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Exploring the experience of sleep and fatigue in male and female adults over the 2 years following traumatic brain injury: a qualitative descriptive study
  1. Alice Theadom1,2,
  2. Vickie Rowland1,2,
  3. William Levack3,
  4. Nicola Starkey4,
  5. Laura Wilkinson-Meyers5,
  6. Kathryn McPherson1,6
  7. on behalf of the TBI Experiences Group
    1. 1Person Centred Research Centre, Auckland University of Technology, Auckland, New Zealand
    2. 2National Institute for Stroke and Applied Neuroscience, Auckland University of Technology, Auckland, New Zealand
    3. 3Rehabilitation Teaching and Research Unit, University of Otago, Wellington, New Zealand
    4. 4School of Psychology, University of Waikato, Hamilton, New Zealand
    5. 5School of Population Health, University of Auckland, Auckland, New Zealand
    6. 6The Health Research Council of New Zealand, Auckland, New Zealand
    1. Correspondence to Alice Theadom; alice.theadom{at}aut.ac.nz

    Abstract

    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.

    • Fatigue
    • Brain Injury
    • QUALITATIVE RESEARCH
    • Longitudinal

    This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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