The European journal of health economics, Jan 31, 2024
Faced with an unprecedented demand for long-term care, European health care systems are moving to... more Faced with an unprecedented demand for long-term care, European health care systems are moving towards mixed care models, where the welfare state and informal caregivers share care responsibilities. While informal care is often viewed as a means of alleviating pressure on public care, it comes with significant economic costs for caregivers, their employers, and society at large. This study uses nationally representative data to estimate the total direct (informal care time and out-of-pocket costs) and indirect (productivity) economic costs of informal care in the Netherlands in 2019. Informal care time costs are estimated using the opportunity cost and the proxy good methods. Indirect costs are estimated using the human capital and friction cost approaches. Our results reveal the considerable annual societal cost of informal care in the Netherlands, ranging between €17.5 billion and €30.1 billion, depending on the valuation approach. These costs are equivalent to 2.15% and 3.71% of Dutch GDP in 2019, comparable to the public expenditure on long-term care in that year. Female caregivers account for slightly more than half (53%-57%) of the total costs. Around 57%-88% of these costs are in the form of informal care time. The main driver of indirect costs is the temporary cessation of work, which comprises 12%-17% of the total costs. Findings corroborate that substantial resources, yet thus far largely disregarded, are spent on informal care even in a country with a relatively generous public long-term care system.
Little is known about the effects of informal care-giving on employees' absenteeism due to illnes... more Little is known about the effects of informal care-giving on employees' absenteeism due to illness. This paper therefore provides a longitudinal analysis of the consequences of taking on informal care-giving for men's and women's working hours and workplace absenteeism due to illness. Data were taken from the Dutch Labour Supply Panel (waves 2004-2018); 495 of the 6,452 male observations in this panel and 696 of the 5,961 female observations had taken on informal care-giving. It was tested whether respondents who became (intensive) informal carers were more likely than respondents who remained non-care-givers to reduce their work hours or stop working between waves t and t1, or to be absent from work due to illness in wave t1. (Multinomial) logistic regression analyses showed that taking on informal care reduced women's working hours when the care they provided was intensive, but not men's. The predicted probability of women reducing their work hours was 12 per cent if they had remained non-care-givers between waves t and t1, 15 per cent if they had started giving non-intensive care and 19 per cent if they had begun providing intensive help. In addition, starting to provide (non-intensive) informal care increased the riskof workplace absenteeism among both women and men. The study highlights the need for workplace policies that prevent female carers from reducing their work hours, and enable male and female carers to continue working in a healthy way.
Tijdschrift Voor Gerontologie En Geriatrie, Dec 1, 2011
Caring friends and neighbors as informal caregivers of older adults: A comparison with offspring ... more Caring friends and neighbors as informal caregivers of older adults: A comparison with offspring This study compared informal care to older, non-coresiding adults provided by friends and neighbours and informal care by children or their partners. Using data from a Dutch representative survey among informal caregivers conducted by CBS and SCP, caregivers of friends (n=133), neighbours (n=108) and parents (n=1,008) were compared with one another to investigate care that friends and neighbours provide to the elderly non-coresiding adults (age 55 and over). Nine percent of those providing care to someone outside the household were friends and nine percent were neighbours. Friends, like children, usually provide long-lasting care, up to four or five years. Friends are similar to neighbours in the number of hours that they provide care. Friends and neighbours experience a lower caregiver burden than children. However, when fulfilling multiple caring tasks, both friends and children, have a greater chance of experiencing higher levels of burden. When there were other caregivers to help, friends experienced a small reduction in burden. Friends and neighbours deserve to be recognized as informal caregivers by policy makers and they deserve attention and support along with family caregivers.
Abstract Inspired by both classical theories on technology adoption and gerontological theories o... more Abstract Inspired by both classical theories on technology adoption and gerontological theories on social and emotional ageing, we aim to better understand barriers and benefits in ICT use among older people with cognitive impairments. Through qualitative interviews (N = 35) among this population as well as important network members, we obtained a detailed picture of the role of ICTs in their everyday lives. First, we find that older individuals with cognitive impairments perceive ICTs as useful when these contribute to the satisfaction of social and emotional needs in terms of relationships, hobbies or daily activities. Second, ICT use among our group is jointly determined by perceived usefulness (PU), and perceived ease of use (PEU), with PU motivating individuals to increase PEU. Third, the social network plays an important role in encouraging and discouraging ICT use: by providing assistance, taking the first step, restricting access or indirect use. The latter refers to shared use, where devices are operated by others. Fourth, we point out the importance of voluntariness in using ICT: some participants were so restricted by others in their ICT use that this reduced their perception of control. We conclude by providing recommendations for family members, caregivers, and ICT developers.
Original title: Blijvend in balans; een toekomstverkenning van informele zorg. What will informal... more Original title: Blijvend in balans; een toekomstverkenning van informele zorg. What will informal care look like in 2020? What can the government do about problems which may arise with regard to informal care? It is often assumed that there will be less informal care in the future. However, forecasts suggest that the number of people giving and receiving care will remain in balance. Nonetheless, there are a number of key social and cultural trends which will put pressure on the provision of informal care. The rising labour participation rate of women and older people, the growing geographical distances between relatives and the overall higher education level all have a negative influence on the availability of care. In addition, many people in need of care actually prefer professional care because they find it difficult to receive help from their close relatives. There are also positive trends, however, such as the rise in the number of potential caregivers among older persons. The balance of supply and take-up depends not only on the choices people themselves make; government policy also has a clear influence. For example, people are increasingly combining paid work with care tasks; this means the importance of leave arrangements is becoming ever greater. In this publication SCP, at the request of the Dutch Ministry of Health, Welfare and Sport (VWS), brings together a number of background studies on the future of informal care.
