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caregiver Burden in the Management of Frail Elderly Patients with Diabetes in Internal Medicine

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Health 2018年第10期10卷 1383-1391页

作者： Jose Miguel Segui Ripoll Vicente Jesús Segui Llinares Miguel J.Reig Pérez Carles García Cervera Juan Manuel Núnez Cruz Pedro Esteve Atiénzar Sara Banón Escandell Alberto López Serrano María Dolores Jover Ríos Juan Méndez Mora Carmen Segui Pérez María Josefa Navarro Navarro Pablo Roig Rico Department of Internal Medicine University Hospital of San JuanAlicanteSpain Department of Clinical Medicine Miguel Hernández UniversityElcheSpain Institute of Design and Manufacturing Polytechnic University of ValenciaCampus of AlcoyAlicanteSpain Department of Internal Medicine Hospital La Vega Baja of OrihuelaAlicanteSpain Secondary School Marist Brothers High SchoolAlicanteSpain Primary Medicine BenillobaSpain

Aim: Advanced age and fragility often lead to dependence, making caregiver assistance necessary for performing the activities of daily living. Patients with diabetes are characterized by an elevated presence of comorbidities and subsequent frailty—a relevant consideration when making decisions regarding treatment goals. Health professionals may overlook the caregiver experience when assessing the circumstances surrounding frail elderly patients with diabetes, but this factor can have a large impact on relevant caregiver and patient outcomes. Methods: An observational, retrospective study was carried out to assess the impact of improved management in diabetes on caregiver burden. We assessed patients’ performance of activities of daily living using the Barthel scale. Our primary outcome was caregiver burden, as assessed using the Zarit scale. Results: At baseline, 81.4% of the caregivers reported severe overburden (>55 points on the Zarit scale). At three months, the proportion of caregivers reporting this level of burden had dropped to 76.7% and remained stable at six months (77.1%). In contrast, 8.5% of the caregivers reported moderate overburden (47 to 55 points) at baseline, compared to 13.3% at three months and 12.5% at six. The proportion of caregivers reporting no overburden (Conclusions: caregiver burden remained persistently high, decreasing only slightly after six months.

关键词： Elderly Diabetes Frail Patient Overload caregiver

Association between caregiver Quality of Life and the Care Provided to Persons with Alzheimer’s Disease: Systematic Review

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Advances in Alzheimer's Disease 2014年第1期3卷 44-53页

作者： Afeez Abiola Hazzan Harry Shannon Jenny Ploeg Parminder Raina Mark Oremus Department of Clinical Epidemiology and Biostatistics McMaster University Hamilton Canada School of Nursing Faculty of Health Sciences McMaster University Hamilton Canada

We reviewed the literature to examine whether an association exists between the quality of life (QoL) of primary informal Alzheimer's disease (AD) caregivers and the level and quality of care that these caregivers provide to their loved ones with AD. We obtained studies focusing on the care that these caregivers provide for their family members with AD. Our outcome of interest was level or quality of care and the independent variable was caregiver QoL. We extracted data in tabular form and used a narrative synthesis approach to describe our findings. Only one relevant study was included in the review. Overall, the evidence was equivocal regarding the associations between caregiver QoL and the level/quality of care in AD.

关键词： Alzheimer’s Disease caregiver Quality of Life Level of Care Quality of Care

The Implications of the Timing of Diagnosis of Dementia on the Dementia caregiver

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Advances in Alzheimer's Disease 2016年第4期5卷 143-154页

作者： Kenneth K. W. Ng Melinda Martin-Khan Maree Farrow Elizabeth Beattie Nancy A. Pachana Centre for Research in Geriatric Medicine Faculty of Medicine School of Medicine The University of Queensland Brisbane Australia Queensland Health Sunshine Coast Hospital & Health Service Nambour Australia Centre for Online Health Faculty of Medicine School of Medicine The University of Queensland Brisbane Australia Wicking Dementia Research and Education Centre University of Tasmania Hobart Australia Faculty of Health School of Nursing Queensland University of Technology Brisbane Australia School of Psychology The University of Queensland Brisbane Australia

