The principle of help to self-help in Sweden A study of representations and norms regarding old age and care needs and their moral and ethical implications for care work

ABSTRACT

The purpose of this article is to describe and analyse the principle of help to self-help in care work and the representations of and norms on old age and care needs supporting the principle in relation to moral and ethical aspects. The article is based on the results of a study conducted in a small rural Swedish municipality in 2006–2008 and a study conducted in a big city in 2014 and 2015. The material consists of interviews with first line managers, care workers and care receivers. The results of this article show that the principle of help to self-help in the care of older people exists in both public sector home care in a small municipality and a home care system in a major city with customer choice system. The results also show that representations of and norms on old age and care needs highlight the normative value of help to self-help, which has both ethical and moral dimensions. In the care of older people this is translated into care receivers maintaining their mental and physical strength which challenges the value of care receivers’ self-determination.

KEYWORDS:

• Elderly care
• social welfare
• social pedagogy

Introduction

This article aims to contribute to a better understanding of care work practice by focusing on representations of old age, the norms surrounding care needs among care workers and, particularly the principle of help to self-help. This principle has been found in the care of older people in Sweden (Elmersjö 2014), Denmark (Hansen, Eskelinen and Dahl, 2011) and Norway (Rostgaard 2008), and been part of welfare guiding policies of these countries since the 1980s (Swane 2003). The aim of the principle of help to self-help is to enable care receivers to do as much as they can for themselves, and to provide support rather than help. The principle can be mainly attributed to a social-pedagogic culture that originated in the health field. It has appeared frequently in policy documents in Sweden since the late 1970s (Szebehely 1995, 74–75). At that time, it was believed that the principle of help to self-help would help to enhance the status of care work. In the following text the principle will be referred to as the ‘HSH principle’.

Previous research has shown how representations of old age and care needs affect policy around care (Brodin 2005) and care work, where older people are perceived as a deviant category that needs to be treated in a certain way (Wilinska 2012; Elmersjö 2014). This article treats representations of old age and care needs as a social construction that is maintained through a social and communicative process (Nilsson 2008). Different norms are tied to these representations, and this defines what is to be understood as normal or deviant. The theoretical framework for understanding representations and norms is based on Yeheskel Hasenfeld’s work on human service organizations (Hasenfeld 1983, 2010a, 2010b, 2010c). Care of older people is understood as an example of a human service organization surrounded by moral and ethical assumptions that direct care work in a certain way. Through this understanding, one starting point for this article is that representations of and norms on old age and care needs must contain ethical and moral aspects that serve as a direction for practice. This is elaborated further in the theory section below.

The circumstances surrounding representations of and norms on old age and care needs have changed fairly dramatically in the Nordic countries in recent years (Szebehely and Meagher 2017; Moberg 2017). Since the 1990s, the care of older people has been increasingly characterized by marketization and management theories influenced by industrial and private sectors. In Sweden, marketized governance has had a varied impact in different parts of the country. The privatization of eldercare has been most extensive in and around larger cities and less common in rural municipalities. At the same time, many Swedish municipalities, supported by the law on freedom of choice systems, have introduced customer choice, which allows older people to choose their home care provider (Blomqvist 2004).

A Danish 2010 study found care work characterized by both an HSH orientation and customer-oriented service (Dahl, Eskelinen, and Hansen 2014). It showed how HSH was linked to professional identity and consisted of two modes: one where older people were asked to remain involved in care tasks and one that consisted of systematic training. A Norwegian study found that care workers described HSH as a vital element in good quality care (Rostgaard 2008). That study also showed that care workers expected care receivers to participate in their own care. A critical discussion in the study concluded that this focus on receivers’ own responsibilities and their ability to remain independent can result in a lower level of self-determination.

There is little knowledge about how the HSH principle affects care of older people in rural or urban Sweden in relation to marketization. There is also little knowledge on how the principle relates to representations of and norms on old age and care needs. This article presents new data on the HSH principle and moral and ethical aspects are furthermore discussed. The article is based on the results of a study conducted in a small rural Swedish municipality in 2006–2008 (Elmersjö 2014) and a study conducted in the country’s capital city Stockholm in 2014 and 2015. The material undergirding this effort consists of interviews with first line managers, care workers and care receivers.

Purpose

The purpose of this article is to describe and analyse the HSH principle in care work and the representations of and norms on old age and care needs supporting the principle in relation to moral and ethical aspects.

