Objectives

To explore the experience of fatigue and sleep difficulties over the first 2 years after traumatic brain injury (TBI).

Design

Longitudinal qualitative descriptive analysis of interviews completed as part of a larger longitudinal study of recovery following TBI. Data relating to the experience of fatigue and/or sleep were extracted and coded by two independent researchers.

Setting

Community-based study in the Hamilton and Auckland regions of New Zealand.

Participants

30 adult participants who had experienced mild, moderate or severe brain injury within the past 6 months (>16 years of age). 15 participants also nominated significant others to take part. Interviews were completed at 6, 12 and 24 months postinjury.

Results

Participants described feeling unprepared for the intensity, impact and persistent nature of fatigue and sleep difficulties after injury. They struggled to learn how to manage their difficulties by themselves and to adapt strategies in response to changing circumstances over time. Four themes were identified: (1) Making sense of fatigue and sleep after TBI; (2) accepting the need for rest; (3) learning how to rest and; (4) need for rest impacts on ability to engage in life.

Conclusions

Targeted support to understand, accept and manage the sleep and fatigue difficulties experienced may be crucial to improve recovery and facilitate engagement in everyday life. Advice needs to be timely and revised for relevance over the course of recovery.