Informal care, meaning taking health-related care of people in their own social network, is a top... more Informal care, meaning taking health-related care of people in their own social network, is a topic that gets more and more attention in social science research because the pressure on people to provide informal care is rising due to ageing societies and policy changes. The Informal Care Model developed by Broese van Groenou and de Boer (Eur J Ageing 13(3):271-279, 2016) provides a theoretical foundation to understand under what conditions a person provides informal care. We test this theoretical model by applying it to intrapersonal changes in informal care provision during the first COVID-19 lockdown in the Netherlands in Spring 2020. Data from the LISS panel from two time points, March 2020 and data from July over the period of April/May 2020, were analysed with multinominal multilevel regression analysis (N = 1270 care situations of 1014 caregivers). Our results showed that the individual determinants (Do I have to?, Do I want to?, and especially Can I?) discussed in the Informal Care Model (apart from a series of control variables) are contributing substantially to the understanding of intrapersonal changes in care provision during the first lockdown and by that, we found empirical support for the theoretical model. We conclude that on top of its original purpose to explain between-individual differences in informal caregiving using static indicators, the Informal Care Model is also useful to explain intrapersonal changes in informal caregiving using dynamic indicators.
Net als in eerdere rapportages van toekomstverkenning van mantelzorg blijkt ook uit dit onderzoek... more Net als in eerdere rapportages van toekomstverkenning van mantelzorg blijkt ook uit dit onderzoek dat in de toekomst (tot 2030) geen onrustbarende kloof tussen aantallen ontvangers en verleners van mantelzorg wordt verwacht. In eerdere adviezen van het SCP over de mantelzorg is aandacht gevraagd voor de vaak problematische combinatie van werken en helpen. Er is in dat verband gewezen op de spanning tussen twee doelen van beleid: 'meer mensen langer aan het werk' en 'grotere eigen verantwoordelijkheid van burgers voor hun hulpbehoevende netwerkleden'. In deze studie is die spanning in cijfers gevat. De cijfers tonen dat de stijgende arbeidsdeelname - die het kabinet nodig acht omdat de Nederlandse beroepsbevolking krimpt - een prijs heeft in de vorm van verlies van informele steun. Dit verlies kan leiden tot een groter beroep op professionele hulp, tenzij verlofregelingen worden verbeterd.
Original title: Portretten van Mantelzorgers. There are more than a million people in the Netherl... more Original title: Portretten van Mantelzorgers. There are more than a million people in the Netherlands providing informal care, making this the most widely given form of care. Who are these informal carers and why are they willing to spend sometimes years selflessly helping others? This publication gives a voice to informal carers themselves. During four group discussions, in which nearly 40 male and female informal carers took part, they talked at length about their daily lives and about what it is like to care for a loved one. They also described the problems they encountered and their contacts with the authorities. One striking finding to emerge was that many informal carers have comparable working styles. Six of these styles are considered in this report: the born informal carer, the dynamic informal carer, the angry informal carer, the resigned informal carer, the indispensable informal carer and the overstressed informal carer. 16 informal carers with a specific working style recount their stories in the report. The differences between male and female carers also receive wide attention. The final chapter looks at what policymakers and professionals can learn from this diversity in the informal care circuit. What are the traps in the life of the born informal carer? Who manages to cope successfully with the personal budget system? How should the angry informal carer be approached? What is the best way to help the indispensable carer? This is the third publication produced as part of the 'Informal Care' research programme.
Dit artikel geeft inzicht in de mate waarin betaald werk en mantelzorg elkaar bij vrouwen en mann... more Dit artikel geeft inzicht in de mate waarin betaald werk en mantelzorg elkaar bij vrouwen en mannen in de weg zitten. De gegevens komen uit een tweejaarlijks onderzoek onder zo'n 4.800 werkenden en niet-werkenden van het Sociaal en Cultureel Planbureau (Arbeidsaanbodpanel, 2004-2014). In 2014 hielp 23% van de werkende vrouwen en 15% van de werkende mannen in de leeftijd 23-65 jaar een naaste bij de persoonlijke verzorging of het huishouden. Het grotere percentage mantelzorgers onder vrouwen komt vooral doordat dochters vaker dan zonen voor een ouder zorgen. Voor een schoonouder zorgen vrouwen en mannen vrijwel even vaak. Als vrouwen en mannen eenmaal met mantelzorg beginnen, verschillen de gevolgen nauwelijks van elkaar. Ze korten hun arbeidsduur niet in verhoogde mate in en stoppen niet vaker met werk, maar het langdurig verzuim stijgt, vooral bij langer aanhoudende zorg. Wel krijgen mannen meer gezondheidsklachten en vrouwen niet.
