Den här rapporten belyser personalens erfarenheter av att hantera covid-19-pandemin på fyra äldreboenden i Stockholm. Rapporten skildrar personalens vittnesmål om hur två år av pandemi har påverkat deras arbetssituation och de äldres omsorg. Studien bygger på intervjuer med omsorgspersonal, sjuksköterskor och enhetschefer. Vi undersöker vilka förutsättningarna var för att hantera pandemin, vilka åtgärder som vidtogs under pandemin för att hindra smittspridning samt vilka konsekvenser pandemin fick för personalen och för de boendes vård och omsorg.

Rapportens resultat

• Brister i information, hygienrutiner och kompetens försvårade hanteringen av pandemin. Även den generellt sett låga grundbemanningen och otrygga anställningsformer gav dåliga förutsättningar att hantera pandemin.
• Äldreboendena vidtog åtgärder i form av informations- och utbildningsinsatser, isolering av sjuka och smittade äldre, social distansering och ökad bemanning.
• Personalen berättar att bristande språkkunskaper och utbildningsbakgrund hos nyanställda försvårade arbetet under pandemin. De vittnar också om varierande kompetens hos utbildade undersköterskor och problem med att flera undersköterskeutbildningar inte håller tillräckligt hög kvalitet.
• Medicinska risker uppstod i början av pandemin genom begränsningar i möjligheten till sjukhusvård och att äldreboendenas läkare endast var tillgängliga på telefon.
• Att ny och outbildad personal utförde personnära vård och omsorg på egen hand innebar att insatsernas kvalitet äventyrades. Kvaliteten i vård och omsorg påverkades också av att omsorgens sociala aspekter fick stå tillbaka till förmån för ett starkt fokus på hygien och social distansering.
• De åtgärder som vidtogs under pandemin minskade självbestämmandet hos de boende. Det långa besöksförbudet medförde att de under lång tid inte fick träffa sina anhöriga. Åtgärder kring aktiviteter, isolering och samvaro i övrigt tycks ha utförts utan samråd med de boende. Personalen ställdes inför svåra avvägningar mellan den enskildes vilja och ansvaret att skydda andra boende mot smittspridning.
• Åtgärder för att minska smittspridning innebar att arbetsbelastningen ökade, att nya arbetsmoment tillkom och att personalen arbetade mer än vanligt. Personalen fick även ta ett större medicinskt ansvar.Pandemin medförde en ökad emotionell belastning för personalen. De kände oro och rädsla för att bli smittade och att smitta andra. Åtgärder för att minska smittspridning innebar dels att de boende blev mer passiva, nedstämda och oroliga, dels att personalen förhindrades att ge den tröst och sociala stimulans som kunnat motverka dessa konsekvenser. Personalen mötte i ökad utsträckning svår sjukdom och död bland personer som de haft en relation till. De vittnar om känslor av sorg och maktlöshet.

Rapportens slutsatser och rekommendationer

• Chefer och sjuksköterskor har under pandemin fått ta ett alltför stort ansvar för att samordna och sammanställa information från olika myndigheter till omsorgspersonalen. Det behövs åtgärder för ett samordnat och målgruppsanpassat informationsflöde.
• Socialtjänstlagen betonar den enskildes rätt till självbestämmande, inflytande och integritet. Att de boendes självbestämmande kraftigt begränsades under pandemin visar på vikten av att arbeta systematiskt med dessa frågor.
• Omsorgspersonalen behöver kontinuerlig vägledning om hur hygienrutiner upprätthålls och hur självbestämmande kan bevaras i den kollektiva miljö som äldreboendet utgör. Omsorgspersonal som är med om ovanligt svåra situationer i arbetet behöver också krisstöd.
• Bemanningen utgör en sårbarhet. Det behövs fler anställda, tryggare anställningsformer och högre kompetens för omsorgspersonal. De bör i huvudsak vara undersköterskor.
• Det behövs mer medicinsk kompetens på äldreboenden. Det krävs fler sjuksköterskor och bemanning av sjuksköterskor dygnets alla timmar.
• De sociala aspekterna av omsorgen har visat sig vara lika betydelsefulla som de medicinska. Omsorgspersonalen behöver ha både social kompetens och goda språkkunskaper för att kunna möta de äldres sociala behov och värna om deras livskvalitet.

