Who is responsible for providing care? Investigating the role of care tasks and past experiences in a cross-sectional survey in the Netherlands

To fulfill the needs of chronically ill or elderly persons it is essential that a sufficient number of family, friends or neighbors are willing and able to lend care. From the literature, it is well-known that informal caregiving can be a fulfilling activity, but can nevertheless be burdensome for caregivers, especially when they need to combine their care activities with paid work or family life. Caring can both be emotionally and physically demanding and result in health problems [1‐11]. As caregiving can be straining, it can be questioned whether the general public is willing to provide informal care in the future anticipating the further increased need for informal care. Western countries are confronted with cutbacks in formal health care spending [12]. To reduce the pressure on the health care budget, governments may substitute some parts of formal health care services for informal care. Next to budget cuts, different demographic developments in Western countries, such as the rapid increase of elderly persons or persons with a chronic disease, and developments in the labour market, such as a scarcity of health care personnel, also increase the need for informal care [13, 14]. In many Western countries, informal caregivers already play an important role in health care with an estimated 5 to 30% of the adult population active as informal caregivers in many Western countries [1, 13, 15‐18]. In the Netherlands, about one in three persons of the adult general public lends care to a person needing care from their social network [1]. Around 30% of these caregivers have been providing care for more than three months and for more than eight hours per week. Females and persons aged between 45 to 64 years often are caregivers lending care to parents(−in-law) usually given physical health problems or dementia. Although less prevalent, caregivers also provide care to their partner, child or friends. Caregiving consists of a range of activities, such as emotional support, practical assistance with transport, help with administration and household activities. Caregivers also provide personal or nursing care tasks, but usually these are only provided to close family member, such as a partner or a child [1].

Whether people provide informal care depends on several factors, including the probability of having persons needing care in your network [1]. Moreover, motivations to be socially active are also important, with feelings of obligations, intergenerational affection, filial responsibility and moral duty being especially important for the decision to become an informal caregiver [19‐21]. Studies that focus on the availability of informal caregivers are often quite positive on the number of persons available to provide informal care in the future, especially for elderly persons [14, 22, 23]. Predictions of the ‘potential of informal care’ are usually based on the size of the social network of elderly persons or on demographic figures and expected societal changes, for example the number of women in a country and their employment participation rate [22‐24]. However, these predictions do not take into account whether people are actually willing to lend care. While studies on the actual provision of informal care are numerous, there is much less research on views on whether the government or the social network should provide care [1, 25, 26]. Studies in Europe and the VS have shown that although there seems to be a transition in views on who should provide care from the government to the social network, many people consider mainly the government to be responsible for care provision [20, 27‐29]. These studies usually studied the views of recipients of care [27, 28], current caregivers [26] or concentrated on care to specific social relations. Generally, intergenerational care between (adult) children and their (elderly) parents is the main subject of interest in these studies [27‐34]. Others also studied future caregiving by adult siblings of individuals with mental disabilities [35, 36]. While care for close relatives is quite prevalent, informal care is nevertheless not restricted to this type of care. In this paper, we study which views the general public in the Netherlands hold on the responsibility for care for persons with a need for care in their social network. We will focus on views on different types of care tasks, because characteristics of the care situation, such as the type of care tasks that caregivers will perform, also seem to influence care preferences [1, 25]. We will investigate whether people hold different views on responsibility for care. Central in this study is the role of individual characteristics, more specific the role of own experiences of persons on their views on care. It is known from previous research that people evaluate welfare policies differently according to their past experiences. According to the self-interest argument in welfare state research, vulnerable groups that are more likely to need public services in the future, such as low income groups, tend to prefer more comprehensive state based welfare policies [37]. In the context of policies in health care, previous research indicates that preferences for care are shaped by their past experiences with care needs or health care use [27, 38]. When people perceive health problems themselves, they are less likely to participate in caregiving [39] and more often perceive the government responsible for care provision [27, 29]. In this study, we hypothesize that persons who perceive health problems will address more responsibility to the government than to the general public. We also focus on past experiences with informal care. We expect that past experiences of caregivers may also shape views on who should be responsible for care. We hypothesize that caregivers experiencing less burden will address more responsibility for care to the general public instead of the government.

