The modifying role of caregiver burden on predictors of quality of life of caregivers of hospitalized chronic stroke patients

2015 ◽  
Vol 8 (4) ◽  
pp. 619-625 ◽  
Author(s):  
Yeon-Gyu Jeong ◽  
Jun-Pyo Myong ◽  
Jung-Wan Koo
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Chronic Stroke ◽  
Stroke Patients

scholarly journals Identifying unmet needs in long-term stroke care using in-depth assessment and the Post-Stroke Checklist – The Managing Aftercare for Stroke (MAS-I) study

2018 ◽  
Vol 3 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Benjamin Hotter ◽  
Inken Padberg ◽  
Andrea Liebenau ◽  
Petra Knispel ◽  
Sabine Heel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Community Dwelling ◽  
Social Needs ◽  
Interquartile Range ◽  
Stroke Patients ◽  
Post Stroke

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.

scholarly journals Social support and unmet social needs in life after stroke: a cross-sectional observational study

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Social Needs ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Degree Of Disability

Abstract Background: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability. Methods: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional observational study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs). Results: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden. Conclusions: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients’ needs.

scholarly journals Enriched Music-supported Therapy for chronic stroke patients: a study protocol of a randomised controlled trial

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jennifer Grau-Sánchez ◽  
Emma Segura ◽  
David Sanchez-Pinsach ◽  
Preeti Raghavan ◽  
Thomas F. Münte ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomised Controlled Trial ◽  
Upper Limb ◽  
Controlled Trial ◽  
Well Being ◽  
Chronic Stroke ◽  
Stroke Patients ◽  
Home Based ◽  
Randomised Controlled

Abstract Background Residual motor deficits of the upper limb in patients with chronic stroke are common and have a negative impact on autonomy, participation and quality of life. Music-Supported Therapy (MST) is an effective intervention to enhance motor and cognitive function, emotional well-being and quality of life in chronic stroke patients. We have adapted the original MST training protocol to a home-based intervention, which incorporates increased training intensity and variability, group sessions, and optimisation of learning to promote autonomy and motivation. Methods A randomised controlled trial will be conducted to test the effectiveness of this enriched MST (eMST) protocol in improving motor functions, cognition, emotional well-being and quality of life of chronic stroke patients when compared to a program of home-based exercises utilizing the Graded Repetitive Arm Supplementary Program (GRASP). Sixty stroke patients will be recruited and randomly allocated to an eMST group (n = 30) or a control GRASP intervention group (n = 30). Patients will be evaluated before and after a 10-week intervention, as well as at 3-month follow-up. The primary outcome of the study is the functionality of the paretic upper limb measured with the Action Research Arm Test. Secondary outcomes include other motor and cognitive functions, emotional well-being and quality of life measures as well as self-regulation and self-efficacy outcomes. Discussion We hypothesize that patients treated with eMST will show larger improvements in their motor and cognitive functions, emotional well-being and quality of life than patients treated with a home-based GRASP intervention. Trial registration The trial has been registered at ClinicalTrials.gov and identified as NCT04507542 on 8 August 2020.

scholarly journals Investigating the Mediatory Role of Hope and Shame in the Relationship between Caregiver Burden and Quality of Life of Patients with Cancer

2021 ◽  
Author(s):  
Touraj Shahvand ◽  
Mehdi Reza Sarafraz
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Negative Relationship ◽  
World Health ◽  
Future Research ◽  
Caregiving Burden ◽  
Health Organization ◽  
The Relationship

Abstract Objective Patients suffering from cancer need to receive care from their family; however, their family caregivers do this without preparation or training, so their involvement in patients’ care results in a caregiving burden that may affect patient’s hope and quality of life (QOL). Methods This study examines the effect of caregiving burden on the QOL of cancer patients (n = 100) with the mediatory role of hope and shame. To achieve this, Persian versions of Zarit Burden Interview, the World Health Organization QOL, Herth Hope Index, and Guilt and Shame Proneness Scale were used. Meanwhile, path regression analysis was implemented to analyze the relationship between caregiving burden and QOL. Results The results implied a relation among caregiver burden, hope, and QOL of patients diagnosed with cancer. It was found that there is a direct and negative relationship between caregiver burden and hope. In addition, there was an indirect and positive relationship between caregiver burden and QOL. Hope and QOL also had a high correlation. Besides, it was shown that there was a negative relationship between the shame experienced by patients and their hope and QOL. Conclusion caregiver burden was proved to be influential and negatively affected the factor for the QOL. Besides, patients’ hope decreases while caregiving burden increases; this will in turn affect patients’ recovery and their physical, mental, and cognitive functions. This study provides a foundation for future research in this critical area for oncology.

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