Can a couples’ intervention reduce unmet needs and caregiver burden after brain injury?

2020 ◽  
Vol 65 (4) ◽  
pp. 409-417
Author(s):  
Kristin M. Graham ◽  
Jeffrey S. Kreutzer ◽  
Jennifer H. Marwitz ◽  
Adam P. Sima ◽  
Nancy H. Hsu
2019 ◽  
Vol 100 (12) ◽  
pp. e204
Author(s):  
Kristin Graham ◽  
Jeffrey Kreutzer ◽  
Jennifer Marwitz ◽  
Adam Sima ◽  
Nancy Hsu

2018 ◽  
Vol 3 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Benjamin Hotter ◽  
Inken Padberg ◽  
Andrea Liebenau ◽  
Petra Knispel ◽  
Sabine Heel ◽  
...  

Introduction Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. Methods We invited long-term stroke patients from two previous acute clinical studies ( n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. Results Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4–12.75) consented to assessment (median 41 months (interquartile range 36–50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1–3), EuroQoL index value was 0.81 (median; interquartile range 0.70–1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity ( p = 0.008) and social needs ( p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood ( p < 0.001), impaired cognition ( p = 0.015), social needs ( p = 0.005) and caregiver burden ( p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). Conclusion These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted. Clinical Trial Registration: clinicaltrials.gov NCT02320994.


2016 ◽  
Vol 53 (6) ◽  
pp. 681-692 ◽  
Author(s):  
Karen L. Saban ◽  
Joan M. Griffin ◽  
Amanda Urban ◽  
Marissa A. Janusek ◽  
Theresa Louise-Bender Pape ◽  
...  

Concussion ◽  
2020 ◽  
Vol 5 (3) ◽  
pp. CNC77
Author(s):  
Kenneth J Ciuffreda ◽  
Barry Tannen ◽  
Penelope S Suter

Author(s):  
Kirsten Lieshout ◽  
Joanne Oates ◽  
Anne Baker ◽  
Carolyn A. Unsworth ◽  
Ian D. Cameron ◽  
...  

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.


2015 ◽  
Vol 50 (4) ◽  
pp. 445-452 ◽  
Author(s):  
Richard Harding ◽  
Wei Gao ◽  
Diana Jackson ◽  
Clare Pearson ◽  
Joanna Murray ◽  
...  

2017 ◽  
Vol 32 (4) ◽  
pp. 881-890 ◽  
Author(s):  
Sonja McIlfatrick ◽  
Leanne C Doherty ◽  
Mary Murphy ◽  
Lana Dixon ◽  
Patrick Donnelly ◽  
...  

Background: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. Aim: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. Design: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. Participants: Advanced heart failure patients ( n = 112) and their caregivers ( n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers ( n = 20) were purposively recruited from phase 1, and bereaved caregivers ( n = 10) were purposively recruited via voluntary organisation, social media and email. Results: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients’ depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. Conclusion: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden.


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