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.


| INTRODUC TI ON
In the Netherlands, the social domain has undergone a far-reaching change. Citizens have to become more self-reliant and face the new reality that the availability of professional care financed by the government is no longer self-evident. Citizens are increasingly expected to assume more responsibility to find solutions for their care needs themselves and to look after each other as much as possible. This new policy paradigm is motivated by the conviction that the welfare state, developed since the 1960s, is no longer sustainable due to economic (several financial crises) and demographic (aging population) reasons (Grootegoed, Bröer, & Duyvendak, 2013).
The restructuring of the welfare state took place hand in hand with the decentralisation of social care and social assistance to the municipalities in 2015 (Fenger & Broekema, 2019). The transfer of these responsibilities was accompanied by significant budget cuts of about 15%-20% (Bredewold, Duyvendak, Kampen, Tonkens, & Verplanke, 2018:221). The Dutch government took some concrete measures in line with their new policy paradigm to realise these cuts.
Several nursing homes were closed with the argumentation that old people can be best cared for in their home and by their social network, instead of moving to (much more expensive) residential care facilities. The government also made considerable cuts in day care and personal assistance for psychiatric patients, people with intellectual disabilities, and frail elderly, who live independently.
Henceforth they have to rely as much as possible on their social networks (Fenger & Broekema, 2019). Social professionals are expected to fulfil an important role in this 'activation policy'. It is their task to assess citizens' care needs and to determine to what extent family and other social network members can provide help (Newman & Tonkens, 2011).
Because of the retrenchment of the welfare state in western countries and this 'activation policy', informal care has been subject of a great deal of research. Research on informal care focuses on the scope and extent of the tasks of informal caregivers (e.g. Lapierre & Keating, 2013), describes the burden and costs experienced by caregivers (e.g. Pearlin, Semple, & Skaff, 1990;Prevo et al., 2018), investigates the support that caregivers need to maintain their caring role (e.g. Zapart, Kenny, Hall, Servis, & Wiley, 2007), focuses on divisions of responsibilities between informal caregivers and professionals (e.g. Jacobs, Broese van Groenou, Boer, & Deeg, 2014;Wittenberg, Kwekkeboom, Staals, Verhoeff, & Boer, 2017) and provides insight into the intentions to give care from the caregivers' perspective (e.g. Broese van Groenou & De Boer, 2016).
We found a few studies that concentrate on the changing welfare state and the higher expectations of informal care from the care receiver's perspective (e.g. Aronson, 2006;Grootegoed et al., 2013;McCann & Evans, 2002). These studies do not, however, give insight into how the type of relationship between people in need of care and possible informal carers influences the decision of the former to accept or refuse informal care. We think it is important to pay attention to this relationship, as it sheds light on the position of the care receiver and draws attention to dependency in relations (Tronto, 1993). Our study will concentrate on this care receiver's perspective, taking the anthropological and sociological gift theory as a starting point. This theoretical framework gives us insight into the interrelatedness between care giver and care receiver and can teach us more about what we might expect from the exchange in informal care relations in a shrinking welfare state.
Before we proceed to our outcomes, we will describe this theoretical framework.
Research shows that the exchange of material goods or intellectual property is fundamental to contact between people (Komter, 1998(Komter, , 2003Mauss, 1990Mauss, [1923). In the market, between strangers, reciprocity exists through immediate equal exchange. In relationships between family members and close friends, immediate equal exchange is not necessary. Nevertheless, expectations of reciprocity also characterise these relationships. The principle of reciprocity assumes that giving is called upon by receiving, which puts into action a chain of giving-receiving-giving. This reciprocity is the start of a relationship as is depicted by Mauss, 1990Mauss, [1923. According to this research, we may conclude that reciprocity is a common norm and pattern in relationships between people and that this exchange (giving-receiving-reciprocating) manifests itself differently within various relationships.
Research shows that the weaker the emotional bond is, the more important is the balance of reciprocity, and the more demands are placed on time, quantity or quality of the probable gifts given in return (Komter, 1998(Komter, , 2003Sahlins, 1972). In the relationship between parents and children, for example, where the emotional bond is close, this balance is absent. Parents tend to serve their children

What is known about this topic
• In the changing welfare state, the meaning of autonomy has changed. People are no longer considered independent when they rely on professional care, but when relying on their social network.
• Exchange in informal care relations manifests itself differently within various relationships.
• The closer the emotional bond, the less people talk about the exchange in the relationship.

