The lived experience of families of children who are failing to thrive

OBJECTIVE: This study was conducted to explore the experience of families of children who were failing to thrive. The aim of the study was not to generalize the findings but to generate a rich description of the phenomenon of living with children who were not growing as expected. BACKGROUND: Although failure to thrive has been found to have long-term negative implications for children there is little information available on how families experience this phenomenon. METHODS: A purposive sample of 12 families with children who were failing to thrive from multiple known and unknown reasons were interviewed (21 participants: mothers, fathers, and grandmothers). FINDINGS: Twenty-seven subthemes emerged from the descriptions provided by the participants and these were then grouped into seven themes. Families spoke of an all-encompassing fear with which they lived. They were affected by the comparisons of the children made by others and themselves. In the process of seeking care for the children, the families described how their concerns often were not heard by the professionals. They felt blamed for their children's growth failure and this added to a sense of isolation and helplessness. Nurses and doctors who listened and acknowledged that they trusted the family were respected and valued. Families felt they were then valuable members of the care team. Regardless of the difficulties, families described how they adapted and persevered in their attempt to provide as normal a life as possible for the children. They considered themselves the experts who best knew the children and continued to provide the complex care that was needed. CONCLUSIONS: The research suggests that health care professionals need to be more aware of the impact of their words and actions on families.