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

Kirsten Lieshout, Joanne Oates, Anne Baker, Carolyn A. Unsworth, Ian D. Cameron, Julia Schmidt and Natasha A. Lannin
Additional contact information
Kirsten Lieshout: Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Victoria 3086, 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
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
Natasha A. Lannin: Occupational Therapy, School of Allied Health, La Trobe University, Melbourne, Victoria 3086, Australia

IJERPH, 2020, vol. 17, issue 17, 1-12

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.

Keywords: traumatic brain injury; caregivers; burden (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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