What this paper adds
• Care receivers try to comply with the exchange codes that fit the specific relationship.
• Care receivers feel guilty and embarrassed when they need to receive more than they are able to give in return.
• Family members who give informal care risk becoming overburdened, particularly because they are not expected to discuss an imbalance in their relationship. hand and foot; they are at their children's disposal and do not expect their children to return this favour. However, in the relationship between, for example, neighbours, where the emotional bond is usually less close, reciprocity is the norm. Neighbours tend to exchange services based on a balanced exchange (Komter, 1998(Komter, , 2003Sahlins, 1972). Sahlins (1972) introduced the term 'generalised reciprocity' for relationships where expectations to receive something in return are less specific, with no demands placed on the time, quantity or quality of the probable gifts given in return. Generalised reciprocity is a characteristic of people with a close emotional bond. Sahlins speaks of 'balanced reciprocity' when relationships are less personal and more direct, and equal exchanges are expected without delay. How the social emotional bond relates to the balance of reciprocity is pictured in Figure 1.
Various studies in western countries show that people try to live up to the norm of the specific relationship (Bredewold, Tonkens, & Trappenburg, 2016;Ekeh, 1974;Komter, 2007;Uehara, 1990Uehara, , 1995. These studies indicate that people find it difficult to ask for help, regardless of how desperately they need it. People find it especially difficult when they think it does not fit their relationship with the caregiver. There is a high degree of 'reluctance to ask' (Linders, 2010), especially in relations where reciprocity is the norm. Not being able to reciprocate leads to feelings of shame and guilt (Grootegoed et al., 2013).
We are aware that this is a theoretical model based on research in western countries, and that the model will not suit all cultures. In fact, research convincingly shows that care perceptions and ideas about informal care vary from culture to culture (Cohen, Sabik, Cook, Azzoli, & Mendez-Luck, 2019;Verbakel, 2018). In summary, anthropological and sociological theory and empirical research suggest that reciprocity is the basis for interpersonal relationships and that every relationship has its own balance of giving and receiving that people tend to live up to. It seems important to respect this balancing in relationships. In this article we will further examine what happens when social professionals try to intervene in relationships and how care receivers react to this pressure. We aim to answer the following question: For what reasons do care-dependent people accept or refuse informal care, and how is informal care intertwined with the relation between care giver and receiver? 2 | ME THODS

| Observation during 'kitchen table talks'
As part of the Dutch care reforms, the local government is now responsible for people in need of care. These people have to ask their local government for support. In most Dutch municipalities so-called social district teams are the first and most important point of contact for residents who require support. Social workers from these teams visit care-dependent residents at their homes and discuss their needs (these conversations are called 'kitchen table talks'). Social workers assess the need for care and examine to what extent family members, friends or neighbours can provide help and whether professional care has to be provided. As people in need of care are no longer automatically entitled to professional care since the Dutch care reforms in 2015, they are dependent on how the social worker in their specific municipality assesses their request for help.
In line with the government's policy to live as long as possible independently in the community, professionals of the social district teams have to encourage their clients' network to undertake various tasks which are important to keep a household running, for example do the shopping, clean up, take on administrative tasks, accompany visits to the hospital or offer emotional support.
As in the Netherlands physical and medical support such as help with showering and administer medication is regulated by another law, social professionals who do undertake the kitchen table talks do not need to insist on such forms of support by the client's social network.

| In-depth interviews
To gain insight into the different ideas and experiences concerning the new policy paradigm of self-reliance, we interviewed caredependent citizens and social workers. After observing the kitchen

| Data analysis
The ing. For the analysis, we used the qualitative data analysis program ATLAS.ti. All data were anonymised. In the following section, we will describe the reasons people in need of care raise to accept or refuse informal care.

| Close emotional social bonds -naturally to count on but a risk of overburdening
Based on 65 observations of kitchen table talks, we can conclude that social network members already provided a great deal of informal care. In two-thirds of the cases, family members, friends or neighbours were already involved. The greatest part of informal care is given by family, and female family members provide most of this care. Other studies also show that particularly family members provide help (Ekeh, 1974;Komter & Vollebergh, 2002;Uehara, 1995) and that informal care is mostly done by women (e.g. De Klerk, 2017). However, studies also show that women are the greatest recipients of care, which relates to the longer life expectancy for women than men (e.g. McGuire, Anderson, Talley, & Crews, 2007). The fact that women receive more care than men is also visible in our study (see Table 1) and here too we find an Because of these distressing situations, care receivers do not want to increase the burden of family members and tell professionals that the capacity of their social network members is limited and reached.

| Protection of the nature of a relationshipfamily relations under pressure
We found that there are more reasons why people don't want to ask their family for (more) help. In some cases, people are afraid that their request for help will change the relationship. By not asking, people try to protect the nature of their relationship. Our study shows that young people and adolescents in particular want to disengage from their parents as a natural process of self-reliance. That is why these young people reject their parents' assistance. A quote from a kitchen

| Friendship under pressure
Care-dependent people not only think it is difficult to ask family members for help; we found they also find it difficult to ask this from That is unworthy of a man.

