six percent of the parents and 71% of the siblings reported that they had not received enough or any information about how the cancer and its treatment could affect the child's psychological health. The families reported that they did not dare ask professionals questions about psychosocial issues and future‐related subjects. Nor did they talk with one another, even though 55% of the parents and 24% of the children wanted to reveal more about how they felt to someone in the family. The parents reported the lowest family communication, and few families had all members reporting the same perception of family communication. Conclusions Much is still left unspoken in pediatric oncology and the needs of the families are prominent. Assessments of each family member's needs might form a basis for professionals to give each person adequate information and family support. An increased awareness in families about family members’ different needs might lead to mutual understanding.