In this comparative chapter, family members’ engagement in nursing home care in Ontario, Canada and Stockholm, Sweden are explored during Covid-19. The pandemic severely impacted residents, and accentuated pre-existing structural issues. In Ontario, families, who often fill in care gaps, were suddenly banned from nursing homes. Severe staffing shortages created gaps in care and communication issues, leaving families extremely worried about their relatives’ health and safety: family members collectively advocated for resident information, policy clarification and re-entry. In Sweden, although families were also denied access, higher staffing levels and a system of key contact persons meant more trust in care quality and better communication between homes and families. Moving forward, in both jurisdictions, families must be involved in resident care policies. In Ontario, improved staffing levels would allow for relational engagement with residents and families, and enable families to be involved in meaningful ways rather than filling in care gaps. 

In this chapter we explore contextual and social mechanisms in rural areas in Sweden, Norway and Ontario, Canada, and how they create and shape interactions between older people in care homes, their families, the staff and the volunteers. Geographical and physical conditions frame the outer context and impact service provision and how people relate to each other.

Rapporten undersöker hur den svenska äldreomsorgen har förändrats över tid. Hur har förändringarna påverkat de äldre, och hur har de påverkat deras anhörigas förvärvsarbete? Vi bygger på nya analyser av SCB:s stora intervjustudier av befolkningens levnadsförhållanden (ULF), samt tidigare svensk och internationell forskning. Vi jämför förändringarna under 1980- och 1990-talen med förändringarna under 2000-talet.

Having both children and aged parents with care needs while being in paid work is probably more frequent, but less problematic, in Sweden compared to most other welfare states. Although the average Swedish woman has almost two children during her lifetime and it is very common in mid-life to care for aged parents, women remain in paid work due to highly accessible publicly financed child- and eldercare services.

The main focus in Scandinavian child- and eldercare policy is to make the individual’s welfare less dependent upon their possibilities to purchase care services at the market and to receive care from the family; ambitions described by the two concepts universalism and de-familization. This chapter examines the meaning of economic and social de-familization (economic and social autonomy) in two types of care relationships – parental childcare and filial care – as well as from two perspectives: the perspective of the person in need of care and the potential or actual caregiver.

Care services, as well as payments for care and care leave, have increased for childcare and decreased for eldercare in Sweden during the last three decades. While the development of childcare services stands out as a success story resulting in nearly universal access, Sweden has transformed its formerly universalistic eldercare system into a more selective and familialistic one. The decline in eldercare services is contrary to law, national policy and the care preferences of older persons. Their right to autonomy and self-determination has been drastically curtailed.

The aim of this paper is to analyse the extent, content and consequences of family caregiving among middle-aged women and men in Sweden today. The analysis focuses on gender and level of education, using data on persons aged 45-66 years from a nationally representative postal survey (n=3630) conducted in 2013.

Eldercare services are a crucial part of the Nordic welfare model. In Sweden, public eldercare services have decreased since the 1980s, at the same time as informal care and private services bought in the market have increased. The Swedish eldercare system has moved away from its de-familialising potential and the principle of universialism, towards a partially familialistic and selective system. Informal care, in particular care provided by daughters, has increased mainly among older people with fewer resources. Although few older people buy private care services in the market, such purchases have increased among well-off groups of older people since the 1980s.

This paper analyses sources of care among older people in Sweden from 1988 to 2010, using data from the Living Conditions Survey (ULF) by Statistics Sweden. The focus of the analysis is on how different social groups of older people have been affected by the decrease in eldercare services as well as by the increase in informal care and privately purchased services. The analysis concerns social class, gender and country of origin. The paper discusses the consequences for older people and their children of these shifting boundaries of care from the perspective of the Nordic welfare model’s strive for equality.

Starting with the ideals of universalism and de-familisation, this article analyses the role of the state, the family and the market as providers of care for older people in different social groups in Sweden in the 2000s. The analysis is based on data from the Swedish Living Conditions Surveys for the years 2002–2003 and 2009–2010, with a total of 1,805 individuals in need of practical help aged 65 years and older.