P4-CI
A young woman with psychiatric problems explains why she does not want to burden her friends: I mainly have contacts and friends outside of the world of psychiatry, and I find that extremely valuable. But you have to be very careful that you keep a proper balance in what you ask of these people; they must not take care for you. It is rather difficult for people to maintain friendship with someone like me. If it works well, that is quite an achievement. You want to take care of each other, but you do not want to take over the role of care provider because then it is no longer an equal friendship.

| Neighbourly contacts under pressure
Professionals also asked their clients if they can rely on support from their neighbours. However, most of them agreed with (western) unspoken neighbourly rules that contact with neighbours is supposed to be light and superficial: Woman: We've always been lucky to have nice neighbours. They've lived here for a long time now, and we always clean each other's driveway when it snows.
Social worker: So, you can ask your neighbours for support?
Woman: Oh no, we wouldn't ask them for support. P98-O Other research shows that neighbours prefer not to assist in daily care because they do not want to interfere in each other's private domains. Neighbours maintain distance to prevent inconvenience and neighbourly disputes (Bulmer, 1986(Bulmer, , 1987Jacobs, 1960;Linders, 2010).

| Self-reliance in practice
Apparently, many people in need of care do not want to draw on their social network members because they do so already and they want to protect the nature of their relationships. Asking network members to provide more care or assistance seems to put pressure on their relationship, which they want to avoid. People cherish their relationships and do not want to risk a disturbance of the existing 'balance'. Professionals sometimes try to extend the boundaries by asking whether clients can ask for slightly more help and support, but when they explain why they do not want to ask their network members for more help, professionals accept this:  Network not mentioned 2 out of 65 cases professionals did succeed in involving the social network. In 15 cases, the professionals tried to involve the social network but without success, and this outcome was related to the reasons explained above. In 45 cases, the social network was mapped, but social workers did not ask if the network could help because clients had already mentioned during the conversation that the network gave a great deal of help, or informal care was not (yet) necessary (12 cases).
Instead of stimulating self-reliance as prescribed by the Dutch government, professionals concluded that many people needed professional care. We found out professionals recommended professional care in approximately 53 of 65 cases. It is important to take the age-old theory of gift exchange (Mauss, 1990(Mauss, [1923]) more seriously with regard to the recent informal care policy. This theory teaches us that family members do not expect something in return and give without asking. In this respect, it does not come as a surprise that we found so many caring family members. Nor is it surprising that we found so many overloaded family members. Overburdening in family relationships is a real risk, particularly due to the nature of these relationships. The boundless moral call of the government for citizens to care for each other and the corresponding change of the meaning of autonomy put even more pressure on these relationships. This pressure leads to exhaustion and overburdening of family relationships.

| D ISCUSS I ON AND CON CLUS I ON
As women still perform a larger share of informal care tasks than men and also receive more care, a moral appeal on informal care seems to affect women the most. It is important that more attention is paid to this issue as it is obvious that gender inequality will increase as a result of the current government policy.
In addition, we conclude it is also important to take the gift exchange theory into account in regard to expectations of informal care by friends and neighbours. We found that care-dependent people find it difficult to ask their social network for (extra) assistance because they value a certain balance between receiving and giving. Care-dependent people feel ashamed and sometimes even guilty when they are unable to reciprocate. They do not want to build up 'a debt' in the relationship. We saw a high degree of reluctance to ask, especially in relationships where reciprocity is the norm. This finding also shows that we cannot see care recipients as only passive and dependent, as was also noted by Lambotte et al. (2018).
Our findings imply that the government needs to consider the limited capacity of social networks and the nature and complexities of social relationships when designing policy plans for informal care.
While policymakers expect people to care for each other even more, our research shows that social professionals came across barriers related to social norms and codes underlying social networks. It seems important that policymakers and professionals take those codes and rules more seriously when developing and implementing informal care policy and that they bear in mind that the capacity of social networks is limited even as the capacity of women who provide the greatest deal of informal care.