This is a consumer-reference feedback and feasibility testing of a protocol to obtain qualitative responses of co-residing caregivers to questions regarding the timing of dementia diagnosis and their experience of the disclosure of a diagnosis of dementia. Data collection involved focus group discussions and individual phone interviews of a convenience sample (N = 5) of an Alzheimer’s Australia state based Consumer Advisory Committee. Thematic analysis utilised the Leximancer software. Consumer feedback suggested a reordering of the interview questions and reversing the data collection sequence to reduce the emotional impact on participants. Suggestions were offered to limit the number of participants in the focus group to shorten the duration of the focus group session to prevent fatigue and to provide a support person to improve participant focus group comfort. Responses to the interview questions indicated caregivers retrospectively considered a timely diagnosis would have provided useful dementia-focused planning, reduced the difficulties of living with uncertainty and would have provided more time to obtain information and support. There were strong expectations for medical practitioners to be sensitive to the possibility of dementia and to be cognisant of the diagnostic concerns of caregivers. The diagnosis of dementia and its timing is important to the dementia caregiver in providing an explanation of the problems experienced and allowing earlier organisation of care, future planning and caregiver education to reduce the difficulties of living with undiagnosed and unrecognised dementia.

关键词： caregiver Timing Diagnosis Dementia Co-Residing

Taking Care of Her: A Pilot Feasibility Study of a caregiver Intervention for Women with Advanced Stage Ovarian Cancer

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Journal of Cancer Therapy 2017年第5期8卷 472-489页

作者： Frances Marcus Lewis Zainab Alzawad Kristin Griffith Hebah Almulla Pei-Chin Wu Nai-Ching Chi Ellen H. Zahlis Mary Ellen Shands Public Health Sciences Division & Clinical Research Division Fred Hutchinson Cancer Research Center Seattle USA Department of Family and Child Nursing University of Washington Seattle USA

The purpose of this study is to examine the feasibility and short-term impact of a fully manualized, telephone-delivered intervention for spouse caregivers, Taking Care of Her (TCH). A total of 12 study participants from the Pacific NW were enrolled whose wife was diagnosed with Stage III ovarian cancer within 8 months. Feasibility was confirmed by rates of recruitment and retention;the quality of delivery of the intervention by telephone;and through data obtained on program acceptability during follow up exit interviews. Outcomes from the within-group analysis revealed improvements on standardized measures of spouses’ and patients’ depressed mood and anxiety;marital communication about the cancer;caregivers’ skills and confidence to manage the emotional toll of the illness on themselves and wives;and wives’ positive appraisal of spousal support. Study results suggest that the TCH Program has the potential to positively affect both spouse caregiver and patients’ adjustment to recently diagnosed advanced ovarian cancer. Telephone delivery holds promise for sustainability. A future clinical trial with a larger study sample is warranted.

关键词： Advanced Ovarian Cancer Couple Adjustment Spouse caregiver Intervention

The Relationship with Previous Use of Community-Based Services and Informal caregiver Support and Elderly and Informal caregivers’ Views of Living Arrangement: Analysis of Official Statistics from 2004 to 2014

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Open Journal of Nursing 2019年第5期9卷 494-508页

作者： Kailu Wang Stephen Chi-Kin Law Eliza Lai-Yi Wong Eng-Kiong Yeoh The Jockey Club School of Public Health and Primary Care Faculty of Medicine The Chinese University of Hong Kong Hong Kong SAR China Centre for Applied Health Economics of the School of Medicine Menzies Health Institute Griffith University Queensland Australia

Background and Objectives: Views on living arrangement from elderly and informal caregivers are crucial to “ageing in place”. They might be related to the experience in the use of elderly care services, which remains inconclusive in previous literature. This study aimed to explore the association of previous experience in formal and informal long-term care services with views of both elderly and their informal caregivers on living arrangement. Research Design and Methods: This study adopted a cross-sectional design. Assessment records of Minimum Data Set-Home Care for community-dwelling elderly who were eligible for subsidized long-term care services in Hong Kong from 2004 to 2014 were made available. Multivariate logistic regression was applied to examine associations between both views on elder’s living arrangement from the elderly, caregivers and their previous informal caregiver support, and experience in formal care services. Results: 82,306 dyads of elderly and informal caregivers were included in the analysis. The elderly with previous use of home and community-based services (OR = 0.84, 95% CI 0.80 - 0.88) and informal caregivers (OR = 0.78, 95% CI 0.76 - 0.81) believed that the elderly should live away from home. Temporal trends of fewer elderly and caregivers supporting the idea of living away from home were also observed. Discussion and Implications: The results highlighted the importance of informal caregiver’s support and previous utilization of formal home and community-based services. It was concluded that resources and information of community-based care have a significant association with views on living at home also proper support services and training of care for the elderly should be made available to informal caregivers to reduce their burden.