In Nederland verlenen meer dan een miljoen mensen mantelzorg, die daarmee de meest gegeven vorm v... more In Nederland verlenen meer dan een miljoen mensen mantelzorg, die daarmee de meest gegeven vorm van zorg is. Wie is mantelzorger en waarom is zij (of hij) bereid soms jarenlang op onbaatzuchtige wijze hulp te verlenen? In deze publicatie komen de mantelzorgers zelf aan het woord. Tijdens vier bijeenkomsten, waaraan bijna veertig mannelijke en vrouwelijke mantelzorgers deelnamen, vertelden zij uitvoerig over hun dagelijks leven en hoe het is om voor een naaste te zorgen. Ook stonden ze stil bij de problemen die ze tegenkwamen en hoe de contacten met de instanties verliepen. Het was opvallend dat veel mantelzorgers een vergelijkbare werkstijl bleken te hebben. Zes werkstijlen passeren de revue: de geboren mantelzorger, de aanpakker, de boze mantelzorger, de beruster, de onmisbare en tot slot de overspannen mantelzorger. Zestien mantelzorgers met een specifieke werkstijl vertellen hier hun verhaal. Ook de verschillen tussen mannelijke en vrouwelijke mantelzorgers komen uitgebreid aan bod. Het slothoofdstuk gaat in op wat beleidsmakers en professionals kunnen leren van deze verscheidenheid in de mantelzorg. Bijvoorbeeld: wat is de valkuil in het leven van de geboren mantelzorger? Wie kan er goed met een pgb overweg? Hoe moet je een mantelzorger tegemoet treden bij wie boosheid overheerst? Hoe help je de onmisbare helper het beste? Deze publicatie is de derde in het kader van het onderzoeksprogramma 'Informele zorg', en een vervolg op Blijvend in balans en Toekomstverkenning informele zorg.
ObjectivesTo facilitate care at the end of life at home, support from family caregivers is crucia... more ObjectivesTo facilitate care at the end of life at home, support from family caregivers is crucial. A substantial number of these family caregivers also work. Work in relation to care for terminally ill patients has received limited attention. To better understand the context in which these family caregivers provide care, we provide a detailed overview of the situation and experiences of family caregivers of terminally ill patients at home, with and without paid work.MethodsWe used a pooled cross-section of data from the Dutch Informal Care Study, collected in 2014 and 2016. All working and non-working family caregivers of terminally ill patients at home were included (n=292).ResultsWorking family caregivers reported more care tasks, and shared care tasks with others more often than non-working caregivers. No differences between working and non-working caregivers were found in negative and positive experiences. Non-working caregivers provided care more often because the care recipient wanted to be helped by them or because there was no one else available than working caregivers. About 70% of the working caregivers were able to combine work and family caregiving successfully.ConclusionsWorking and non-working family caregivers of terminally ill patients at home have similar burden and positive experiences. Working family caregivers vary in their ability to combine work and care. Although the majority of working family caregivers successfully combine work and care, a substantial number struggle and need more support with care tasks at home or responsibilities at work.
Deze publicatie schetst een systematisch en cijfermatig beeld van het toekomstig aanbod en gebrui... more Deze publicatie schetst een systematisch en cijfermatig beeld van het toekomstig aanbod en gebruik van informele zorg. Positieve trend is de stijging van het aantal relaties met zorgpotentieel bij ouderen. Ook bij andere groepen, zoals mensen met een verstandelijke beperking, is sprake van wat ruimte voor informele zorg. Er zijn ook ontwikkelingen die de informele zorgverlening temperen, zoals de toenemende arbeidsparticipatie van vrouwen en ouderen, de grotere geografische afstanden tussen familieleden en een geringere geneigdheid om informele zorg te geven, aspecten die sterk samenhangen met het stijgende opleidingsniveau van de bevolking. Daarnaast hebben lang niet alle mensen met beperkingen een voorkeur voor informele zorg; een deel voelt zich bezwaard hulp van naasten te ontvangen. Of het geven en het ontvangen van informele zorg in balans blijven, hangt niet alleen af van de kenmerken potentiele helpers en ontvangers, maar ook van de keuzen die de overheid maakt. Zo leidt een sterkere nadruk op de eigen verantwoordelijkheid voor het sociale netwerk bijvoorbeeld tot een grotere behoefte aan vrijstelling van betaalde arbeid. Dit onderzoek is uitgevoerd op verzoek van het ministerie van Volksgezondheid, Welzijn en Sport.
Little is known about the effects of informal care-giving on employees' absenteeism due to il... more Little is known about the effects of informal care-giving on employees' absenteeism due to illness. This paper therefore provides a longitudinal analysis of the consequences of taking on informal care-giving for men's and women's working hours and workplace absenteeism due to illness. Data were taken from the Dutch Labour Supply Panel (waves 2004–2018); 495 of the 6,452 male observations in this panel and 696 of the 5,961 female observations had taken on informal care-giving. It was tested whether respondents who became (intensive) informal carers were more likely than respondents who remained non-care-givers to reduce their work hours or stop working between waves t and t1, or to be absent from work due to illness in wave t1. (Multinomial) logistic regression analyses showed that taking on informal care reduced women's working hours when the care they provided was intensive, but not men's. The predicted probability of women reducing their work hours was 12 per c...
In de verpleeghuiszorg zagen we in de afgelopen decennia een ontwikkeling van een overwegend pate... more In de verpleeghuiszorg zagen we in de afgelopen decennia een ontwikkeling van een overwegend paternalistische aanpak naar een meer democratische manier van zorg verlenen. In veel zorgorganisaties zijn bewoners echter nog nauwelijks betrokken in de dagelijkse routine. In een participatief onderzoek op een somatische zorgafdeling in een grote stad in Nederland, onderzochten we de betrokkenheid van bewoners in het verpleeghuis. We organiseerden twee homogene groepssessies (medewerkers en bewoners afzonderlijk), experimenteerden met en reflecteerden op nieuwe manieren van betrokkenheid en sloten af met een heterogene focusgroep (medewerkers en bewoners samen). Zowel medewerkers als bewoners zagen het belang in van betrokkenheid van bewoners bij de dagelijkse zorg. Het verschil in perspectief op hoe dit er dan uit zou moeten zien, zorgde echter voor uitdagingen. We vonden drie dilemma’s voor de betrokkenheid van bewoners in de intramurale zorg: autonomie versus afhankelijkheid, persoonli...