In the 2000s the number of beds in residential care was reduced by one fourth, thus increasing family care considerably in all social groups. However, there was an interaction between class and gender. The help given by daughters increased primarily among older people with lower levels of education while the help given by sons increased primarily among those with higher education, making the help given by sons and daughters equally common in this latter group.

Stimulated by the introduction of a tax deduction on household services and personal care in 2007, privately purchased services also increased. These services, however, still play a marginal role, in particular for older people with lower levels of education. A class-related pattern remains in that family care is more common among older people with less education whereas privately purchased services are more common among those with higher education. Thus, even if there is a trend of re-familisation in all social groups, the dualisation of care challenging universalism remains, and working class daughters are still the most affected by the cutbacks.

Äldreomsorgen och barnomsorgen har samma funktion: att göra det möjligt för framförallt kvinnor att försörja sig genom eget förvärvsarbete. Men tillgången och kvaliteten på omsorgstjänsterna behöver förbättras och rätten att "vaffa" borde införas.

Women’s and men’s lial care: extent, content and consequences

This paper analyses the extent, content and consequences of caregiving for elderly parents from a gender and welfare state perspective using a nationally representative postal survey conducted in Sweden in 2013 (response rate 60.5 per cent, 3630 individuals, age 45–66 years). Negative consequences of filial care on well-being, work situation and employment were examined. The analysis confirms earlier research showing that filial care is common in Sweden but is less intense and has fewer negative consequences than in less generous welfare states. A quarter of both women and men gave filial care at least once a month, on average around 3.4 hours a week.

Although men and women gave the same extent of filial care, it was more common among women to give the more demanding personal care as well as to experience mental and physical strain, difficulties in finding time for leisure activities and reduced ability to focus on their job. Although women retired earlier than planned due to filial care more often than men, this was very rare. Men and women, however, suffered to the same extent from difficulties in managing to accomplish their tasks, to take part in meetings, courses and travels, as well as having to reduce their working hours and quit their jobs.

The content of care was crucial for the occurrence of negative consequences of caregiving, even when the analysis controlled for hours of care given. The more demanding the care tasks performed, the more common it was among both men and women that their well-being and work situation were affected. The correlation between care tasks and negative impact, however, differed between genders. The impact of managerial care was much higher for women than for men, which is discussed in relation to the decline of eldercare services and the lack of coordination of health and eldercare services.

The starting point of this paper is that widely available elder care services of good quality are seen as an essential support for family carers, which has made it possible especially for daughters of frail older people to combine family care and paid labour.

The aim of the paper is to analyze problem representations and outcomes of Swedish elder care policy concerning the next-of-kin of older people. How are next-of-kin and their role in elder care described in policy documents? And what outcomes (in terms of policy proposals as well as coverage of care services and payments for family care) are associated with different descriptions? The materials analyzed are Government Bills on eldercare from 1957 to 2006.

The analysis indicates that it has been uncommon in Swedish elder care policy to regard public elder care services as important for next-of-kin. During the expansion period (1950s to 1970s) of the public care services, their needs were hardly mentioned. The expansion was motivated only in relation to the needs of older people. From the 1980s onward, the Government has stressed the need of public support for family carers and has taken several measures to improve their situation. However, public elder care services as well as financial support to family carers have decreased during the same period, and it was still uncommon to regard public care as a form of support for family carers.  

This thesis examines the extent of family care for older people, primarily filial care, and the costs of caring in the Swedish welfare state. Costs of caring are understood as the negative effects of caregiving, primarily on the caregivers’ working life. The analysis is inspired by feminist theories on the importance of welfare state provisions for care for women’s citizenship, including personal autonomy and economic independence.

The main aims of this thesis are twofold. The first is to explore the extent and development of family care for older persons in Sweden, primarily filial care, and the consequences of caregiving for well-being and working life. The second is to explore how older persons’ family members have been represented and the possible consequences of these representations for the development of publicly financed eldercare services and other forms of support for family carers, as well as for family members’ living conditions.

The thesis consists of four studies. The first reviews the literature concerning the extent and consequences of family caregiving for older persons and the welfare state’s policy responses to older people’s care needs. The second study analyses how older persons’ family members and their role in eldercare have been represented in Swedish eldercare policy since the 1950s. The third study analyses surveys to explore changes during the 2000s in the role of the family, the public sector and the market in providing care for older persons in Sweden. The fourth study is a survey analysis of the extent, content and consequences of filial care among middle-aged women and men in Sweden in 2013.