关键词： Long-Term Care Elderly Informal caregiver Preference Living Arrangement Service Utilization

Depressive symptoms, social support, cognitive function, and stigma: predictors of resilience in caregivers of children with intellectual disabilities

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Frontiers of Nursing 2022年第4期9卷 361-369页

作者： Wattana Tejakum Thitipong Tankumpuan Wanich Suksatan Jirapan Saboonma Supapak Phetrasuwan Tamar Rodney Boromarajonani College of Nursing BangkokBangkok 10400Thailand Faculty of Nursing Mahidol UniversityBangkok NoiBangkok 10700Thailand Faculty of Nursing HRH Princess Chulabhorn College of Medical ScienceChulabhorn Royal AcademyBangkokBangkok 10210Thailand Department of Mental Health Ministry of Public HealthRajanukul InstituteNonthaburiNonthaburi 11000Thailand School of Nursing Johns Hopkins UniversityBaltimoreMaryland 21205-2110United States

Objective:Family plays an important role in taking care of children with intellectual disabilities(IDs).Resilience supports coping strategies for caregivers with their children caring.However,factors influencing the resilience of caregivers with ID in Thailand are yet to be identified.Therefore,the aim of this study was to identify the predictors of resilience in caregivers of children with moderate to severe ID.Methods:A cross-sectional study was implemented in caregivers of children with ID aged 18 years and older who had children diagnosed with ID aged 6–18 years and classified as moderate to severe ID.Descriptive statistic and multiple linear regression were used for data analysis.Results:The study sample consisted of 85 caregivers who took care of their children older than 5 years(95.30%).Depression,social support,cognitive function,and stigma could predict the resilience(F[4,80]=26.79,Pcaregivers have to take care of their children for a long period,which could develop a burden to the caregivers.The resilience and influencing factors should be monitored and managed by developing a campaign to promote caregivers’health and well-being.

关键词： caregiver cognitive function depressive symptoms intellectual disability social support stigma

The Relationship among caregiver Burden, Demographic Variables, and the Clinical Characteristics of Patients with Parkinson’s Disease—A Systematic Review of Studies Using Various caregiver Burden Instruments

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Open Journal of Nursing 2015年第10期5卷 855-877页

作者： Ingrid Leiknes Unn-Tone Lien Elisabeth Severinsson Centre for Movement Disorders Stavanger University Hospital Stavanger Norway Centre for Women’s Family & Child Health Faculty of Health Sciences Buskerud & Vestfold University College Kongsberg Norway Research Department Stavanger University Hospital and Centre for Women’s Family & Child Health Faculty of Health Sciences Buskerud & Vestfold University College Kongsberg Norway

Caring for a person with Parkinson’s disease (PD) extends far beyond the ordinary exchange of assistance among people in a close relationship. caregivers must learn to cope with the patient’s increasing disability and loss of independence. The aim of this systematic review was to critically assess and summarize the evidence of the influence of the demographic and clinical characteristics of patients with PD on caregiver burden by means of a caregiver burden instrument. In order to identify articles, electronic databases and reference lists were searched using the search word “Parkinson’s disease” in combination with “caregiver” or “carer” and with “burden” or “distress” or “stress” or “strain”. Thirty one articles were deemed eligible for inclusion. The methodological quality of the studies was evaluated. No studies were excluded due to low quality. The results revealed similar associations among caregiver burden, demographic variables and patient characteristics, across different caregiver burden instruments and various clinical scales. Higher PD stage and functional disability are the non-motor characteristics that contribute the most to caregiver burden. However, when comparing the impact of patient motor and non-motor symptoms, several studies found that mental symptoms had a stronger impact on caregiver burden than motor symptoms. No association was observed between caregiver burden and patient and caregiver demographics with the exception of the sub-scale analysis of caregiver burden in various age groups. Interpreting the results of studies that employ a range of different clinical assessment scales and burden instruments makes it challenging to provide a valid summary of caregiver burden in PD. The most commonly used analysis methods contribute little information about burden variation across caregiver groups or which areas are the most burdensome for caregivers. There is a need for a more uniform use of recommended instruments and for longitudinal studies.