International Journal of Environmental Research and Public Health
This study investigates whether there are differences in quality of life—i.e., psychosomatic comp... more This study investigates whether there are differences in quality of life—i.e., psychosomatic complaints and life satisfaction—between schoolchildren with and without a chronically ill or disabled parent at home. It also examines the role played by the intensity of tasks, life circumstances, and social support at home and school. In 2017, a Dutch representative sample of adolescents aged between 12 and 16 (from the Health Behaviour in School-aged Children study) completed a questionnaire about illness of family members, tasks at home, life circumstances and characteristics, social support, psychosomatic complaints and life satisfaction. In total, 5470 schoolchildren who did not have a parent with a chronic illness and 652 who did have a parent with a chronic illness were selected (average age 13.9). Stepwise multilevel logistic regression analyses in STATA were used. Schoolchildren with an ill parent had more psychosomatic complaints and lower life satisfaction than their counterpart...
SamenvattingIn dit artikel gaan we na of het hebben van een langdurig ziek gezinslid bij scholier... more SamenvattingIn dit artikel gaan we na of het hebben van een langdurig ziek gezinslid bij scholieren samenhangt met spijbelgedrag. De gegevens zijn afkomstig van het Health Behaviour in School-aged Children-onderzoek uit 2013, een representatief onderzoek onder Nederlandse middelbare scholieren die het regulier onderwijs bezoeken in de leeftijd van twaalf tot en met zestien jaar (n = 5.168). Behalve naar spijbelen en het hebben van een ziek gezinslid is gekeken naar sociaal-demografische kenmerken en ervaren sociale steun. Een op de tien scholieren rapporteert minstens één lesuur te hebben gespijbeld in de maand voorafgaand aan het onderzoek. Scholieren met een langdurig ziek gezinslid zijn vergeleken met scholieren zonder ziek gezinslid vaker meisjes, maken vaker deel uit van gezinnen met een lagere gezinswelvaart, komen vaker uit onvolledige gezinnen en ervaren minder steun thuis. Vergeleken met andere scholieren spijbelen scholieren met een langdurig ziek gezinslid niet vaker, maa...
International Journal of Environmental Research and Public Health, 2022
Over the previous years, the residential care sector has gone through a transition from a rather ... more Over the previous years, the residential care sector has gone through a transition from a rather paternalistic approach towards a more democratic way of caregiving. Nevertheless, many care organizations still find it challenging to engage their residents in the process of care. In this study, we investigated the challenges regarding the engagement of older adults in residential care. As recent studies indicated the increasing opportunities of ICTs, we paid particular attention to this in the process of engagement. We followed a participatory action research approach among caregivers and older adults at a somatic care department in a care residence in the Netherlands. Methods used included 15 participants in two homogeneous group sessions, reflections on action in practice, and one mixed focus group. Our findings show that both caregivers and older adults acknowledge the importance of engagement in daily care. However, their different perspectives on how this should take place, made ...
Background: Reminiscence can be beneficial for social and emotional wellbeing at older ages, yet ... more Background: Reminiscence can be beneficial for social and emotional wellbeing at older ages, yet little is known about what this process looks like as well as about Information and Communication Technologies' (ICTs) potentials. Broader understanding would allow us to better tailor interventions and make them more effective using ICTs. Objective: This qualitative study aims to gain insight into the process of recalling memories in daily life among independent older adults, with special attention to the role of ICTs. Method: We used a two-step approach, starting with explorative interviews with older adults (N=20), aged 75 to 95, about their experiences with recalling memories. After this, participants used a diary to track examples of memories over three weeks. We returned to elaborate on the cases described by the participants. Results: Four stages were derived from the data, including the start of a memory; motivations for pursuing or ignoring a memory; engagement with the memory; and next steps. We found that ICTs are used mainly at the beginning of the process as well as in the stage of engaging with the memory. Conclusion: ICTs can facilitate sensory triggers, unlock information to complete a memory, and facilitate the company of others-either triggering or sharing memories. Whereas existing interventions mainly focus on initiating memories, often with old triggers, our findings suggest that recalling memories can play a valuable role in connecting older adults with others across age groups. ICTs can facilitate this interaction in several ways.
Het SCP onderzocht samen met de Vrije Universiteit (VU) Amsterdam in hoeverre scholieren (12-16 j... more Het SCP onderzocht samen met de Vrije Universiteit (VU) Amsterdam in hoeverre scholieren (12-16 jaar) die een langdurig ziek gezinslid hebben, verschillen van degenen zonder ziek gezinslid op ervaren gezondheid, psychosomatische klachten, levenstevredenheid en schooldruk. Ook keken we naar tijdsbesteding aan taken thuis en steun vanuit de omgeving als mogelijke verklaringen voor verschillen tussen deze groepen scholieren. De studie is gebaseerd op een enquete die eind 2017 is uitgezet onder scholieren in Nederland (Health Behaviour in School-aged Children studie, HBSC’17). Aan dit onderzoek deden 6500 respondenten van het voortgezet onderwijs mee, inclusief ruim 1200 met een langdurig ziek gezinslid. Langdurig ziek betekent dat het om een situatie gaat die langer dan drie maanden duurt en waarbij sprake is van een lichamelijke of psychische aandoening (zoals kanker, suikerziekte, hartziekten, depressie, verslaving, autisme of een verstandelijke beperking).
