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Burden and Preparedness amongst Informal Caregivers of Adults with Moderate to Severe Traumatic Brain Injury

Author

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  • Kirsten Lieshout

    (Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Victoria 3086, Australia
    Kids Plus Foundation, Melbourne, Victoria 3216, Australia)

  • Joanne Oates

    (Evaluate, Sydney, NSW 2089, Australia)

  • Anne Baker

    (Occupational Therapy, School of Health, Federation University, Melbourne, Victoria 3000, Australia)

  • Carolyn A. Unsworth

    (Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Victoria 3086, Australia
    Occupational Therapy, School of Health, Federation University, Melbourne, Victoria 3000, Australia
    Department of Neuroscience, Monash University, Melbourne, Victoria 3004, Australia
    Department of Rehabilitation, Jönköping University, SE-551 11 Jönköping, Sweden)

  • Ian D. Cameron

    (John Walsh Institute for Rehabilitation Research, Faculty of Medicine and Health, The University of Sydney, St Leonards, NSW 2065, Australia)

  • Julia Schmidt

    (Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Victoria 3086, Australia
    Department of Physical Therapy, University of British Columbia, Vancouver, BC V6T 1Z4, Canada)

  • Natasha A. Lannin

    (Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Victoria 3086, Australia
    Department of Neuroscience, Monash University, Melbourne, Victoria 3004, Australia
    John Walsh Institute for Rehabilitation Research, Faculty of Medicine and Health, The University of Sydney, St Leonards, NSW 2065, Australia
    Occupational Therapy Department, Alfred Health, Melbourne, Victoria 3004, Australia)

Abstract

This study examined the patterns of informal (unpaid) caregiving provided to people after moderate to severe traumatic brain injury (TBI), explore the self-reported burden and preparedness for the caregiving role, and identify factors predictive of caregiver burden and preparedness. A cross-sectional cohort design was used. Informal caregivers completed the Demand and Difficulty subscales of the Caregiving Burden Scale; and the Mutuality, Preparedness, and Global Strain subscales of the Family Care Inventory. Chi-square tests and logistic regression were used to examine the relationships between caregiver and care recipient variables and preparedness for caregiving. Twenty-nine informal caregivers who reported data on themselves and people with a moderate to severe TBI were recruited (referred to as a dyad). Most caregivers were female ( n = 21, 72%), lived with the care recipient ( n = 20, 69%), and reported high levels of burden on both scales. While most caregivers ( n = 21, 72%) felt “pretty well” or “very well” prepared for caregiving, they were least prepared to get help or information from the health system, and to deal with the stress of caregiving. No significant relationships or predictors for caregiver burden or preparedness were identified. While caregivers reported the provision of care as both highly difficult and demanding, further research is required to better understand the reasons for the variability in caregiver experience, and ultimately how to best prepare caregivers for this long-term role.

Suggested Citation

  • Kirsten Lieshout & Joanne Oates & Anne Baker & Carolyn A. Unsworth & Ian D. Cameron & Julia Schmidt & Natasha A. Lannin, 2020. "Burden and Preparedness amongst Informal Caregivers of Adults with Moderate to Severe Traumatic Brain Injury," IJERPH, MDPI, vol. 17(17), pages 1-12, September.
  • Handle: RePEc:gam:jijerp:v:17:y:2020:i:17:p:6386-:d:407611
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    References listed on IDEAS

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    1. Bernard van den Berg & Pol Spauwen, 2006. "Measurement of informal care: an empirical study into the valid measurement of time spent on informal caregiving," Health Economics, John Wiley & Sons, Ltd., vol. 15(5), pages 447-460, May.
    2. Commission, Productivity, 2011. "Disability Care and Support," Inquiry Reports, Productivity Commission, Government of Australia, volume 0, number 54, July.
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    1. Shannon B. Juengst & Paul B. Perrin & Daniel W. Klyce & Therese M. O’Neil-Pirozzi & Susan Herrera & Brittany Wright & Jean Lengenfelder & Kirk Lercher & Librada Callender & Juan Carlos Arango-Lasprill, 2022. "Caregiver Characteristics of Adults with Acute Traumatic Brain Injury in the United States and Latin America," IJERPH, MDPI, vol. 19(9), pages 1-11, May.

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