Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinants of health

Verbakel, Ellen; Tamlagsrønning, Stian; Winstone, Lizzy; Fjær, Erlend Løvø; Eikemo, Terje Andreas

doi:10.1093/eurpub/ckw229

Cited by 180 publications

(219 citation statements)

References 15 publications

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“…These informal caregivers, who are called also home-care workers, give the same care that could be provided by a family member (Pucciarelli, Ausili, et al, 2018a;Simeone et al, 2016), but they are paid. Unpaid informal caregiving is the care given by a family member, a relative or a friend (Verbakel, Tamlagsronning, Winstone, Fjaer, & Eikemo, 2017).…”

Section: Introductionmentioning

confidence: 99%

Formal and informal care after stroke: A longitudinal analysis of survivors’ post rehabilitation hospital discharge

Pucciarelli

Ausili

Rebora

et al. 2019

Journal of Advanced Nursing

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Aims To describe the type and the amount of formal and informal care received during the first year after home discharge and to identify the baseline predictors of the formal and informal care needs of stroke survivors. Design Longitudinal study. Data were collected between June 2013–May 2016. Methods Survivors (N = 415) were enrolled during discharge from rehabilitation hospitals and interviewed at 3 (T1), 6 (T2), 9 (T3), and 12 (T4) months. The linear mixed effects model with random intercept and random slopes was used to trend for the amount of formal and informal care received by survivors during the four observation times. Results Regarding formal care, only physiotherapy and speech therapy decreased significantly over time. Stroke survivors received a mean of 17 hr of paid informal care per week at T1 and these hours did not significantly decrease after one year from discharge, while unpaid informal care decreased significantly over time. Higher numbers of paid informal caregiving were predicted by older age, higher education levels, lower physical functioning, and living without unpaid informal caregivers while higher numbers of unpaid informal care were predicted by lower physical functioning and living with unpaid informal caregivers. Conclusions Stroke has a great effect on survivors’ lives. During the first few months after rehabilitation hospital discharge, survivors need further care because they are often discharged before achieving independent functioning. Impact The results of this study could be important to guide future interventions aimed at imporving stroke survivors' conditions after post rehabilitation hospital discharge.

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Section: Introductionmentioning

confidence: 99%

Formal and informal care after stroke: A longitudinal analysis of survivors’ post rehabilitation hospital discharge

Pucciarelli

Ausili

Rebora

et al. 2019

Journal of Advanced Nursing

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“…One third of the European population spends time giving informal care, in other words, looking after or giving help to family members, friends, neighbours or other acquaintances because of health reasons (Verbakel, Tamlagsrønning, Winstone, Erlend, & Eikemo, ). In this article, we label people giving informal care as “caregivers”; those who give care within their profession are referred to as “professionals.” In complex care and long‐term care situations informal care is often combined with help from professionals (Jacobs, Broese van Groenou, de Boer, & Deeg, ).…”

Section: Introductionmentioning

confidence: 99%

Informal caregivers’ views on the division of responsibilities between themselves and professionals: A scoping review

Wittenberg

Kwekkeboom

Staaks

et al. 2017

Health Soc Care Community

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This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers' views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

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“…Turning to population-based studies examining wellbeing and quality of life, the picture is mixed, including negative impacts of caregiving (Broek and Grundy 2018;Chen et al 2019;Hirst 2005;van den Berg et al 2014;Verbakel et al 2017Verbakel et al , 2018, no significant effects (McMunn et al 2009;Wahrendorf and Siegrist 2010), negative effects only for specific subgroups (Hansen et al 2013;Lacey et al 2019;Zaninotto et al 2013), or even positive effects (Hansen et al 2013;McMunn et al 2009). One reason for such heterogeneity might be differences in study design, in particular the degree to which selection into caregiving has been controlled for.…”

Section: Potential Impact Of Caregiving Upon Quality Of Lifementioning

confidence: 99%

Informal caregiving and quality of life among older adults: Prospective analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)

Sacco

König

Westerlund

et al. 2020

Preprint

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Providing unpaid informal care to someone who is ill or disabled is a common experience in later life. While a supportive and potentially rewarding role, informal care can become a time and emotionally demanding activity, which may hinder older adults’ quality of life. In a context of rising demand for informal carers, we investigated how caregiving states and transitions are linked to overall levels and changes in quality of life, and how the relationship varies according to care intensity and burden. We used fixed effects and change analyses to examine six-wave panel data (2008–2018) from the Swedish Longitudinal Occupational Survey of Health (SLOSH, n=5076; ages 50–74). The CASP-19 scale is used to assess both positive and negative aspects of older adults’ quality of life. Caregiving was related with lower levels of quality of life in a graded manner, with those providing more weekly hours and reporting greater burden experiencing larger declines. Two-year transitions corresponding to starting, ceasing and continuing care provision were associated with lower levels of quality of life, compared to continuously not caregiving. Starting and ceasing caregiving were associated with negative and positive changes in quality of life score, respectively, suggesting that cessation of care leads to improvements despite persistent lower overall levels of quality of life. Measures to reduce care burden or time spent providing informal care are likely to improve the quality of life of older people.

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Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinants of health

Cited by 180 publications

References 15 publications

Formal and informal care after stroke: A longitudinal analysis of survivors’ post rehabilitation hospital discharge

Formal and informal care after stroke: A longitudinal analysis of survivors’ post rehabilitation hospital discharge

Informal caregivers’ views on the division of responsibilities between themselves and professionals: A scoping review

Informal caregiving and quality of life among older adults: Prospective analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)

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