scholarly journals Caregiver Burden in a Culturally Diverse Memory Clinic Population: The Caregiver Strain Index-Expanded

2021 ◽  
pp. 1-8
Author(s):  
Sanne Franzen ◽  
Willem S. Eikelboom ◽  
Esther van den Berg ◽  
Lize C. Jiskoot ◽  
Judy van Hemmen ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Culturally Diverse ◽  
Spousal Caregivers ◽  
Caregiver Strain ◽  
Memory Clinic ◽  
Strain Index ◽  
Caregiver Support ◽  
Additional Information ◽  
Dutch Patient ◽  
High Level

<b><i>Introduction:</i></b> Although qualitative studies have highlighted substantial barriers to dementia diagnosis and care in culturally diverse populations in Europe, quantitative studies examining the level of caregiver burden in these populations have been lacking thus far and are urgently needed. <b><i>Methods:</i></b> We compared the caregiver burden levels on the Caregiver Strain Index (CSI)-Expanded of 63 culturally diverse patient-caregiver dyads from a multicultural memory clinic with 30 native Dutch patient-caregiver dyads and examined the association between caregiver burden and determinants of burden. <b><i>Results:</i></b> Informal caregivers in the multicultural memory clinic cohort experienced a high level of caregiver burden (mean CSI-score multicultural cohort: 6.1 [SD: 3.3]; mean CSI-score native Dutch cohort: 4.8 [SD: 3.2]). Burden was significantly associated with impairment on proxy-rated and objective measures of cognitive functioning, such as the Informant Questionnaire on Cognitive Decline and the Rowland Universal Dementia Assessment Scale, and with instrumental activities of daily living. Burden was the highest in spousal caregivers. The positive subscale of the CSI-Expanded provided limited additional information. <b><i>Conclusion:</i></b> Caregivers of culturally diverse patients experience a high level of caregiver burden, in particular at more advanced disease stages. This study highlights the need to screen culturally diverse caregivers in European memory clinics on caregiver burden to identify those in need of caregiver support.

A pilot study assessing the burden of caregivers of elderly patients at University College Hospital UCH.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 12-12
Author(s):  
Eunice Nkechi Omoyeni
Keyword(s):  
Elderly Patients ◽  
Caregiver Burden ◽  
Demographic Data ◽  
Age Groups ◽  
Chronically Ill ◽  
Caregiver Strain ◽  
Emotional States ◽  
Strain Index ◽  
College Hospital ◽  
The Impact

12 Background: Caregiver burden is defined as “the perception of stress and fatigue caused by the sustained effort required in caring for persons with chronic illness or other conditions with special needs for care”. It is a type of stress or strain experienced by caregivers, which is directly/ indirectly related to the challenges/problems they face as a result of the health status of the person cared for. Stucki et al. 2000, described the carers burden as “strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member”. Caregiver burden is response to physical, psychological, emotional, social, and financial stressors associated with the caregiving in a multidimensional way. It is the psychosocial and physical reaction to the imbalance of demands placed on the caregiver by various factors, including personal time, multiple roles, physical and emotional states, financial resources, and formal care resources. The caregiver's perception of the burden, rather than the perception of other family members or healthcare providers, determines the impact of this burden on his or her life. Methods: Caregivers of elderly patients attending the geriatric and medical outpatient’s clinics at UCH completed a caregiver strain index scale, over a 2 month period. Demographic information regarding gender, age, were obtained and scaled questions were ticked. Data was analysed using IBM SPSS statistics 21. Results: Eighty-five participants completed the caregiver strain index scale. The socio-demographic data described age and gender. Most participants fell in the 31 - 40 and 41 - 50 age groups (41.2% for each group). Fifty-eight (68.2%) were females while 27 (31.8%) were males. Most common strain variable was demand on time with percentage 54.1% (46). Twenty-nine (34.1%) had moderate level of stress (4 - 6) , while 32 (37.6%) had mild level of stress, and 17 (20.0%) had high level of stress. One participant had the highest score index was 11 while 13 (15.3%) had scores of 3 and 13 (15.3%) had scores of 5. Conclusions: The study showed that caregivers of elderly patients have high burden in the demand on their time and need supportive/collaborative systems which includes palliative care to help with the task of caring for these elderly ones.

scholarly journals GAMBARAN TEKANAN DAN BEBAN YANG DIALAMI OLEH KELUARGA SEBAGAI CAREGIVER PENDERITA PSIKOTIK DI RSJ PROF. H.B. SA’ANIN PADANG