The European journal of health economics, Jan 31, 2024
Faced with an unprecedented demand for long-term care, European health care systems are moving to... more Faced with an unprecedented demand for long-term care, European health care systems are moving towards mixed care models, where the welfare state and informal caregivers share care responsibilities. While informal care is often viewed as a means of alleviating pressure on public care, it comes with significant economic costs for caregivers, their employers, and society at large. This study uses nationally representative data to estimate the total direct (informal care time and out-of-pocket costs) and indirect (productivity) economic costs of informal care in the Netherlands in 2019. Informal care time costs are estimated using the opportunity cost and the proxy good methods. Indirect costs are estimated using the human capital and friction cost approaches. Our results reveal the considerable annual societal cost of informal care in the Netherlands, ranging between €17.5 billion and €30.1 billion, depending on the valuation approach. These costs are equivalent to 2.15% and 3.71% of Dutch GDP in 2019, comparable to the public expenditure on long-term care in that year. Female caregivers account for slightly more than half (53%-57%) of the total costs. Around 57%-88% of these costs are in the form of informal care time. The main driver of indirect costs is the temporary cessation of work, which comprises 12%-17% of the total costs. Findings corroborate that substantial resources, yet thus far largely disregarded, are spent on informal care even in a country with a relatively generous public long-term care system.
Little is known about the effects of informal care-giving on employees' absenteeism due to illnes... more Little is known about the effects of informal care-giving on employees' absenteeism due to illness. This paper therefore provides a longitudinal analysis of the consequences of taking on informal care-giving for men's and women's working hours and workplace absenteeism due to illness. Data were taken from the Dutch Labour Supply Panel (waves 2004-2018); 495 of the 6,452 male observations in this panel and 696 of the 5,961 female observations had taken on informal care-giving. It was tested whether respondents who became (intensive) informal carers were more likely than respondents who remained non-care-givers to reduce their work hours or stop working between waves t and t1, or to be absent from work due to illness in wave t1. (Multinomial) logistic regression analyses showed that taking on informal care reduced women's working hours when the care they provided was intensive, but not men's. The predicted probability of women reducing their work hours was 12 per cent if they had remained non-care-givers between waves t and t1, 15 per cent if they had started giving non-intensive care and 19 per cent if they had begun providing intensive help. In addition, starting to provide (non-intensive) informal care increased the riskof workplace absenteeism among both women and men. The study highlights the need for workplace policies that prevent female carers from reducing their work hours, and enable male and female carers to continue working in a healthy way.
Tijdschrift Voor Gerontologie En Geriatrie, Dec 1, 2011
Caring friends and neighbors as informal caregivers of older adults: A comparison with offspring ... more Caring friends and neighbors as informal caregivers of older adults: A comparison with offspring This study compared informal care to older, non-coresiding adults provided by friends and neighbours and informal care by children or their partners. Using data from a Dutch representative survey among informal caregivers conducted by CBS and SCP, caregivers of friends (n=133), neighbours (n=108) and parents (n=1,008) were compared with one another to investigate care that friends and neighbours provide to the elderly non-coresiding adults (age 55 and over). Nine percent of those providing care to someone outside the household were friends and nine percent were neighbours. Friends, like children, usually provide long-lasting care, up to four or five years. Friends are similar to neighbours in the number of hours that they provide care. Friends and neighbours experience a lower caregiver burden than children. However, when fulfilling multiple caring tasks, both friends and children, have a greater chance of experiencing higher levels of burden. When there were other caregivers to help, friends experienced a small reduction in burden. Friends and neighbours deserve to be recognized as informal caregivers by policy makers and they deserve attention and support along with family caregivers.
Abstract Inspired by both classical theories on technology adoption and gerontological theories o... more Abstract Inspired by both classical theories on technology adoption and gerontological theories on social and emotional ageing, we aim to better understand barriers and benefits in ICT use among older people with cognitive impairments. Through qualitative interviews (N = 35) among this population as well as important network members, we obtained a detailed picture of the role of ICTs in their everyday lives. First, we find that older individuals with cognitive impairments perceive ICTs as useful when these contribute to the satisfaction of social and emotional needs in terms of relationships, hobbies or daily activities. Second, ICT use among our group is jointly determined by perceived usefulness (PU), and perceived ease of use (PEU), with PU motivating individuals to increase PEU. Third, the social network plays an important role in encouraging and discouraging ICT use: by providing assistance, taking the first step, restricting access or indirect use. The latter refers to shared use, where devices are operated by others. Fourth, we point out the importance of voluntariness in using ICT: some participants were so restricted by others in their ICT use that this reduced their perception of control. We conclude by providing recommendations for family members, caregivers, and ICT developers.
Original title: Blijvend in balans; een toekomstverkenning van informele zorg. What will informal... more Original title: Blijvend in balans; een toekomstverkenning van informele zorg. What will informal care look like in 2020? What can the government do about problems which may arise with regard to informal care? It is often assumed that there will be less informal care in the future. However, forecasts suggest that the number of people giving and receiving care will remain in balance. Nonetheless, there are a number of key social and cultural trends which will put pressure on the provision of informal care. The rising labour participation rate of women and older people, the growing geographical distances between relatives and the overall higher education level all have a negative influence on the availability of care. In addition, many people in need of care actually prefer professional care because they find it difficult to receive help from their close relatives. There are also positive trends, however, such as the rise in the number of potential caregivers among older persons. The balance of supply and take-up depends not only on the choices people themselves make; government policy also has a clear influence. For example, people are increasingly combining paid work with care tasks; this means the importance of leave arrangements is becoming ever greater. In this publication SCP, at the request of the Dutch Ministry of Health, Welfare and Sport (VWS), brings together a number of background studies on the future of informal care.