In the next section, an overview of the HSH principle and representations and norms on old age and care needs is presented in relation to Swedish policy documents and legal strictures and regulations.

The needs of care receivers and help to self-help in sweden

In Sweden, different representations of and norms concerning old age and care needs have been present in the care of older people over time (Hellström Muhli 2003). In the 1950s and 1960s, old age was seen as a sickness and something to treat and to some extent cure. At this time, care workers in Sweden were expected to be experts on the needs of receivers and care work was conducted around care workers’ notions of what was in the best interest of care receiver (Evertsson and Sauer 2007). In this sense, the HSH principle can be seen as an example of an intervention where care workers are given an educational task.

In the 1970s, the focus shifted to more service-minded care and care receivers were to be treated as if their lives should consist of more than being old (Hellström Muhli 2003). Meaningful activities, social integration, variation in everyday life and security were described as important factors in good quality life in old age. Older people in general were also regarded as vital and active citizens whose experiences were worth learning from (Jönson 2001).

In the 1980s, the attitude to older people changed again (Brodin 2005). Older people’s needs were now regarded as something created by society and older people’s own prejudices. Meanwhile, welfare services focused on enabling older people to live independently in their own homes (Hellström Muhli 2003; Hjalmarson and Wånell 2013). In the 1990s, the ‘Ädel’ [literally: noble] reform was introduced in Sweden and the care of older people was now guided by concepts of self-determination, integrity, security, and freedom of choice (Proposition [1987] 1988:176; Alaby 1992).

While the Ädel reform was being implemented, new governance and management forms associated with New Public Management were also being introduced (Blomqvist 2004). The main aim was that these new management and steering arrangements should lead to a more efficient use of resources by the municipalities. It was assumed that making older people customers would provide them with greater legal certainty. The customer concept was reminiscent of care with an emphasis on service, as in the 1970s. At the same time, however, the doctrine of help to self-help was strengthened (Swane 2003). HSH principle takes a clear point of departure in older people’s responsibility for maintaining their own functions and health and is different from the service idea that ‘the customer is always right‘. Throughout the 1990s both ideologies influenced care of older people, and contradictory views on older people and their care were forced to coexist, as shown in Dahl, Eskelinen, and Hansen (2014).

The 2000s saw new principles introduced into the care of older people in Sweden: stressing integrity, self-determination and dignity (Proposition [1997] 1998:113: 1). Concurrent with these principles, the HSH principle was reformulated, and the focus shifted towards societal norms and values that saw older people as more passive and diminished their level of self-determination. The competence requirements of care workers shifted from help, and a focus on support emerged (Elmersjö 2014, 20–23; SOSFS 2011:12) supported by the Social Services Act, which states that care work should consider ‘the person’s responsibility for his and others’ social situation, focusing on developing individuals’ and groups ‘own resources [auth. translation]’ (SFS 2001:453). One crucial point here is that the focus on support instead of help can be a way of shifting responsibility for meeting needs to the care receiver. However, it is important to note that it can also be a way to improve physical health, and its importance increases with age (Cederbom 2014). Physical activity appears to contribute to increased functional capacity and health, which means that there are gains associated with preventive work aimed at older people. In line with this, previous research has shown that people aged between seventy-seven and ninety-two want to stay healthy, independent and active (Gunnarsson 2009; 2011).

New national values for eldercare were introduced in Sweden in 2011 similar to those presented thirty years ago: dignity, well-being, integrity, self-determination, participation, and individual care (Social Services Act 2001:453; Norström and Thunved 2011). The bill Dignity in the care of older people (Proposition [2009] 2010:116), which formed the basis for these national values, also includes the aim that care receivers should be able to decide when and how support and assistance should be provided inside the home. In 2017, new national guidelines were again introduced on quality in the care of older people (SOU 2017:21). These guidelines could be interpreted as supporting the HSH principle, but at the same time they conclude that care should be based on care receiver’s right to self-determination.

Care work in human service organizations

The analysis conducted in this article is based on a theoretical concept of care work that uses Yeheskel Hasenfeld’s (1983, 2010a, 2010b, 2010c) theory of human service organizations. The contribution of this theoretical work enables us to illuminate moral and ethical aspects of the HSH principle based on representations of and norms on old age and care needs.

