Informal care providers for veterans with SCI: Who are they and how are they doing?

Abstract Abstract Background. A growing number of patients with chronic cardiovascular disease (CVD) creates a growing demand for homecare. Personal and professional limitations, health issues, and lack of systemic support of informal care providers are major causes of insufficient care models for chronically ill patients in home environments. This study aimed to identify the sociodemographic variables that are associated with the needs and increasing occupational burnout observed among home care providers. Methods. This study reports on 161 informal home care providers of patients with CVDs. The research was conducted in the homes of patients, using the Camberwell Assessment of Need Short Appraisal Schedule (CANSAS), the Maslach Burnout Inventory (MBI), and a structured interview questionnaire developed by the authors. Spearman’s rank correlation coefficient test and logistic regression were used for analyses. Results. The majority of the participants were female (70.2%; n=113). We found that younger care providers were less likely to report unmet needs ( p = 0.011), and less likely to report burnout as measured by the MBI Emotional Exhaustion ( p = 0.010) and Depersonalization ( p = 0.009) subscales. Care providers with primary education were more likely to report burnout on the MBI Depersonalization subscale ( p = 0.028). In addition, care providers who worked more often reported higher levels of met needs ( p = 0.022), and burnout as measured on the MBI Depersonalization ( p = 0.005) and Emotional Exhaustion ( p = 0.018) subscales. Subjects residing in urban areas were more likely to report unmet needs ( p = 0.007), and were also more likely to report burnout as measured on the MBI Emotional Exhaustion ( p = 0.006) subscale. Conclusion. Older care providers who are unemployed and reside in cities and unemployed should be targeted with directed programmes to determine the category of unmet needs, and for personalized support. Care providers with these demographic characteristics should be targeted for occupational burnout prevention programmes. Keywords: informal caretaker, met and unmet needs, growing burnout.

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A Validity Study of Malay-translated Version of the Modified Caregivers Strain Index Questionnaire (M-CSI-M)

Journal of Business and Social Review in Emerging Economies ◽

10.26710/jbsee.v3i2.47 ◽

2017 ◽

Vol 3 (2) ◽

pp. 217-226 ◽

Cited By ~ 1

Author(s):

Mohan S.Ramasamy ◽

Rahimah Ibrahim ◽

Zainal Madon ◽

Zarinah Arshat

Keyword(s):

Informal Care ◽

Health Care Professionals ◽

National Language ◽

Face Validity ◽

Caregiver Strain ◽

Care Providers ◽

Validity And Reliability ◽

Strain Index ◽

Translation Strategy ◽

Dependent Elderly

The diversity of the population of the world suggests a great need for validated cross-cultural survey instruments or scales. Health care professionals should have access to reliable sources and valid concepts of interest in their own cultures and languages to provide quality patient care. Therefore, the aims of this study were to translate the Modified Caregiver Strain Index (M-CSI) in the national language of Malaysia. Also to evaluate the validity and reliability of the Malay-translated version of Modified Caregiver Strain Index (M-CSI-M). Instrument was translated forward and rearward through the translation strategy, reconciled by a panel, and verified by the Malaysian Institute of Translation & books as experts of content. After methodological approaches for the translation, adaptation and transcultural validation of Modified Caregiver Strain Index (M-CSI). The latest version of Malaysia was administered to 50 informal care providers of dependent elderly with the Parkinson's disease, at the Association of Parkinson Malaysia (MPDA) and University Kebangsaan Malaysia (UKM) Medical Centre in May 2017. The Malaysians Modified Caregiver Strain Index (M-CSIM) has good face validity and content, as well as inner consistency (Cronbach's alpha 0.75). In conclusion, the M-CSI-M is a reliable tool for the evaluation of caregiving strain levels experienced by informal care providers in Malaysia. M-CSI-M is recommended as a brief and valid measurement that can be used by doctors, counselors, social workers and psychologists to locate the caregiving strain levels of the informal care providers of dependent elderly in Malaysia

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Heightened vulnerabilities and better care for all: Disability and end-of-life care

Palliative & Supportive Care ◽

10.1017/s147895151100054x ◽

2012 ◽

Vol 10 (1) ◽

pp. 17-26 ◽

Cited By ~ 2

Author(s):

Deborah Stienstra ◽

April D'Aubin ◽

Jim Derksen

Keyword(s):

End Of Life ◽

Informal Care ◽

End Of Life Care ◽

Healthcare Providers ◽

People With Disabilities ◽

Life Care ◽

Care Providers ◽

Policy Makers ◽

Policy Documents ◽

Canadian Provinces

AbstractObjective:The purpose of this study was to assess the extent to which vulnerability was present or heightened as a result of either disability or end-of-life policies, or both, when people with disabilities face end of life.Method:People with disabilities and policy makers from four Canadian provinces and at the federal level were interviewed or participated in focus groups to identify interactions between disability policies and end-of-life policies. Relevant policy documents in each jurisdiction were also analyzed. Key theme analysis was used on transcripts and policy documents. Fact sheets identifying five key issues were developed and shared in the four provinces with policy makers and people with disabilities.Results:Examples of heightened vulnerability are evident in discontinuity from formal healthcare providers with knowledge of conditions and impairments, separation from informal care providers and support systems, and lack of coordination with and gaps in disability-related supports. When policies seek to increase the dignity, autonomy, and capacity of all individuals, including those who experience heightened vulnerability, they can mitigate or lessen some of the vulnerability.Significance of results:Specific policies addressing access to community-based palliative care, coordination between long-standing formal care providers and new care providers, and support and respect for informal care providers, can redress these heightened vulnerabilities. The interactions between disability and end-of-life policies can be used to create inclusive end-of-life policies, resulting in better end-of-life care for all people, including people with disabilities.

