Family Carers' Experiences Using Support Services in Europe: Empirical Evidence From the EUROFAMCARE Study

Lamura, Giovanni; Mnich, Eva; Nolan, Mike; Wojszel, Zyta Beata; Krevers, Barbro; Mestheneos, Liz; Döhner, Hanneli

doi:10.1093/geront/48.6.752

Cited by 128 publications

(129 citation statements)

References 15 publications

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“…On the other hand, socio-demographic trends such as delayed childbearing, smaller families, more divorce and remarriage, more female employment and dual-earner households, higher migration and globalization, and less inter-generational co-residency are reducing the supply of family caregivers. 4,5 Changing healthcare policies (e.g., limiting hospital beds for chronic physical conditions, psychiatric deinstitutionalization) and escalating healthcare costs compound the demand for informal caregiving. 6,7 While this shift toward community care has enormous positive value from a societal perspective by sparing professional and economic resources, it presumably has negative consequences for the caregivers, including opportunity costs or foregone income, reduced quality of life, and increased stress-related conditions.…”

Section: Introductionmentioning

confidence: 99%

Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys

Viana

Gruber

Shahly

et al. 2013

Rev. Bras. Psiquiatr.

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Objective: To assess prevalence and correlates of family caregiver burdens associated with mental and physical conditions worldwide. Methods: Cross-sectional community surveys asked 43,732 adults residing in 19 countries of the WHO World Mental Health (WMH) Surveys about chronic physical and mental health conditions of first-degree relatives and associated objective (time, financial) and subjective (distress, embarrassment) burdens. Magnitudes and associations of burden are examined by kinship status and family health problem; population-level estimates are provided. Results: Among the 18.9-40.3% of respondents in high, upper-middle, and low/lower-middle income countries with first-degree relatives having serious health problems, 39.0-39.6% reported burden. Among those, 22.9-31.1% devoted time, 10.6-18.8% had financial burden, 23.3-27.1% reported psychological distress, and 6.0-17.2% embarrassment. Mean caregiving hours/week was 12.9-16.5 (83.7-147.9 hours/week/100 people aged 18+). Mean financial burden was 15.1% of median family income in high, 32.2% in upper-middle, and 44.1% in low/lower-middle income countries. A higher burden was reported by women than men, and for care of parents, spouses, and children than siblings. Conclusions: The uncompensated labor of family caregivers is associated with substantial objective and subjective burden worldwide. Given the growing public health importance of the family caregiving system, it is vital to develop effective interventions that support family caregivers.

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Section: Introductionmentioning

confidence: 99%

Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys

Viana

Gruber

Shahly

et al. 2013

Rev. Bras. Psiquiatr.

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“…Although interventions and support services for older family carers exist, there is still a need for more effective ways of supporting them (Schulz 2001;Lamura et al 2008). Moreover, the means by which such support is offered does not always match the carers' needs.…”

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confidence: 99%

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT)

2013

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The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.

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“…Support and help were broadly defined as personal care, emotional and psychological support, regular visits and phone calls, financial help and organization of care provided by formal caregivers. 24 The initial contact with the research assistants disclosed that several care recipients did not have a dementia diagnosis due to insufficient diagnostic procedures. In these cases, the condition was described as cognitive impairment or memory loss.…”

Section: Sample and Settingmentioning

confidence: 99%

Psychometric validation of the Carers of Older People in Europe Index among family caregivers of older persons with dementia

et al. 2018

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Objectives: The Carers of Older People in Europe Index is a first-stage assessment tool to detect family caregivers in need of support. This instrument assesses caregivers’ subjective perceptions of their caregiving circumstances. The present study examines the psychometric properties of the Norwegian version of the Carers of Older People in Europe Index among family caregivers for older persons with dementia living at home. Methods: Cross-sectional survey data were collected from 430 dementia caregivers. The sample was randomly split as follows: the first half of the sample was used to identify the measurement model using an exploratory factor analysis, and the second half of the sample was used to cross-validate the model using a confirmatory factor analysis. The criterion validity and reliability (internal consistency and test–retest reliability) of the Carers of Older People in Europe Index were also examined. Results: Using an exploratory factor analysis, we extracted three factors that were consistent with previous findings: negative impact of caregiving, positive values of caregiving and quality of support. This model fit the data well using a confirmatory factor analysis. Moreover, a second-order model could replace the three-factor correlated model without sacrificing the model fit, supporting the use of a global impact of caregiving score. The three factors and the global factor correlated with the criteria measures in the expected directions. The internal consistency was assessed using Cronbach’s alpha and was good for the negative impact ( α = 0.86) and the quality of support ( α = 0.76) factors. The positive values factor was less consistent ( α = 0.64). The test–retest reliability was examined using Spearman’s rank order correlation and was good for all three factors. Conclusion: The psychometric properties of the Norwegian version of the Carers of Older People in Europe Index are good. The instrument assesses dementia caregivers’ situations across three primary factors or alternatively validly summarizes the factors in a global impact of caregiving score.

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Family Carers' Experiences Using Support Services in Europe: Empirical Evidence From the EUROFAMCARE Study

Cited by 128 publications

References 15 publications

Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys

Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT)

Psychometric validation of the Carers of Older People in Europe Index among family caregivers of older persons with dementia

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