Burden and preparedness amongst informal caregivers of adults with moderate to severe traumatic brain injury
- Lieshout, Kirsten, Oates, Joanne, Baker, Anne, Unsworth, Carolyn, Cameron, Ian, Schmidt, Julia, Lannin, Natasha
- Authors: Lieshout, Kirsten , Oates, Joanne , Baker, Anne , Unsworth, Carolyn , Cameron, Ian , Schmidt, Julia , Lannin, Natasha
- Date: 2020
- Type: Text , Journal article
- Relation: International Journal of Environmental Research and Public Health Vol. 17, no. 17 (2020), p. 1-12
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- Description: 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. © 2020 by the authors. Licensee MDPI, Basel, Switzerland.
- Description: 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.
- Authors: Lieshout, Kirsten , Oates, Joanne , Baker, Anne , Unsworth, Carolyn , Cameron, Ian , Schmidt, Julia , Lannin, Natasha
- Date: 2020
- Type: Text , Journal article
- Relation: International Journal of Environmental Research and Public Health Vol. 17, no. 17 (2020), p. 1-12
- Full Text:
- Reviewed:
- Description: 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. © 2020 by the authors. Licensee MDPI, Basel, Switzerland.
- Description: 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.
- Lannin, Natasha, Galea, Claire, Coulter, Megan, Gruen, Russell, Jolliffe, Laura, Ownsworth, Tamara, Schmidt, Julia, Unsworth, Carolyn
- Authors: Lannin, Natasha , Galea, Claire , Coulter, Megan , Gruen, Russell , Jolliffe, Laura , Ownsworth, Tamara , Schmidt, Julia , Unsworth, Carolyn
- Date: 2021
- Type: Text , Journal article
- Relation: International journal for quality in health care : journal of the International Society for Quality in Health Care Vol. 33, no. 1 (2021), p.
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- Description: BACKGROUND: Reorientation programmes have been an important component of neurotrauma rehabilitation for adults who suffer from post-traumatic amnesia (PTA) after traumatic brain injury (TBI); however, research testing the efficacy of acute programmes is limited. OBJECTIVE: This study aimed to determine if it is feasible to provide a standardized environmental reorientation programme to adults suffering from PTA after TBI in an acute care hospital setting, and whether it is likely to be beneficial. METHODS: We conducted a randomized controlled trial with concealed allocation and intention-to-treat analysis. A total of 40 participants suffering from PTA after TBI were included. The control group received usual care; the experimental group received usual care plus a standardized orientation programme inclusive of environmental cues. The primary outcome measure was time to emergence from PTA measured by the Westmead PTA Scale, assessed daily from hospital admission or on regaining consciousness. RESULTS: Adherence to the orientation programme was high, and there were no study-related adverse responses to the environmental orientation programme. Although there were no statistically significant between-group differences in time to emergence, the median time to emergence was shorter for those who received the standardized reorientation programme (9.0 (6.4-11.6) versus 13.0 (4.5-21.5) days). Multivariate analysis showed that the Glasgow Coma Scale (GCS) at scene (P = 0.041) and GCS at arrival at hospital (P = 0.0001) were significant factors contributing to the longer length of PTA. CONCLUSION: Providing an orientation programme in acute care is feasible for adults suffering from PTA after TBI. A future efficacy trial would require 216 participants to detect a between-group difference of 5 days with an alpha of 0.05 and a power of 80%. © The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Quality in Health Care. All rights reserved.
- Description: BACKGROUND: Reorientation programmes have been an important component of neurotrauma rehabilitation for adults who suffer from post-traumatic amnesia (PTA) after traumatic brain injury (TBI); however, research testing the efficacy of acute programmes is limited. OBJECTIVE: This study aimed to determine if it is feasible to provide a standardized environmental reorientation programme to adults suffering from PTA after TBI in an acute care hospital setting, and whether it is likely to be beneficial. METHODS: We conducted a randomized controlled trial with concealed allocation and intention-to-treat analysis. A total of 40 participants suffering from PTA after TBI were included. The control group received usual care; the experimental group received usual care plus a standardized orientation programme inclusive of environmental cues. The primary outcome measure was time to emergence from PTA measured by the Westmead PTA Scale, assessed daily from hospital admission or on regaining consciousness. RESULTS: Adherence to the orientation programme was high, and there were no study-related adverse responses to the environmental orientation programme. Although there were no statistically significant between-group differences in time to emergence, the median time to emergence was shorter for those who received the standardized reorientation programme (9.0 (6.4-11.6) versus 13.0 (4.5-21.5) days). Multivariate analysis showed that the Glasgow Coma Scale (GCS) at scene (P = 0.041) and GCS at arrival at hospital (P = 0.0001) were significant factors contributing to the longer length of PTA. CONCLUSION: Providing an orientation programme in acute care is feasible for adults suffering from PTA after TBI. A future efficacy trial would require 216 participants to detect a between-group difference of 5 days with an alpha of 0.05 and a power of 80%. © The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
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