Human service organizations can be distinguished from other types of human organization by their primary focus on the relationship with the client (Hasenfeld 1983, 2010a, 21–24). This relationship is characterized by the client being a receiver of the organization’s services, either voluntarily or unwillingly. Organizations tend to work in a way that is legitimized by their institutional environment. Different professions can argue the benefits of different ways of working in order to protect and enhance their own status but, at least in a Swedish context, require state approval to implement major changes. As shown above, the HSH principle has a long tradition in Sweden. The interventional core of the principle, however, means that results will vary from person to person and makes it difficult to measure outcomes (cf. Dahl, Eskelinen, and Hansen 2014; cf. Hasenfeld 2010a).

Providers of care for older people in their own homes or in residential care are examples of human service organizations. As in all human service organizations, care receivers will be required to cooperate, adapt to the organizational policies, in part or fully, and comply with prescribed behaviors and goals (cf. Hasenfeld 1983, 2010c, 417–419). Accordingly, care receivers will be judged differently depending on the representations of and norms on old age and care needs that are dominant within the organization.

The client, patient or care receiver is the organization’s raw material, and will be handled, shaped, and changed based on the social values of the organization (Hasenfeld 1983). The term raw material is used as a metaphor to clarify the aim, which is to change or transform personal attributes according to the dominant representations and norms within the organization (Hasenfeld 2010a, 11–12). Sick people should be well, uneducated people should be educated, unemployed people should be employed, and so on. A transformative process will contribute to the desired change in people’s characteristics. In the case of care work, representations of and norms on old age and care needs will be the foundation for such transformations. One important point of departure is Dahl, Eskelinen, and Hansen (2011, 2014) contribution on the coexisting principles of help to self-help and customer-oriented service for understanding of representations, norms, moral and ethics in care of older people.

Following Hasenfeld’s theory of human service organization, care workers must create an understanding of care receivers’ needs and use different ethical and moral assumptions in the process (cf. Hasenfeld 2010b, 99–101). According to the Swedish Social Services Act, care work should focus on receivers living a dignified life characterized by well-being (chapter 5, §4 of the SFS 2001:453). To achieve this, the care should focus on respecting and protecting the receiver’s right to privacy and physical integrity, self-determination, participation and personalized care. The national quality plan for the care of older people states that care work should be designed according to the situation of the care receiver (SOU 2017:21). Jönson and Harnett (2015) propose a new theoretical framework based on this principle for analysing receivers’ living conditions. The care of older people is compared to people’s living conditions in wider society. This way of understanding care also makes the obstacles to, restrictions on and alternative ways of organizing care visible when analysing how care work challenges care receivers’ opportunities for self-determination (Elmersjö 2016). Following Jönson and Harnett’s (2015) elaboration on equal opportunities and equal living conditions care receivers’ self-determination is significant when it comes to the ability of care receivers to maintain and control their living conditions and their daily lives.

Ethical assumptions naturally imply moral assumptions. Following Hasenfeld’s theory, one moral assumption in the care of older people concerns the receiver’s social value (Hasenfeld 2010a, 2010b, 99–101). A receiver who is perceived as having a high social value will receive higher quality care. Similarly, a care receiver who is perceived as having a low social value will receive fewer resources. Another moral question is whether the receiver can be judged to have any moral responsibility for his or her problems. Care receivers who are perceived as morally responsible can be regarded as deviants. Those who, by contrast, are interpreted as not responsible could instead be considered victims. There is also a moral assumption concerning the receiver’s ability to change and improve him or herself. It is through these moral assumptions that the care worker’s responsibility for the care receivers’ destiny is set. One consequence might be that professionals in human service organizations might refuse to take responsibility for receivers who are deemed to be there involuntarily or to be unable to change. A further moral question arises in relation to desired results. These will affect the work, and the receiver’s ability to influence his or her care. A final question is whether the receiver should be treated as a subject or an object (Hasenfeld 2010b, 99–101). Those who are treated as subjects are judged to be morally capable of making decisions themselves and being involved in the process of obtaining the desired needs. Those who are treated as objects are subordinated to the will of the professionals.

Recent, fairly dramatic changes in the provision of human services in Sweden have led to clients, patients and care receivers becoming customers as part of a marketization (Erlandsson et al. 2013). Through these changes, care receivers are supposed to enjoy a wider range of opportunities and rights and a greater degree of self-determination. It is shown above that representations of and norms concerning old age and care needs change over time, often linked to political changes. To understand the specificity of care work it is important to recognize which representations of and norms on old age and care needs influence daily care work and its moral and ethical aspects.

