Disabled people, including those with autism, are common among those not in education, employment or training (NEET). This leaves caregiving parents to manage a perceived gap between their adult child’s needs and available welfare resources. This study examines how parents provide care in this context, where caregiving is often invisible and unpaid. The research draws on the frameworks of James (1992) and Horowitz (1985), using 20 narratively structured interviews with parents in this caregiving position, which are analysed using an abductive thematic approach. Findings reveal the overarching theme – Managing care to become unneeded: spinning the wheels – where the parents strive to support their adult children’s well-being and independence but face obstacles linked to unsuitable and non-responsive welfare resources. Many parents described their efforts as ‘spinning wheels’ but making little progress. This was commonly explained by a misfit between the services offered and their adult children’s motivation, which had been shaped by their disabilities and past setbacks, making it difficult to seek formal care independently. The study highlights how love and moral obligation influence power dynamics in care relationships and underscores the need to adapt and elaborate theoretical frameworks to capture the complexities of caregiving.

This chapter examines managerial care as a family caregiving task involving handling contacts with health and social care services to ensure they meet the older person’s care needs. While managerial caregiving can reduce informal care responsibilities without leading to care poverty, it may reproduce inequalities by affecting the extent to which care needs are met. This chapter explores family members’ managerial caregiving regarding the tasks involved, the resources used, the challenges faced, and whether and how the interplay between gender and class matters for these issues. The chapter found that managerial caregiving involves identifying what services are needed and whether they are available, accessing and mobilising services, monitoring and evaluating services, and making complaints and coordinating services. Although female carers seem to have used all available resources in their extensive managerial caregiving, they seldom succeeded in making services work. So, they continued providing both hands-on care and managerial care to avoid care poverty and experienced more caregiving burden than men. While access to resources did not seem to reduce women’s managerial caregiving or burden, it benefited the care receivers and possibly male carers. Thus, while managerial caregiving alleviated care poverty, the needs of female carers, in particular, remained unmet.

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.

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.

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. 

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.

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.