The needs of family members of severe traumatic brain injured patients during critical and acute care: a qualitative study

Abstract

Traumatic brain injury (TBI) is a devastating injury for both patients and their family members. The goal of this study is to identify the needs expressed by family members, as patients with severe brain injury progress through their recovery. A qualitative study was undertaken with 25 family members who were associated with 15 injured relatives. Data are reported from 44 interviews conducted at two time periods: discharge from ICLI (Time 1) and discharge from acute care facility to home or rehabilitation (Time 2). The findings are part of a larger mixed method study of both qualitative and quantitative data collected over three time periods. Family members identified a variety of need during the acute hospitalization period. Thematic analysis at 1 identified four main themes that described the trajectory of the families' experiences: getting the news, uncertainty, making sense of the news and moving on. At Time 2, themes of the family experience included uncertainty, looking for progress, transition and letting go/building a new connection. Themes that identified the needs of families included managing life, involvement in care, and holding on to hope. Support required by the family included the need for information, professional support and community support. Families had intensive needs in the acute phase of the injury and their needs changed over time. Findings of the study will assist neuroscience nurses in understanding their role in providing for the needs of families of TBI patients.