The care receivers perspective: How care‐dependent people struggle with accepting help from family members, friends and neighbours

Abstract

In many countries in north‐western Europe, the welfare state is changing, and governments expect a great deal of informal care. In the Netherlands, citizens are also increasingly expected to rely on informal instead of professional care. In this study, we aim to determine to what extent Dutch care‐dependent people want to rely on social network members and what reasons they raise for accepting or refusing informal care. To answer this question, we observed 65 so‐called ‘kitchen table talks’, in which social workers assess citizens’ care needs and examine to what extent relatives, friends and/or neighbours can provide help and care. We also interviewed 50 professionals and 30 people in need of care. Our findings show that a great deal of informal care is already given (in 46 out of 65 cases), especially between people who have a close emotional bond. For this reason, people in need of care often find it difficult to ask their family members, friends or neighbours for extra assistance. People are afraid to overburden their family members, friends or neighbours. Another reason people in need of care raise against informal care is that they feel ashamed of becoming dependent. Although the government wants to change the meaning of autonomy by emphasising that people are autonomous when they rely on social network members, people who grew up in the heyday of the welfare state feel embarrassed and ashamed when they are not able to reciprocate. Our findings imply that policymakers and social professionals need to reconsider the idea that resources of informal care are inexhaustible and that citizens can look after each other much more than they already do. It is important that social policymakers approach the codes and norms underlying social relations more cautiously because pressure on these relations can have negative effects.

Vulnerable persons in society: an insider’s perspective

“…According to the Dutch government self-reliance includes the ability to carry out the necessary general daily life activities and to run a structured household (Bruggeman et al, 2018 ). Self-reliance refers to both individual independence—also called “own strength” and “self-care”—as well as the ability to request and receive informal help from people in one’s social environment (Bredewold et al, 2018 ). To a certain extent, our respondents are self-reliant, be it with help from their own social networks.…”

“…Citizens should rely less on government support. With the so-called leading principle of “own strength” the Dutch government wanted to clarify that an appeal for government support should not be an automatism (Bredewold et al, 2018 ; Bruggeman et al, 2018 ). Only when there are no other resources at hand, such as care by family members or money, an appeal to government aid becomes an option (Bruggeman et al, 2018 ; Rijksoverheid, 2013 ; Van Houten et al, 2008 ).…”

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

“…More generally, citizenship of adults with lifelong disabilities has been contested by changes in long-term care policies and accompanied austerities, resulting in fragmentation of healthcare and support services ( 18 , 35 , 47 ). Consequently, people must do more themselves and/or rely on unpaid care ( 48 ). Adults with CP are challenged to participate in their community and to find adequate healthcare and support ( 11 , 12 , 44 ).…”

“I Could Not Manage This Long-Term, Absolutely Not.” Aging in Place, Informal Care, COVID-19, and the Neighborhood in Flanders (Belgium)

“…Therefore, more research is needed about the coping strategies of older people themselves, particularly those without a family network, and what role the neighborhood plays in their cases. Nevertheless, other research confirms older people’s dismissive attitude, for example, towards help with groceries, which connotes independence [ 50 ].…”

“…At the same time, care receivers were reportedly reluctant to even ask other family members for help and care. Most of them grew up in a welfare state that stimulated people not to be dependent on family or friends for care needs, hence, asking for help might be seen as a failure [ 50 ]. Whereas the socialization of care fits into a neoliberal trend of reconfiguring the welfare state by encouraging people to depend more on their family and community, this trend is not yet fully integrated in people’s attitudes [ 10 , 51 ].…”