Design and methods

This section presents the material and data from two separate field studies.

The empirical material from the first study was collected in one of the smaller Swedish municipalities between 2006 and 2007. The material consists of individual interviews with first line managers, focus group interviews with care workers and individual interviews with care receivers. During this period, the first line managers were also responsible for assistance assessments in the municipality. In total, the study included ninety-three respondents: nine interviews with first line managers, thirty-seven interviews with care receivers and nine focus group interviews with care workers. The care receivers who were interviewed either lived in a residential home or were receiving home-based care. The quotes in this article come from care receivers receiving home care but the results of the study are arguable for representative care receivers both living in their own homes and in a residential home. The material also includes documents and observations that validate and complement the empirical material.

The second research project on a system of market-oriented home care was a qualitative study of home care services with user choice model in the city of Stockholm conducted in 2014 and 2015. The purpose of the project was to scale-up the results from the study on public care of older people in a small municipality where there were no private sector options. The care of older people in Stockholm is characterized by market-steering principles that could be said to encourage more service-oriented care. Older people can choose their care provider through a customer-choice model that is publicly financed, and publicly funded providers and private sector providers (profit making and non-profit) compete to deliver care.

The study contained eleven individual interviews with first line managers in private for-profit or non-profit, and publicly funded providers of home care. The managers were contacted first by mail and then by telephone. Half of them agreed to participate in the study. Those who declined did so based on their involvement in other time-consuming tasks such as reorganizations, or the fact that the organization would soon cease to exist.

During the interview, a conversation map was used that included the concepts of knowledge, work tasks, treatment, needs and competition. These concepts were intended to guide the conversation on to questions about what the managers believed care workers are supposed to do at work as well as questions about education, how to define care work, how staff should respond to care receivers, the care receivers’ needs, the needs of care workers and the first line managers’ broader understanding of home care with a user choice model.

The material consists of recorded and fully transcribed interviews. The interviews from both studies were coded into three themes: expressions of the HSH principle; representations of and norms regarding old age; and representations of and norms regarding care needs. The themes were then analysed using the theoretical framework on care work in human service organizations.

Both studies were guided by the ethical guidelines formulated by the Swedish Research Council (Vetenskapsrådet 2002). All the interviews were voluntary. Respondents were informed about the purpose of the study and were able to end their participation at any time. The first study consisted of interviews with care receivers. The age of the receivers varied from just after retirement to over ninety years. There were also variations in care levels from just having an alert alarm provided in their own homes to comprehensive nursing, although the former was unusual. I have chosen not to reveal information about age, gender, type of housing or type of care because comparisons between these factors are not central to the argument. Nor do I want to invite comparisons between age and effort. A relatively recently retired person with an alert alarm would not necessarily be a healthy younger elder. He or she has been given an alarm, but other care needs may also exist. Age says nothing about help orientation. A lower age does not automatically mean that a person is healthy and vital or possesses other characteristics or conditions that make life easier. Conversely, a person of great age can experience life as easier than might be assumed.

The care receivers should be treated as being in a vulnerable category but there are of course variations at the individual level. When interviewing first line managers, care workers and care receivers, there is a risk that privacy is threatened. I have handled details that could reveal private matters with great caution (Allmark et al. 2009). Only care receivers who could be considered able to communicate and to have fully understood the terms of their contribution were made part of the study. Decisions about participation were primarily the care receivers’, but relatives and care staff also had an opportunity to raise doubts about participation. It was also the researcher’s responsibility to consider circumstances, such as sickness, which might be important in any decision about participation. When it comes to including older people, there are several ethical considerations. That a care receiver has volunteered is of course one of the most important, but the researcher also has a responsibility to consider the dependency of the care receiver in a human service organization. The issue of power relations should be given due consideration when involving care receivers in a study (Allmark et al. 2009). The care receiver’s dependency can come into play when the researcher asks about participation. Other factors, such as strength, communicative ability or possible diseases, may need to be discussed with care workers, especially when care receivers themselves do not always choose to highlight these conditions.

Participation in this sort of study can also be an opportunity for vulnerable groups to raise their voices and take the opportunity to both complain and provide positive feedback. Most of the care receivers were pleased to have an opportunity to talk about their care and their everyday lives. This could also be explained by their life situation, which often involved loneliness. However, given the importance of providing information about the aims of the study, the study itself had the capacity to highlight this loneliness.

