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  • Informal care management after traumatic brain injury: perspectives on informal carer workload and capacity

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    McIntyrePUB645.pdf (542.6Kb)
    File version
    Accepted Manuscript (AM)
    Author(s)
    McIntyre, Michelle
    Ehrlich, Carolyn
    Kendall, Elizabeth
    Griffith University Author(s)
    Kendall, Elizabeth
    Year published
    2020
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    Abstract
    Purpose: Much of the support required to live in the community post-traumatic brain injury (TBI) is provided by informal carers. Understanding the nature of caregiving work is important to better support informal carers. This study explored the work being performed by informal carers, and factors impacting on their capacity to manage the workload. Method: Participants comprised 21 dyads each consisting of an adult with moderate to severe TBI and a nominated carer. Thematic analysis was done on semi-structured interviews with injured participants and carers during the 12-month period post-discharge from hospital. Results: ...
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    Purpose: Much of the support required to live in the community post-traumatic brain injury (TBI) is provided by informal carers. Understanding the nature of caregiving work is important to better support informal carers. This study explored the work being performed by informal carers, and factors impacting on their capacity to manage the workload. Method: Participants comprised 21 dyads each consisting of an adult with moderate to severe TBI and a nominated carer. Thematic analysis was done on semi-structured interviews with injured participants and carers during the 12-month period post-discharge from hospital. Results: Results revealed two main themes and eight subcategories: (1) The nature of informal care: describing informal care management work, (personal assistant work; care provider work; family support work; and emotional self-regulation work), and (2) Mediating factors that impacted people’s capacity to manage workload (carer intrinsic factors; injured person characteristics; family circumstances; and changes over time.) Conclusion: Rehabilitation providers supporting people following TBI need to focus on broad family contexts; understand the nature of work being undertaken, and carer capacity to carry out that work; and be aware of the unique and changing circumstances of families to better support informal carers.
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    Journal Title
    Disability and Rehabilitation
    DOI
    https://doi.org/10.1080/09638288.2018.1508511
    Copyright Statement
    © 2018 Taylor & Francis. This is an Accepted Manuscript of an article published by Taylor & Francis in Disability and Rehabilitation on DATEOFPUBLICATION, available online: https://doi.org/10.1080/09638288.2018.1508511
    Note
    This publication has been entered into Griffith Research Online as an Advanced Online Version.
    Subject
    Biomedical and clinical sciences
    Publication URI
    http://hdl.handle.net/10072/382667
    Collection
    • Journal articles

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