The policy analysis found that the expansion of eldercare was motivated solely in relation to older persons’ needs; thus working daughters’ needs of eldercare have been a blind spot in Swedish eldercare policy.

Since 2000, every fourth residential care bed has disappeared and the increase in homecare services did not fully compensate for the decline, resulting in a significant increase in filial care in all social groups, and among both sons and daughters. Daughters of older persons with shorter education, however, remained the primary providers of filial care.

Both daughters and sons are affected by caregiving. They suffer to the same extent from difficulties in managing to accomplish their work tasks and taking part in meetings, courses and travels. They are also equally likely to reduce their working hours and to quit their job. It is however clearly more common that daughters experience mental and physical strain, difficulties in finding time for leisure and reduced ability to focus on their job. Although more daughters than sons retire earlier than planned due to filial care, this is very rare.

Managerial care (handling contacts with health and eldercare services) has a more salient role in a welfare state such as Sweden, with generously provided care services, less intense filial care and high employment rates among both sexes. The high labour force participation however makes middle aged children more vulnerable when their parents’ care arrangement does not work. The decline in eldercare services since 1980 has reinforced co-ordination problems in health and eldercare services. The managerial care required to handle this development, while living up to the demands of work and family life, stands out as especially demanding for the well-being and working lives of daughters.

This study analyses the role of gender and educational attainment in the extent and perceived consequences of family caregiving in middle age in Sweden, using data on persons aged 45–66 years from a nationally representative postal survey (n = 3630) conducted in 2013. The results confirm previous research regarding the role of gender and contradict it regarding the role of class. Among female caregivers, higher education is associated with lower well-being, work performance and labour force participation relative to lower educated caregivers. When controlling for care intensity and other characteristics, these associations mostly remained. No significant associations were found among men. The results are discussed in the light of deteriorating working conditions in welfare service occupations in which many higher educated women work, and how service decline and increased fragmentation of eldercare increase the need for managerial caregiving (i.e., coordinating and handling contacts with authorities and care providers). For Swedish women, managerial caregiving increases risks of negative impacts on well-being and work performance to the same extent as providing personal care. More research is needed to understand these surprising results. Tentative conclusions are that higher educated women experience more strain from combining paid work with family care, as their caregiving is more demanding and they more frequently work full-time in high strain jobs. As they also have higher incomes, they both need and can afford to decrease their work hours to a greater extent.

Background: In Sweden since the 1980s, LTC services have declined, followed by an increase in informal care. Studies on the intensity and consequences of this kind of caregiving are sparse in Sweden. The paper analyzes the meaning of gender and country of birth for the extent and consequences of informal caregiving in Sweden. Methods: Analysis is based on a postal survey (n=3630, aged 45-66 years) from 2013. Results: Of the respondents, 28% are caregivers, defined as providing help at least once a week to a family member, relative or friend with a disability or longstanding illness. Immigrant women provide the most intensive care (14.1 hrs/week), compared to immigrant men (6.9 hrs/week) and both women and men. Conclusion: Informal care in Sweden has a gendered as well as an ethnic component.

Care services help women who are mothers or daughters to combine caregiving and gainful employment. While Swedish childcare policy expanded services to meet the needs of children and working mothers, this discourse analysis of Swedish eldercare policy shows that the expansion of eldercare services from the 1950s to the end of 1970s was justified solely on the basis of older people's needs. The lack of connection in policy documents between the needs of working daughters and the provision of eldercare services made it easier to cut services beginning in the 1980s, without considering the consequences for family members.

Sedan slutet av 1990-talet har det runt om i landet blivit allt vanligare med olika former av anhörigstöd. Målgruppen för kommunernas stödär framförallt äldre personer som vårdar sin make eller maka. I denna artikel beskriver Petra Ulmanen hur situationen kan te sig för de äldres döttrar i rollen som anhöriga. Hon diskuterar också – utifrån ett jämställdhetsperspektiv– hur denna grupp anhöriga skulle kunna stödjas. Petra Ulmanen har varit sekreterare i utredningen Makt att forma samhälletoch sitt eget liv – jämställdhetspolitiken mot nya mål, och är nu verksam som doktorand vid Socialhögskolan i Stockholm.