Results

The HSH principle in public home care in a small municipality

The small municipality consists of approximately 20 000 inhabitants. At the time of the study it provided publicly funded home care and residential care, and there were no private sector providers (Elmersjö 2014, 24–27).

The study of care work in the municipality showed that the first line managers’ and the care workers’ representations of old age and care needs reflected a certain understanding of today’s care receivers (Elmersjö 2014, 91–134). First line managers and care workers believed that the majority of care receivers are characterized by qualities such as gratitude, passivity and loneliness. These qualities were understood as a problem and a threat to care receivers’ well-being. First line managers and care workers also believed that care receivers lacked knowledge of the importance of continuing to do as much as possible for themselves in order to maintain mental and physical strength (Elmersjö 2014). First line managers and care workers further explained that they could not fully trust the care receivers’ assessments of their own needs, since they lacked the necessary knowledge. This meant that they were the primary decision-makers in terms of what needs to meet, which in turn significantly affected the nature and disposition of the work.

HSH was a key principle in the municipality, emphasizing the need to keep care receivers active in their everyday lives (Elmersjö 2014, 91–134). Both first line managers and care workers described teaching care receivers the importance of doing as much as possible themselves as a vital tool. First line managers and care workers stated that many care receivers wanted help with everyday tasks that they believed receivers could manage themselves.

Managers and care workers used different strategies to assess each care receiver’s ‘genuine needs’ (Elmersjö 2014, 164). One prominent strategy, interpreted in the analysis as ‘the strategy of skepticism’, begins at the assistance assessment. The quote below demonstrates the strategy of skepticism, in which the HSH principle comes through clearly:

You have a personal responsibility, regardless of age. Take housekeeping, for example, it is not just that you want the cleaning done. Instead, I will investigate the possibility that the person can dust, for example. Often they may not be able to vacuum or to mop the floor, but they may be able to dust. I then try to get the care workers to do it together with the care receiver. But at the same time some care receivers think it is nice to get the cleaning done by someone else even though they can do it themselves. You must find the right balance. We should never take away someone else’s capability, even though they believe it to be more comfortable. And people at this stage of life have a responsibility to be honest about what they are capable of doing [First line managers Birgitta (in Elmersjö 2014, 109)].

Other people in society would not normally be the object of this kind of intervention. When someone pays for home cleaning, their ability to clean themselves is usually not questioned. The care receivers also pay for their care, but they are still questioned and measured. Following Jönson and Harnett (2015) reasoning on equal opportunities, the care receivers are denied the possibility of living normally as an ordinary citizen. This is also understood as an objectification of the care receivers, since they are not regarded as capable subjects (Hasenfeld 2010c). Gunnarssons’ (2009, 2011) contribution on older people aged between seventy-seven and ninety-two and their will to stay healthy, independent and active contradicts first line managers’ and care workers’ representations. The strategy of skepticism is followed up with HSH:

Anna-Lena:

Yes, it is very important for the care receivers that they are capable to some extent, that they maintain their physical ability and that their self-esteem is maintained. But some of the care receivers believe that because they are old they are entitled to help. And that we are supposed to help them.

Sara:

Yes, that is how it is and then they cannot even lift a finger.

Max:

Yes, that is how it is.

Anna-Lena:

And then you often have to bite your lip and say that this is for your own good.

Sara:

But then, it is good for us if they can maintain their functions as long as possible. [Part of discussion with care workers in 2006 (Elmersjö 2014, 124)]

The care workers reflect the first line managers’ skepticism and question the care receivers’ willingness and ability (Elmersjö 2014, 125–126). They have also taken on the role of ‘knowing what is best for the care receiver’, and this knowledge trumps the care receiver’s own wishes, depending on what they want. Using Hasenfelds (2010b) terms the moral work is possible because of care workers’ possibility to shape the care relation.

In the analysis, the HSH principle in the small municipality was interpreted as both practice (something you do) and a representation of old age and needs (how to understand what you do) (Elmersjö 2014, 164). Based on the idea that ‘care receivers do not know what is good for them’, the care work is designed and carried out at the expense of receiver’s self-determination and their ability to affect the content of the care they receive which challenge the fulfillment of the national values for eldercare (SOU 2017:21).