关键词： caregiver Burden Distress Strain Stress Parkinson’s Disease

Three-year caregiver’s reports on driving performance: A divination or diagnostic tool for fitness to drive in Parkinson Disease patients

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Advances in Parkinson's Disease 2013年第2期2卷 47-52页

作者： Hoe C. Lee School of Occupational Therapy and Social Work Curtin Health Innovation Research Institute Curtin University Bentley Australia

Objectives: This study aims to examine whether information provided by spouse or relatives can be employed to identify PD patients with deteriorated driving performance, using three-year caregiver’s reports on their driving ability as the outcome measure. Methods: Fifty-three idiopathic PD subjects were assessed on open roads. Prior to the driving assessment, participants were examined by a geriatrician with various clinical assessments. The caregivers filled out a questionnaire, the scores of which is a reflection of their concern on driving performanceof their PD relatives. The same measurements were collected for the subsequent two years. Hierarchical Poisson regression analysis, adjusting for gender, age and driving exposure (hours of driving per week), was then undertaken to determine whether the measures of driving assessment were associated with the score of the questionnaire. Results: During the three-year period, all PD participants were rated at least 3 questions positive in the caregiver’s questionnaire;the worst participant was rated positive eight times. Except the assessment criteria to gauge thetraffic rulesandregulations compliance,all other measures of the driving assessment were found to be significantly associated with the information provided by the caregivers. Conclusions: This study demonstrated that the information provided by caregivers was useful to identify PD patients with deteriorated driving performance. If adopted as part of the off-road driving assessment for PD patients, the questionnaire can provide reliable information to clinicians.

关键词： Parkinson Disease Drivers caregiver Driving Assessment On-Road Screening Drivers

Quality of life for primary caregivers of muscular dystrophy patients in South Korea

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Chinese Medical Journal 2010年第4期123卷 452-457页

作者： Sang Hee Im Sang Chul Lee Jae Ho Moon Eun Sook Park Yoon Ghil Park Department of Rehabilitation Medicine Jeju National University School of Medicine Jeju & Yonsei University Graduate School Seoul Korea Department of Physical Medicine and Rehabilitation Myongji Hospital Kwandong University College of Medicine Goyang Korea Department of Rehabilitation Medicine and Rehabilitation Institute of Muscular Disease Yonsei University College of Medicine Seoul Korea Department and Research Institute of Rehabilitation Medicine Yonsei University College of Medicine Seoul Korea

Background Although some studies measured the burden of caregivers and the factors that influenced their feelings of burden, few studies have measured the quality of life （QOL） for primary caregivers of patients with muscular dystrophy （MD）. We assessed the QOL for primary caregivers of patients with MD in South Korea and identified factors associated with caregivers＇ QOL. Methods Ninety dyads of patients with MD and their primary caregivers were enrolled in this study. The QOL of caregivers of patients with MD was assessed subjectively using the World Health Organization Quality of Life Assessment, Life Brief Form. caregivers＇ emotional status was assessed using the Beck Depression Inventory （BDI） and family function level was evaluated using the Family APGAR scale. Patients reported their emotional status using the BDI or the Children＇s Depression Inventory. The functional levels of patients were evaluated by the modified Barthel Index. Results caregivers＇ QOL was statistically associated with family income, family function, emotional status of patients, level of education, and emotional status of caregivers （P 〈0.05）. caregivers who were employed had a significantly higher QOL than those who were not （P 〈0.05）. In multiple regression analyses, emotional and employment status of caregivers was strongly associated with caregivers＇ QOL. Conclusion Rehabilitation teams should consider not only the physical factors of patients but also the psychological and demographic factors of primary caregivers of patients with MD.

关键词： caregiver quality of life muscular dystrophy