Jurnal Ecopsy ◽  
2017 ◽  
Vol 3 (3) ◽  
Author(s):  
Nelia Afriyeni ◽  
Sartana Sartana
Keyword(s):  
Caregiver Burden ◽  
Caregiver Strain ◽  
Strain Index ◽  
Zarit Burden Interview ◽  
Bahasa Indonesia

ABSTRAK Penelitian ini bertujuan untuk melihat gambaran tekanan (strain) dan beban (burden) pada caregiver penderita psikotik di RSJ Prof. HB Sa’anin Padang. Subjek penelitian ini berjumlah 150 orang caregiver yang melakukan kontrol rutin untuk keluarganya yang menderita psikotik. Data diperoleh dengan menggunakan skala The Modiffied Caregiver Strain Index (MCSI) dan Zarit Burden Interview (ZBI) versi bahasa Indonesia dan telah diujicobakan kembali dengan nilai koefisien reliabilitas (𝛼) 0,877 untuk MCSI dan 0,907 untuk ZBI. Data penelitian yang diperoleh kemudian diolah secara deskriptif untuk menggambarkan dan mengkategorisasikan tingkat tekanan (strain) dan beban (burden) yang dirasakan oleh caregiver.  Hasil yang didapatkan menunjukkan bawa mayoritas subjek (70%) memiliki skor tekanan caregiver berada pada kategori normal, sedangnya sisanya 30% berada pada kategori tinggi. Sementara untuk skor beban caregiver mayoritas berada pada kategori ringan (43,3%), selanjutnya pada kategori sedikit atau tidak ada beban sebanyak 38%, dan 16,7% pada kategori sedang, serta 2% pada kategori berat. Selain itu, dari data demografi subjek terlihat bahwa usia caregiver terbanyak berada pada usia 39-58 tahun (46%), dan mayoritas caregiver perempuan (66%). Pendidikan subjek paling banyak adalah SMA (33,3%), dan jenis gangguan psikotik terbanyak yang dialami salah satu anggota keluarganya adalah skizofrenia paranoid (58,7%). Kata kunci: Tekanan (Strain), Beban (Burden), Caregiver, Caregiver Strain, Caregiver Burden, Psikotik

scholarly journals Escalas para avaliação da sobrecarga de cuidadores de pacientes com Acidente Vascular Encefálico

2012 ◽  
Vol 65 (5) ◽  
pp. 839-843 ◽  
Author(s):  
Ana Railka de Souza Oliveira ◽  
Alice Gabrielle de Sousa Costa ◽  
Vanessa Emille Carvalho de Sousa ◽  
Thelma Leite de Araujo ◽  
Viviane Martins da Silva ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Caregiver Strain ◽  
Strain Index ◽  
Stress Scale ◽  
Zarit Burden Interview ◽  
Sense Of Competence ◽  
Burden Scale

O objetivo do estudo foi avaliar as escalas disponíveis na literatura para medir a sobrecarga de cuidadores de pacientes acometidos por acidente vascular encefálico. Realizou-se uma revisão bibliográfica nas três bases de dados: LILACS, CINAHL e SCOPUS. Selecionaram-se 23 trabalhos e identificaram-se 24 diferentes escalas. Destas, as mais citadas foram o Caregiver Strain Index, a Caregiver Burden Scale, a Caregiver Reaction Assessment, o Sense of Competence Questionnaire, a Relatives Stress Scale e a Zarit Burden Interview. O uso de escalas para mensurar a sobrecarga é uma ferramenta importante para avaliar o contexto no qual está inserido o cuidador, entretanto é mais fidedigno quando associado a outros instrumentos de mensuração. Portanto, é fundamental pesquisas de validação de escalas para essa população.

Hybrid-Data Approach for Estimating Trip Purposes

2021 ◽  
pp. 036119812110184
Author(s):  
Xiaoling Luo ◽  
Adrian Cottam ◽  
Yao-Jan Wu ◽  
Yangsheng Jiang
Keyword(s):  
Transportation Systems ◽  
Data Driven ◽  
Trip Purpose ◽  
Additional Information ◽  
Point Of Interest ◽  
Average Accuracy ◽  
Hybrid Data ◽  
Added Benefit ◽  
Data Source ◽  
High Level