In their study of help to self-help in Denmark, Hansen, Eskelinen and Dahl (2011) emphasize the importance of building a relationship. This is described as important in the small municipality as well, since many care receivers do not expect to have to perform tasks themselves and sometimes get angry or frustrated (Elmersjö 2014, 135–160). When interviewing care receivers, it becomes clear that they have different expectations of care work and want to have an influence over its content. According to one receiver:

They [the care staff] are not allowed to do anything anymore. – Ok, for example? [intervention by the interviewer] – Bake a cake [quick response], mop the floor. And I’m allergic, I’m asthmatic, now it’s not so bad, but it has been worse. But they cannot do that, and I think it is very stupid. [Valborg, care receiver (Elmersjö 2014, 146)]

When another care receiver, Gittan, asked for her bath to be cleaned, her care worker responded that it was not included in their duties (Elmersjö 2014, 151). She then decided to remove the bath and Gittan said that she had no choice in the matter – what care receivers cannot handle themselves, such as a garden, a house or a bath, they must simply let go. Gittan stated that a bath would be good to have and that care receivers should have the ability to decide what they should be helped with. But Gittan also reflected on her current situation in relation to how it was before and concluded that when she did not get any help at all, that was very difficult. In relation to how it was before or how it might be if she had no help at all, her current situation was still positive.

As the above examples show, many receivers want help with maintaining their home. Care workers, however, consider carrying out such tasks to be old-fashioned and want to focus on social needs and getting receivers to do as much as possible for themselves (Elmersjö 2014, 126–128). The quotes also show how receivers’ lives differ from people’s lives in general (Jönson and Harnett 2015). When they become a care receiver their living conditions change. This shows how care receivers’ level of self-determination, dignity and integrity is challenged. This is also connected to representations of old age and care needs in society in relation to other people’s needs at different ages (Elmersjö 2016). The ability to affect care has been shown to have a major impact on experience of the quality of care (Szebehely 2006; Elmersjö 2014, 157–160). For receivers in the municipality, care work is about maintaining their homes and preventing them from falling into decay.

In care work in the small municipality, the HSH principle embodies values such as autonomy and activity (Elmersjö 2014, 161–176). This interpretation makes help to self-help something more than a variation of care work – it also includes representations of old age and care needs. In the small municipality, representations of old age and care needs are based on a certain idea of care receivers of today. Leaning on Hasenfelds (2010b, 2010c, 406–408) conceptualisation of moral work these representations intervene and become the moral foundation for deciding which needs should be met. The customer orientation is however weak in the small municipality since first line managers’ and care workers’ idea of what is for the best for receivers’ takes precedence.

The HSH principle in home care in Stockholm

The second study was conducted in Stockholm, a city of nearly 1 million inhabitants. Since the 1990s, Stockholm’s eldercare has been characterized by a market-oriented regime in which public and private sector providers compete for customers. The customer choice system means that after an initial needs assessment, the care receiver can choose an authorized provider to provide their home care.

First line managers in Stockholm believe that the development of a home care system with a user choice model has increased the opportunities for receivers to affect their care and increased the level of self-determination. One first line manager thinks back and ponder on care work some years ago and care work today:

It was the care staff that ruled the customer’s life [some years ago]. Customers who wanted wine did not get it if it happened to be a teetotaler who was providing the help. Today it does not matter if you are a teetotaler or a Muslim, if the customer wants wine you go and buy it. In the old days, care workers ruled care receivers’ lives, even in their own home. That is not allowed today. If it does occur, someone will hear about it immediately and it will end. So, there is a huge difference. [First line manager]

A home care system with customer choice automatically emphasizes receivers’ right to influence their care from a customer perspective (Erlandsson et al. 2013). In this way, the ability to live like ‘ordinary citizens’ increases (Jönson and Harnett 2015). Nonetheless, the HSH principle can challenge the idea of customers’ rights if it conflicts with a care receiver’s expectations. The marked-based model should, however, strengthen the position of care receivers, who should be able to complain and to choose another provider.

In a home care system with user choice model, there is an understanding of the positive meaning of self-help among both public and private sector providers. One first line manager said that care workers should not overdo it: ‘Care workers do not snap buttons: if the elder can handle it, she should do it’. This manager defined help to self-help as taking time to let care receivers do things themselves even if this takes longer. Another manager said that she did not think of it as a specific approach: for her, help to self-help had always been at the core of care work.

