An exploration of families’ lived experiences of attention-related communication difficulties following traumatic brain injury

Abstract

Background. To explore families' experiences of living with someone who has attention and communication difficulties following a traumatic brain injury (TBI). Attention-related communication difficulties are common following TBI, but to date there is limited research into the effects on the family with respect to this cognitive communication difficulty. Methods. Recruitment of family members was completed through TBI community rehabilitation services. Inclusion criteria were that the family member needed to be living with an individual who had sustained a moderate to severe TBI at least 6 months prior to the study and that they had self-reported attention and communication difficulties. A semi-structured interview was completed. Qualitative interview data underwent reflexive thematic analysis with an inductive approach. Results. Eleven family members (including wives, mothers, a father, and a daughter) were interviewed. Two themes were generated that explored the lived experiences of the family. The first, adjustment to the new normal, outlines the changes and adaptations the families made to live with and support their loved one's attention and communication difficulties. The second theme, the load the family carries, reviews the two polarities of facilitation and support along with the burden the family endures following the injury. Conclusion. The themes outline how attention-related communication difficulties following TBI bring additional burden and challenges for families for years following the injury. Families report adapting their social lives and learning to implement specific strategies to improve their person's ability to interact and participate in conversations. Clinical implications are discussed.