Informal care, meaning taking health-related care of people in their own social network, is a top... more Informal care, meaning taking health-related care of people in their own social network, is a topic that gets more and more attention in social science research because the pressure on people to provide informal care is rising due to ageing societies and policy changes. The Informal Care Model developed by Broese van Groenou and de Boer (Eur J Ageing 13(3):271-279, 2016) provides a theoretical foundation to understand under what conditions a person provides informal care. We test this theoretical model by applying it to intrapersonal changes in informal care provision during the first COVID-19 lockdown in the Netherlands in Spring 2020. Data from the LISS panel from two time points, March 2020 and data from July over the period of April/May 2020, were analysed with multinominal multilevel regression analysis (N = 1270 care situations of 1014 caregivers). Our results showed that the individual determinants (Do I have to?, Do I want to?, and especially Can I?) discussed in the Informal Care Model (apart from a series of control variables) are contributing substantially to the understanding of intrapersonal changes in care provision during the first lockdown and by that, we found empirical support for the theoretical model. We conclude that on top of its original purpose to explain between-individual differences in informal caregiving using static indicators, the Informal Care Model is also useful to explain intrapersonal changes in informal caregiving using dynamic indicators.
Net als in eerdere rapportages van toekomstverkenning van mantelzorg blijkt ook uit dit onderzoek... more Net als in eerdere rapportages van toekomstverkenning van mantelzorg blijkt ook uit dit onderzoek dat in de toekomst (tot 2030) geen onrustbarende kloof tussen aantallen ontvangers en verleners van mantelzorg wordt verwacht. In eerdere adviezen van het SCP over de mantelzorg is aandacht gevraagd voor de vaak problematische combinatie van werken en helpen. Er is in dat verband gewezen op de spanning tussen twee doelen van beleid: 'meer mensen langer aan het werk' en 'grotere eigen verantwoordelijkheid van burgers voor hun hulpbehoevende netwerkleden'. In deze studie is die spanning in cijfers gevat. De cijfers tonen dat de stijgende arbeidsdeelname - die het kabinet nodig acht omdat de Nederlandse beroepsbevolking krimpt - een prijs heeft in de vorm van verlies van informele steun. Dit verlies kan leiden tot een groter beroep op professionele hulp, tenzij verlofregelingen worden verbeterd.
Original title: Portretten van Mantelzorgers. There are more than a million people in the Netherl... more Original title: Portretten van Mantelzorgers. There are more than a million people in the Netherlands providing informal care, making this the most widely given form of care. Who are these informal carers and why are they willing to spend sometimes years selflessly helping others? This publication gives a voice to informal carers themselves. During four group discussions, in which nearly 40 male and female informal carers took part, they talked at length about their daily lives and about what it is like to care for a loved one. They also described the problems they encountered and their contacts with the authorities. One striking finding to emerge was that many informal carers have comparable working styles. Six of these styles are considered in this report: the born informal carer, the dynamic informal carer, the angry informal carer, the resigned informal carer, the indispensable informal carer and the overstressed informal carer. 16 informal carers with a specific working style recount their stories in the report. The differences between male and female carers also receive wide attention. The final chapter looks at what policymakers and professionals can learn from this diversity in the informal care circuit. What are the traps in the life of the born informal carer? Who manages to cope successfully with the personal budget system? How should the angry informal carer be approached? What is the best way to help the indispensable carer? This is the third publication produced as part of the 'Informal Care' research programme.
Dit artikel geeft inzicht in de mate waarin betaald werk en mantelzorg elkaar bij vrouwen en mann... more Dit artikel geeft inzicht in de mate waarin betaald werk en mantelzorg elkaar bij vrouwen en mannen in de weg zitten. De gegevens komen uit een tweejaarlijks onderzoek onder zo'n 4.800 werkenden en niet-werkenden van het Sociaal en Cultureel Planbureau (Arbeidsaanbodpanel, 2004-2014). In 2014 hielp 23% van de werkende vrouwen en 15% van de werkende mannen in de leeftijd 23-65 jaar een naaste bij de persoonlijke verzorging of het huishouden. Het grotere percentage mantelzorgers onder vrouwen komt vooral doordat dochters vaker dan zonen voor een ouder zorgen. Voor een schoonouder zorgen vrouwen en mannen vrijwel even vaak. Als vrouwen en mannen eenmaal met mantelzorg beginnen, verschillen de gevolgen nauwelijks van elkaar. Ze korten hun arbeidsduur niet in verhoogde mate in en stoppen niet vaker met werk, maar het langdurig verzuim stijgt, vooral bij langer aanhoudende zorg. Wel krijgen mannen meer gezondheidsklachten en vrouwen niet.