Trip purpose information plays a significant role in transportation systems. Existing trip purpose information is traditionally collected through human observation. This manual process requires many personnel and a large amount of resources. Because of this high cost, automated trip purpose estimation is more attractive from a data-driven perspective, as it could improve the efficiency of processes and save time. Therefore, a hybrid-data approach using taxi operations data and point-of-interest (POI) data to estimate trip purposes was developed in this research. POI data, an emerging data source, was incorporated because it provides a wealth of additional information for trip purpose estimation. POI data, an open dataset, has the added benefit of being readily accessible from online platforms. Several techniques were developed and compared to incorporate this POI data into the hybrid-data approach to achieve a high level of accuracy. To evaluate the performance of the approach, data from Chengdu, China, were used. The results show that the incorporation of POI information increases the average accuracy of trip purpose estimation by 28% compared with trip purpose estimation not using the POI data. These results indicate that the additional trip attributes provided by POI data can increase the accuracy of trip purpose estimation.

scholarly journals Caregiver strain in progressive supranuclear palsy and corticobasal syndromes

2021 ◽  
Author(s):  
Lukas Kellermair ◽  
Alexandra Fuchs ◽  
Christian Eggers ◽  
Petra Schwingenschuh ◽  
Mariella Kögl ◽  
...  
Keyword(s):  
Progressive Supranuclear Palsy ◽  
Caregiver Burden ◽  
Mental Health Problems ◽  
Family Relationship ◽  
Caregiver Strain ◽  
High Educational Level ◽  
Family Status ◽  
Related Factors ◽  
Richardson’S Syndrome ◽  
High Educational

AbstractProgressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) progress relentlessly and lead to a need for care. Caregiving is often burdensome. Little is known about the course of caregiver burden (CB) in PSP and CBS patients. Longitudinal analysis of CB in family members caring for PSP and CBS patients. Single-center longitudinal pilot study in 68 newly diagnosed patients with probable PSP and CBS (52 Richardson’s syndrome; 1 progressive gait freezing of PSP; 15 CBS). Demographic, educational, occupational parameters, family status, motor functions (UPDRSIII, Hoehn and Yahr Score, Tinetti) and neuropsychological performance (CERAD Plus, Frontal Assessment Battery) were assessed, as well as behavioral and neuropsychiatric impairments (Frontal Behavioral Inventory, Neuropsychiatric Inventory), activities of daily living (ADL) and caregiver burden using the Caregiver Strain Index (CSI), in most patients also the Zarit Burden Interview (ZBI). Patients were followed up every 6 months for up to 2 years. Caregivers reported mild to moderate CB at baseline, which increased by 25–30% in 2 years and was significantly greater in PSP than in CBS. Risk for mental health problems increased over time, especially in female caregivers (depression). Important patient-related factors were apathy, aspontaneity, depression, irritability, disorganization, poor judgment, impairment of language, impairments in ADL, a high educational level of the patient and close family relationship. Behavioral symptoms and impaired ADL are the main patient-related factors of CB in PSP and CBS. CB can be severe and needs to be assessed repeatedly from the time of diagnosis to provide comprehensive support.

Exploration of Parkinson’s Disease Symptomatology Subtypes From the Caregiver Perspective: Implications for Caregiver Burden, Depression, and Anxiety

2021 ◽  
pp. 089198872110491
Author(s):  
Sarah K. Lageman ◽  
Emily K. Donovan ◽  
Teresita Villaseñor ◽  
Paul B. Perrin
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Caregiver Burden ◽  
Rating Scale ◽  
Caregiver Support ◽  
Patient Health ◽  
Disease Rating ◽  
Symptom Patterns ◽  
Caregiver Anxiety ◽  
The U.S

Background: While research has demonstrated associations between Parkinson’s disease (PD) severity and caregiver burden and emotional functioning, less is known about the associations between specific PD symptom patterns and caregiver functioning. Objective: The purpose of the current study was to explore symptomatology subtypes in PD from the caregiver perspective in the U.S. and Mexico and to determine whether caregiver burden, depression, or anxiety differed by PD symptomatology subtype. Methods: Two hundred fifty-three caregivers ( M age = 59.9) completed Parts I and II of the Movement Disorder Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS), the Zarit Burden Interview, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7 scales. Results: Cluster analysis using domains from the MDS-UPDRS revealed 5 symptomatology subtypes: pain/motor predominant, low symptoms, severe diffuse symptoms, moderate restricted symptoms with speech/oral predominant, and mood predominant. Caregiver burden was greatest for caregivers of individuals in the severe diffuse symptom and moderate restricted symptoms with speech/oral predominant clusters. High caregiver depression and caregiver anxiety were observed in all clusters other than the low symptoms cluster. There were no site by cluster interactions, suggesting that symptom patterns contribute to caregiver functioning in similar ways in the U.S. and Mexico. Conclusions: This data-driven analysis revealed 5 symptomatology subtypes of PD from caregivers’ perspectives and highlighted the need for treatments and interventions based on predominant PD symptom expression. Importance of caregiver support across various symptomatology expressions, and particularly on specialist treatment for predominant speech/oral difficulties was recommended.