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Characteristics and contributions of non-kin carers of older people: a closer look at friends and neighbours

Ageing and Society ◽

10.1017/s0144686x12000736 ◽

2012 ◽

Vol 33 (8) ◽

pp. 1442-1468 ◽

Cited By ~ 19

Author(s):

TRACEY A. LAPIERRE ◽

NORAH KEATING

Keyword(s):

Informal Care ◽

General Social Survey ◽

Future Research ◽

Care Providers ◽

Social Survey ◽

Relationship Closeness ◽

Care Giving ◽

Using Data ◽

A Minor

ABSTRACTResearch on informal care-giving has largely neglected the contributions of non-kin carers. This paper investigated the characteristics and contributions of non-kin who care for older adults with a long-term health problem, and investigated friends and neighbours as distinct categories of care providers. Using data from 324 non-kin carers in the 1996 General Social Survey of Canada, this study compared individual and relationship characteristics, care tasks and amount of care provided for the two groups. Interpersonal and socio-demographic characteristics were investigated as mediators of potential differences between friends and neighbours in patterns of care. Results demonstrate that friend and neighbour carers differed on age, marital status, geographical proximity and relationship closeness. Friends were more likely than neighbours to assist with personal care, bills and banking, and transportation. Neighbours were more likely to assist with home maintenance. Friends provided assistance with a greater number of tasks and provided more hours of care per week, suggesting a more prominent role in the care of non-kin than neighbours. Age, income, a minor child in the household, proximity and relationship closeness significantly predicted amount of care provided, and relationship closeness largely explained differences between friends and neighbours. Future research on informal care-giving can build on the findings that distinguish friend and neighbour carers to further discriminate the dynamics of non-kin care.

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Cost analysis of informal care: estimates from a national cross-sectional survey in Sweden

BMC Health Services Research ◽

10.1186/s12913-021-07264-9 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Björn Ekman ◽

Kevin McKee ◽

Joana Vicente ◽

Lennart Magnusson ◽

Elizabeth Hanson

Keyword(s):

Informal Care ◽

Adult Population ◽

Informal Caregivers ◽

Indirect Costs ◽

Direct Costs ◽

Care Providers ◽

Cross Sectional Survey ◽

Income Loss ◽

Cross Sectional ◽

Direct And Indirect Costs

Abstract Background Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce. Objective This study contributes to the existing evidence on the costs of informal care by estimating the direct and indirect costs to caregivers using a purposive national household survey from Sweden. Methods Adopting a bottom-up, prevalence approach, the direct and indirect costs are estimated using the survey data and the value of working time and leisure time from existing sources. Results The results suggest that around 15% of the adult population of Sweden provide informal care and that such care costs around SEK 152 billion per year (around 3% of GDP; USD 16,3 billion; EUR 14,5 billion), or SEK 128000 per caregiver. Around 55% of costs are in the form of income loss to caregivers. The largest cost items are reduced work hours and direct costs of providing informal care. Replacing informal caregivers with professional care providers would be costly at around SEK 193,6 billion per year. Conclusions Findings indicate that, even in a country with a relatively generous welfare system, significant resources are allocated toward providing informal care. The costing analysis suggests that effective support initiatives to ease the burden of informal caregivers may be cost-effective.

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Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study

Interactive Journal of Medical Research ◽

10.2196/12381 ◽

2019 ◽

Vol 8 (4) ◽

pp. e12381 ◽

Cited By ~ 2

Author(s):

Oliver Daniel Mowforth ◽

Benjamin Marshall Davies ◽

Mark Reinhard Kotter

Keyword(s):

Quality Of Life ◽

Disease Severity ◽

Informal Care ◽

Cervical Myelopathy ◽

Informal Caregivers ◽

Simple Relationship ◽

Care Providers ◽

Demographic Groups ◽

Degenerative Cervical Myelopathy

Background Degenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized. Objective This study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors. Methods Carers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers. Results DCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups. Conclusions Caring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.

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The Effects of Home Care Provider Mix on the Care Recipient: An International, Systematic Review of Articles from 2000 to 2020

Annual Review of Public Health ◽

10.1146/annurev-publhealth-090419-102354 ◽

2021 ◽

Vol 42 (1) ◽

Author(s):

Norma B. Coe ◽

R. Tamara Konetzka ◽

Melissa Berkowitz ◽

Emily Blecker ◽

Courtney H. Van Houtven

Keyword(s):

Systematic Review ◽

Health Care ◽

Informal Care ◽

Well Being ◽

Health Care Use ◽

Care Recipient ◽

Publication Date ◽

Formal Care ◽

Care Providers ◽

Care Recipients

In this systematic review, we examine the literature from 2000 to 2020 to ascertain whether we can make strong conclusions about the relative benefit of adding informal care or formal care providers to the care mix among individuals receiving care in the home, specifically focusing on care recipient outcomes. We evaluate how informal care and formal care affect (or are associated with) health care use of care recipients, health care costs of care recipients, and health outcomes of care recipients. The literature to date suggests that informal care, either alone or in concert with formal care, delivers improvements in the health and well-being of older adults receiving care. The conclusions one can draw about the effects of formal care are less clear. Expected final online publication date for the Annual Review of Public Health, Volume 42 is April 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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