In Nederland verlenen meer dan een miljoen mensen mantelzorg, die daarmee de meest gegeven vorm v... more In Nederland verlenen meer dan een miljoen mensen mantelzorg, die daarmee de meest gegeven vorm van zorg is. Wie is mantelzorger en waarom is zij (of hij) bereid soms jarenlang op onbaatzuchtige wijze hulp te verlenen? In deze publicatie komen de mantelzorgers zelf aan het woord. Tijdens vier bijeenkomsten, waaraan bijna veertig mannelijke en vrouwelijke mantelzorgers deelnamen, vertelden zij uitvoerig over hun dagelijks leven en hoe het is om voor een naaste te zorgen. Ook stonden ze stil bij de problemen die ze tegenkwamen en hoe de contacten met de instanties verliepen. Het was opvallend dat veel mantelzorgers een vergelijkbare werkstijl bleken te hebben. Zes werkstijlen passeren de revue: de geboren mantelzorger, de aanpakker, de boze mantelzorger, de beruster, de onmisbare en tot slot de overspannen mantelzorger. Zestien mantelzorgers met een specifieke werkstijl vertellen hier hun verhaal. Ook de verschillen tussen mannelijke en vrouwelijke mantelzorgers komen uitgebreid aan bod. Het slothoofdstuk gaat in op wat beleidsmakers en professionals kunnen leren van deze verscheidenheid in de mantelzorg. Bijvoorbeeld: wat is de valkuil in het leven van de geboren mantelzorger? Wie kan er goed met een pgb overweg? Hoe moet je een mantelzorger tegemoet treden bij wie boosheid overheerst? Hoe help je de onmisbare helper het beste? Deze publicatie is de derde in het kader van het onderzoeksprogramma 'Informele zorg', en een vervolg op Blijvend in balans en Toekomstverkenning informele zorg.
ObjectivesTo facilitate care at the end of life at home, support from family caregivers is crucia... more ObjectivesTo facilitate care at the end of life at home, support from family caregivers is crucial. A substantial number of these family caregivers also work. Work in relation to care for terminally ill patients has received limited attention. To better understand the context in which these family caregivers provide care, we provide a detailed overview of the situation and experiences of family caregivers of terminally ill patients at home, with and without paid work.MethodsWe used a pooled cross-section of data from the Dutch Informal Care Study, collected in 2014 and 2016. All working and non-working family caregivers of terminally ill patients at home were included (n=292).ResultsWorking family caregivers reported more care tasks, and shared care tasks with others more often than non-working caregivers. No differences between working and non-working caregivers were found in negative and positive experiences. Non-working caregivers provided care more often because the care recipient wanted to be helped by them or because there was no one else available than working caregivers. About 70% of the working caregivers were able to combine work and family caregiving successfully.ConclusionsWorking and non-working family caregivers of terminally ill patients at home have similar burden and positive experiences. Working family caregivers vary in their ability to combine work and care. Although the majority of working family caregivers successfully combine work and care, a substantial number struggle and need more support with care tasks at home or responsibilities at work.
Deze publicatie schetst een systematisch en cijfermatig beeld van het toekomstig aanbod en gebrui... more Deze publicatie schetst een systematisch en cijfermatig beeld van het toekomstig aanbod en gebruik van informele zorg. Positieve trend is de stijging van het aantal relaties met zorgpotentieel bij ouderen. Ook bij andere groepen, zoals mensen met een verstandelijke beperking, is sprake van wat ruimte voor informele zorg. Er zijn ook ontwikkelingen die de informele zorgverlening temperen, zoals de toenemende arbeidsparticipatie van vrouwen en ouderen, de grotere geografische afstanden tussen familieleden en een geringere geneigdheid om informele zorg te geven, aspecten die sterk samenhangen met het stijgende opleidingsniveau van de bevolking. Daarnaast hebben lang niet alle mensen met beperkingen een voorkeur voor informele zorg; een deel voelt zich bezwaard hulp van naasten te ontvangen. Of het geven en het ontvangen van informele zorg in balans blijven, hangt niet alleen af van de kenmerken potentiele helpers en ontvangers, maar ook van de keuzen die de overheid maakt. Zo leidt een sterkere nadruk op de eigen verantwoordelijkheid voor het sociale netwerk bijvoorbeeld tot een grotere behoefte aan vrijstelling van betaalde arbeid. Dit onderzoek is uitgevoerd op verzoek van het ministerie van Volksgezondheid, Welzijn en Sport.
Little is known about the effects of informal care-giving on employees' absenteeism due to il... more Little is known about the effects of informal care-giving on employees' absenteeism due to illness. This paper therefore provides a longitudinal analysis of the consequences of taking on informal care-giving for men's and women's working hours and workplace absenteeism due to illness. Data were taken from the Dutch Labour Supply Panel (waves 2004–2018); 495 of the 6,452 male observations in this panel and 696 of the 5,961 female observations had taken on informal care-giving. It was tested whether respondents who became (intensive) informal carers were more likely than respondents who remained non-care-givers to reduce their work hours or stop working between waves t and t1, or to be absent from work due to illness in wave t1. (Multinomial) logistic regression analyses showed that taking on informal care reduced women's working hours when the care they provided was intensive, but not men's. The predicted probability of women reducing their work hours was 12 per c...
In de verpleeghuiszorg zagen we in de afgelopen decennia een ontwikkeling van een overwegend pate... more In de verpleeghuiszorg zagen we in de afgelopen decennia een ontwikkeling van een overwegend paternalistische aanpak naar een meer democratische manier van zorg verlenen. In veel zorgorganisaties zijn bewoners echter nog nauwelijks betrokken in de dagelijkse routine. In een participatief onderzoek op een somatische zorgafdeling in een grote stad in Nederland, onderzochten we de betrokkenheid van bewoners in het verpleeghuis. We organiseerden twee homogene groepssessies (medewerkers en bewoners afzonderlijk), experimenteerden met en reflecteerden op nieuwe manieren van betrokkenheid en sloten af met een heterogene focusgroep (medewerkers en bewoners samen). Zowel medewerkers als bewoners zagen het belang in van betrokkenheid van bewoners bij de dagelijkse zorg. Het verschil in perspectief op hoe dit er dan uit zou moeten zien, zorgde echter voor uitdagingen. We vonden drie dilemma’s voor de betrokkenheid van bewoners in de intramurale zorg: autonomie versus afhankelijkheid, persoonli...