Abstract TP365: Design of a Mobile-friendly Website to Reduce Stroke Caregiver Burden: a Focus Group Study

Stroke ◽  
2017 ◽  
Vol 48 (suppl_1) ◽  
Author(s):  
Michelle R Caunca ◽  
Maria V Diaz ◽  
Andres De Leon-Benedetti ◽  
Gregory Hartley ◽  
Sara J Czaja ◽  
...  
Keyword(s):  
Focus Groups ◽  
Caregiver Burden ◽  
Short Form ◽  
The United States ◽  
Internet Technology ◽  
User Centered Design ◽  
Focus Group Study ◽  
Caregiver Support ◽  
Behavioral Issues ◽  
Burden Scale

Background: Stroke is a leading cause of disability in the United States. Family members often have to assume the role of informal caregiver. Despite an abundance of resources, caregiver burden continues to be a major issue, leading to negative outcomes such as depression. Objective: To characterize the needs of stroke caregivers in order to inform the design of a mobile-friendly website intervention. We hypothesized that a website intervention, designed using a user-centered design approach, will help equip caregivers for the caregiving role and reduce associated caregiver burden. Methods: Focus groups with caregivers of stroke patients were conducted in English (N=3) and Spanish (N=4) to gather data on major obstacles experienced by caregivers. Participants were also asked about the challenging aspects of caregiving and their use of mobile devices. Results: Of seven total caregivers (86% Hispanic, 100% female, mean [SD] age=60 [9] years), 86% were smartphone users. The median (interquartile range) score on the short form Zarit Burden scale was 18 (12-20), indicating elevated caregiver burden in our sample. Across all participants, 100% cited lack of training as a major challenge, 86% cited financial difficulties and dealing with patient cognitive issues, 71% reported physical and emotional challenges, 43% participants cited time constraints and patient behavioral issues, and 29% reported problems with patient communication and acceptance of their situation. Using these findings, we designed a Stroke Caregiver Support System prototype by collecting existing resources from publically available sources based on the issues identified by our focus groups. Website usability testing was conducted to gather feedback caregivers and further refine our intervention. Conclusions: We plan a small pilot test of this intervention in our community to measure its usability and gather more feedback on acceptability and usefulness of the intervention. Given the prevalence of mobile and internet technology, we believe that a mobile-friendly website may be a practical and easily accessible tool for caregivers as they navigate their new roles.

P2-553: CAREGIVER BURDEN AND SOLUTION FOCUSED BRIEF THERAPY IN THE MULTICULTURAL MEMORY CLINIC

2006 ◽  
Vol 14 (7S_Part_17) ◽  
pp. P949-P949
Author(s):  
Sanne Franzen ◽  
Esther van den Berg ◽  
Rozemarijn L. van Bruchem-Visser ◽  
Marleen Harkes ◽  
Frank Jan de Jong ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Brief Therapy ◽  
Memory Clinic ◽  
Solution Focused Brief Therapy ◽  
Solution Focused

The Effect of National Family Caregiver Support Program Services on Caregiver Burden

2020 ◽  
pp. 073346481990109
Author(s):  
Katarzyna A. Zebrak ◽  
Joanne R. Campione
Keyword(s):  
Survey Data ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Respite Care ◽  
Support Program ◽  
Minimum Amount ◽  
Educational Services ◽  
Difference In Differences ◽  
Caregiver Support ◽  
National Family

Extant evidence on the effectiveness of caregiver programs in alleviating caregiver burden is mixed, underscoring the need for further investigations. This study evaluated the effect of the National Family Caregiver Support Program (NFCSP) educational services and respite care on caregiver burden. We used survey data from caregivers assigned to program ( n = 491) or comparison ( n = 417) group based on their reported use of NFCSP services. Adjusted difference-in-differences (DiD) analysis found an increase in mean burden scores for both groups from baseline to 6 or 12 months. Among program caregivers receiving ≥4 hr of NFCSP respite care per week ( n = 307) and matched comparisons ( n = 370), burden scores decreased slightly for program caregivers (−0.095 points), but increased for comparison caregivers (+0.145 points). The DiD (0.239 points) was not statistically significant. More research is needed to determine the minimum amount of respite care needed to positively impact caregiver burden.

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