Formally provided eldercare services have declined in Sweden since the 1980s, followed by an increase in assistance from children, relatives and friends. This kind of informal care is most common among older people with lower levels of education and among older people born outside the Nordic countries. Although previous studies have concluded that daughters are the main providers of informal care regardless of country of birth, we still lack studies comparing the intensity and consequences of informal caregiving across different population groups in Sweden.

The aim of this paper is to analyse the role of gender and country of birth (born in Sweden or other Nordic countries vs in non-Nordic countries) for the extent and consequences of informal caregiving in Sweden. The analysis is based on a nationally representative postal survey (n=3630, aged 45-66 years) from 2013. 

Results: In the middle-aged population, 26% are caregivers, defined as providing help at least once a week to a family member, relative or friend with a disability or longstanding illness. 80 per cent of caregivers primarily assist an older adult (65 years+). While the proportion providing care does not differ significantly between the groups, non-Nordic immigrant women provide the most intensive care (13.2 hrs/week), compared to immigrant men (6.7 hrs/week), and both women and 75   men born in the Nordic countries (6.1 and 4.7 hrs/week respectively). Of the four groups, immigrant women most frequently provide the most demanding forms of care (personal and/or medical care as well as co-resident care), and are the group most negatively affected by caregiving, also when controlling for the amount of care provided. Country of origin however matters also for men. Compared to men born in the Nordic countries, non-Nordic immigrant men do more frequently provide the most demanding forms of care, and are more negatively affected by caregiving, also when controlling for the amount of care provided. Among female caregivers, immigrants are more affected in all four areas examined: well-being, work situation, labour force participation and economy. Among male caregivers, immigrants are more affected in all areas except labour force participation. 

Altogether, the study points to the conclusion that non-Nordic immigrants are more negatively affected by caregiving than persons born in the Nordic countries, and that this is valid for both sexes, although immigrant women are the group most affected. That immigrant caregivers, both women and men, provide more demanding forms of care, may reflect that the persons they assist do not have access to care services to the same extent as other groups, and/or that the services are not suitable for their needs. This raises questions about inequalities in access to care services and needs of culturally sensitive care services. Even when controlling for the amount of care provided, immigrants are more affected by caregiving, and this is valid for both sexes, which may be related to their general weaker positions on the Swedish labour market. Only among female caregivers, however, immigrants are more affected in their labour force participation, which points to caregiving as a threat to primarily immigrant women’s economic independence.

In this chapter, we show how state policies and the structural features of formal care systems in Sweden and Ontario, Canada, shape family members’ unpaid care work for relatives in the lead-up to admission to a nursing home. This unpaid work includes the navigation and advocacy work required to seek, apply for and enter nursing home care. We also show how the entry of their relatives to nursing home care changes family members’ unpaid care work in these two jurisdictions.

This article analyses the changing roles of the state, family and market in providing care for older people in Sweden, in relation to Scandinavian welfare ideals of universalism and de-familisation. Since 2000 every fourth residential care bed has disappeared and the increase in homecare services has not compensated for the decline. Instead family care (defined here as help from adult children and other non-cohabiting family or friends) has increased in all social groups: help by daughters mainly among older people with shorter education and help by sons among those highly educated. Use of privately purchased services has also increased but continues to play a marginal role. Family care remains more common among older people with less education whereas privately purchased services are more common among those with higher education. This dualisation of care challenges universalism, and working-class daughters continue to be most affected by eldercare cutbacks.

Pressen att vårda sina gamla föräldrar har ökat bland döttrarna till lågutbildade äldre. Våra nya beräkningar visar att närmare 60 000 kvinnor i dag har gått ner till deltid eller lämnat sitt förvärvsarbete helt för att kunna vårda gamla eller sjuka anhöriga. Välbärgade medelålders kvinnor kan med det nya skatteavdraget köpa billig hushållshjälp till sina föräldrar. Det kan inte arbetarklassen. Nya avdragen för hushållsnäratjänster gynnar då jämställdheten bara för de rika. Det skriver i dag professor MARTA SZEBEHELY och doktorand PETRA ULMANEN vid Institutionen för socialt arbete, Stockholms universitet.