International Journal of Environmental Research and Public Health
This study investigates whether there are differences in quality of life—i.e., psychosomatic comp... more This study investigates whether there are differences in quality of life—i.e., psychosomatic complaints and life satisfaction—between schoolchildren with and without a chronically ill or disabled parent at home. It also examines the role played by the intensity of tasks, life circumstances, and social support at home and school. In 2017, a Dutch representative sample of adolescents aged between 12 and 16 (from the Health Behaviour in School-aged Children study) completed a questionnaire about illness of family members, tasks at home, life circumstances and characteristics, social support, psychosomatic complaints and life satisfaction. In total, 5470 schoolchildren who did not have a parent with a chronic illness and 652 who did have a parent with a chronic illness were selected (average age 13.9). Stepwise multilevel logistic regression analyses in STATA were used. Schoolchildren with an ill parent had more psychosomatic complaints and lower life satisfaction than their counterpart...
SamenvattingIn dit artikel gaan we na of het hebben van een langdurig ziek gezinslid bij scholier... more SamenvattingIn dit artikel gaan we na of het hebben van een langdurig ziek gezinslid bij scholieren samenhangt met spijbelgedrag. De gegevens zijn afkomstig van het Health Behaviour in School-aged Children-onderzoek uit 2013, een representatief onderzoek onder Nederlandse middelbare scholieren die het regulier onderwijs bezoeken in de leeftijd van twaalf tot en met zestien jaar (n = 5.168). Behalve naar spijbelen en het hebben van een ziek gezinslid is gekeken naar sociaal-demografische kenmerken en ervaren sociale steun. Een op de tien scholieren rapporteert minstens één lesuur te hebben gespijbeld in de maand voorafgaand aan het onderzoek. Scholieren met een langdurig ziek gezinslid zijn vergeleken met scholieren zonder ziek gezinslid vaker meisjes, maken vaker deel uit van gezinnen met een lagere gezinswelvaart, komen vaker uit onvolledige gezinnen en ervaren minder steun thuis. Vergeleken met andere scholieren spijbelen scholieren met een langdurig ziek gezinslid niet vaker, maa...
International Journal of Environmental Research and Public Health, 2022
Over the previous years, the residential care sector has gone through a transition from a rather ... more Over the previous years, the residential care sector has gone through a transition from a rather paternalistic approach towards a more democratic way of caregiving. Nevertheless, many care organizations still find it challenging to engage their residents in the process of care. In this study, we investigated the challenges regarding the engagement of older adults in residential care. As recent studies indicated the increasing opportunities of ICTs, we paid particular attention to this in the process of engagement. We followed a participatory action research approach among caregivers and older adults at a somatic care department in a care residence in the Netherlands. Methods used included 15 participants in two homogeneous group sessions, reflections on action in practice, and one mixed focus group. Our findings show that both caregivers and older adults acknowledge the importance of engagement in daily care. However, their different perspectives on how this should take place, made ...
Background: Reminiscence can be beneficial for social and emotional wellbeing at older ages, yet ... more Background: Reminiscence can be beneficial for social and emotional wellbeing at older ages, yet little is known about what this process looks like as well as about Information and Communication Technologies' (ICTs) potentials. Broader understanding would allow us to better tailor interventions and make them more effective using ICTs. Objective: This qualitative study aims to gain insight into the process of recalling memories in daily life among independent older adults, with special attention to the role of ICTs. Method: We used a two-step approach, starting with explorative interviews with older adults (N=20), aged 75 to 95, about their experiences with recalling memories. After this, participants used a diary to track examples of memories over three weeks. We returned to elaborate on the cases described by the participants. Results: Four stages were derived from the data, including the start of a memory; motivations for pursuing or ignoring a memory; engagement with the memory; and next steps. We found that ICTs are used mainly at the beginning of the process as well as in the stage of engaging with the memory. Conclusion: ICTs can facilitate sensory triggers, unlock information to complete a memory, and facilitate the company of others-either triggering or sharing memories. Whereas existing interventions mainly focus on initiating memories, often with old triggers, our findings suggest that recalling memories can play a valuable role in connecting older adults with others across age groups. ICTs can facilitate this interaction in several ways.
Het SCP onderzocht samen met de Vrije Universiteit (VU) Amsterdam in hoeverre scholieren (12-16 j... more Het SCP onderzocht samen met de Vrije Universiteit (VU) Amsterdam in hoeverre scholieren (12-16 jaar) die een langdurig ziek gezinslid hebben, verschillen van degenen zonder ziek gezinslid op ervaren gezondheid, psychosomatische klachten, levenstevredenheid en schooldruk. Ook keken we naar tijdsbesteding aan taken thuis en steun vanuit de omgeving als mogelijke verklaringen voor verschillen tussen deze groepen scholieren. De studie is gebaseerd op een enquete die eind 2017 is uitgezet onder scholieren in Nederland (Health Behaviour in School-aged Children studie, HBSC’17). Aan dit onderzoek deden 6500 respondenten van het voortgezet onderwijs mee, inclusief ruim 1200 met een langdurig ziek gezinslid. Langdurig ziek betekent dat het om een situatie gaat die langer dan drie maanden duurt en waarbij sprake is van een lichamelijke of psychische aandoening (zoals kanker, suikerziekte, hartziekten, depressie, verslaving, autisme of een verstandelijke beperking).
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