Burden and preparedness amongst informal caregivers of adults with moderate to severe traumatic brain injury
journal contributionposted on 22.01.2021, 05:12 authored by K Lieshout, J Oates, A Baker, Carolyn Unsworth, ID Cameron, Julia Schmidt, Natasha LanninNatasha Lannin
© 2020 by the authors. Licensee MDPI, Basel, Switzerland. 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.
Data collection for this project was supported by the NSW Lifetime Care and Support Scheme (now iCare Foundation). N.A.L. is supported by a Future Leader Fellowship (Award ID 102055) from the National Heart Foundation of Australia.
JournalInternational Journal of Environmental Research and Public Health
Rights StatementThe Author reserves all moral rights over the deposited text and must be credited if any re-use occurs. Documents deposited in OPAL are the Open Access versions of outputs published elsewhere. Changes resulting from the publishing process may therefore not be reflected in this document. The final published version may be obtained via the publisher’s DOI. Please note that additional copyright and access restrictions may apply to the published version.
Science & TechnologyLife Sciences & BiomedicineEnvironmental SciencesPublic, Environmental & Occupational HealthEnvironmental Sciences & Ecologytraumatic brain injurycaregiversburdenASSESSING SUPPORT NEEDSROLE STRAINCARESCALEMUTUALITYPEOPLERELIABILITYPREDICTORSDEMENTIADEMANDHumansCohort StudiesCross-Sectional StudiesAdultCaregiversFemaleMaleSelf ReportBrain Injuries, TraumaticCaregiver BurdenToxicology