This paper addressed which views the general public and caregivers in the Netherlands hold on the responsibility for the general public versus the government for people who need care. This paper showed that the majority of the general public in the Netherlands would be willing to provide informal care, and especially support activities, in the future, when necessary. Moreover, our results showed that views on who is responsible for care differed per type of care needed. People perceived that informal caregivers like family, friends or neighbors hold more responsibility than the government when support activities were needed. For personal or nursing care the opposite seems to apply. In general, people stated that the government holds more responsibility for personal or nursing care than the own social network of the care recipients. These findings are in line with other research, indicating that many people are willing to help in the future, and that views on the responsibility for elderly care seems to shift from the government to the own social network of elderly persons [29, 34]. However, this does not necessarily apply to addressing all health needs. Although people are willing to help, many also state that they prefer to be incidentally involved in caregiving especially for assisting non-family members with doing groceries or household tasks [1, 25].

Concerning our hypothesis on the role of past experiences with care, we did not find evidence for our hypothesis that persons with more health needs themselves have more preferences for government care. For our hypothesis that informal care characteristics also shaped views on responsibility for care we did find evidence among caregivers. Caregivers with better caregiving situations in terms of experienced burden addressed more responsibility for care to the general public. Here, also the type of care activities was important. Less burdened caregivers viewed the general public more responsible for especially personal and nursing care. Finally, in line with other studies (e.g., [28, 29, 34, 44], this study showed that views on responsibility for care differed among groups of people. Older persons, males, lower educated persons, persons that have never been married and persons working part-time seem to place more responsibility on the government for providing care to persons with a need for care.

When discussing these results, it should be noted that this study is concerned with views and stated preferences. Hence, whether respondents will actually provide care to their family, friends or neighbors in the future could not be concluded from this study. It is merely an indication of the willingness of lending care to persons in their social network in the future. Previous studies have shown that attitudes towards caring are not necessarily strong predictors of actual provision of care, and that this actual behavior of respondents depends among other things on the need for care and preferences for types of care expressed by family, friends or neighbors and supply factors, such as the availability of formal health care services in a country or country-specific eligibility criteria for access to formal health care, the health of respondents themselves in the future, and cultural factors, such as strength of family ties, motivations to care, and norms on family responsibility [3, 19, 23, 28, 31, 45‐47]. Furthermore, others have pointed to the trade-off persons often need to make when dividing their time between different activities. For example, employment negatively affects both the willingness of people to provide care and the actual provision of informal care [48]. The willingness to provide informal care in the future depends, as this study underlines, also on the intensity of the demands of the caregiving situation. It is well-known from previous studies that current caregivers often experience caregiving as a straining activity [1‐11]. As this study showed, caregivers experiencing strain more often consider the government to be responsible for caregiving. Although we could not directly investigate this, this seems to be an indication that there are also limits in the caregiving tasks that can be handed over to family members and friends. Furthermore, it is important to state that although many respondents felt responsible for caregiving and were willing to provide informal care in the future, it remains uncertain whether these respondents will be willing and able to lend care over longer periods of time.

Given the shift in responsibility for care from the government to the general public in many Western European countries, it is essential that a sufficient number of informal caregivers like family, friends or neighbors are willing and able to lend care. To sufficiently fulfill the needs of elderly persons, chronically ill, or disabled persons it is important for policy makers to realize that people in general are willing to assist their family, friends or neighbors when faced with health care needs, but that this willingness depends on the type of care that is needed. Hence, a shift in responsibility for activities more concerned with supporting family, friends or neighbors with household activities or social support is more in line with public views than relying more on family, friends or neighbors to take up care tasks concerned with nursing or personal care. Also, caregivers currently involved in caregiving that feel burdened by this task more often view personal or nursing care as the responsibility for the government than less burdened caregivers. Hence, a critical view on which care tasks could, partly, be handed over to the public domain is needed by policymakers, also in the light of the high burden already imposed on some caregivers at present, and to preserve the quality of the care that is provided to elderly persons, chronically ill or disabled persons.