The basic idea that emerged from the discussion of help to self-help was that care receivers should do as much as they can for themselves. Care is about focusing on the healthy parts and being an extended arm. One first line manager explained it like this:

My ideal scenario is that you do things together. I can understand that if you have heart failure and shortness of breath then you must do things based on what you can manage but you may be able to do things seated. I often talk about it in different meetings, that we should not do things for the care receivers. We will not make a sandwich, we will present things and the person may sit and make the sandwich herself and be involved because then there will be as much butter as you want. Because when I spread it, it will be the way I like the sandwich and not the way you want it. There are many such details. In the past, they talked a lot about having your hands behind your back. I think the staff are solid and have a long history and are good at this. And we talk a lot about this, what an activity is. Activity is everything I do in a day. An activity does not have to be to go out somewhere and be entertained. It may just be that I am involved in my day. Every little moment is an activity. [First line manager]

This way of making care receivers participate in daily tasks is also recognized in the Danish study on care work (Dahl, Eskelinen, and Hansen 2011, 2014). As in the small Swedish municipality, it is not certain that the HSH principle corresponds to receivers’ expectation of care. Furthermore, relatives can also have a different view of what the care should consist of:

You should know that this is very difficult; because care receivers pay for their home care and they think they are paying a lot of money. So, when the staff ask them to do some things, it can feel like they are doing things for the staff. But that is not what it is about. If presented in the right way… I have often experienced as a first line manager when you go on home visits and the daughter says: ‘mother must peel the potatoes, but she has been granted help with cooking’. And then I turn to the lady and say: ‘but how great that you can peel the potatoes’. Then it all turns on what her mother is able to do. It is important to think about how to present things. It is great that your mum can peel potatoes. Then they are involved in the cooking and it will be a much better day. [First line manager]

The quote indicates that there are different interpretations of what assessed care really means. The family interprets the decision on cooking as if the care workers will prepare meals for the care receiver, while the care workers interpret the decision as cooking with the receiver. Following Hasenfeld (2010a) reinterpretation is only possible if there is freedom to discuss and reformulate assessed needs. If not, care receivers are prevented from affecting their care from a customer perspective. Receivers can only expect a certain form of care but nonetheless have the responsibility to make the right choice (cf. Erlandsson et al. 2013).

In the home care system in Stockholm, there are challenges in fulfilling the HSH principle. One first line manager put it like this:

You get an hour or 20 minutes to shower in the morning. Yes, and in those 20 minutes, can you really help to self-help? I may be able to stand there next to Charlie while he gets out of bed and ‘sit on my hands’ waiting for him to get into the shower. Maybe this is just what he needs to do to have a meaningful day and feel that he is involved. And there I really get an understanding of sustainability in daily life… care receivers who are given more help become passive.

This quote shows the care workers’ thinking on what happens if care receivers are given too much help – they become passive. This representation of old age was also present in the study of the small municipality. This separates care receivers from the ordinary citizen, making the former a potential problem (Elmersjö 2014, 168), and deprives them of the same living conditions as the general population enjoys (Jönson and Harnett 2015). However, the HSH principle has limitations with regard to the care receivers’ opportunities to affect their care. If a care receiver, due to various moral assumptions, is assumed to be unable to decide what is in his or her own best interests, then opportunities to affect care will be reduced (cf. Hasenfeld 2010b).

Those first line managers who chose not to speak directly in favour of or against the HSH principle often took the position that care workers are guests in the homes of the care receivers. In the discussion on home care services, the argument emerged that receivers have the right to get the help they pay for, and therefore that care workers should help in whatever way the receiver wish. One manager even described help to self-help as an outdated approach:

Yes, I remember the time when you had to have your hands behind your back and watch some poor old person button his shirt himself. I do not believe that it is a good idea. I believe in a hybrid system where I help the care receiver with her shoes while the care receiver tries to button her blouse. I do not really understand the idea, not when you are old. Maybe when you are a child or young or have a disability, then you learn to tie your shoelaces. [First line managers]

As this quote shows, it is mainly the person’s age that is used as an argument to question help to self-help. The first line manager’s comparison with disability care may involve an interpretation of care receivers’ right to live as independently as they could in other ages. The quote also involves an understanding of the HSH principle as something outdated but not entirely wrong. Some things care receivers are still obliged to do, such as the buttons on their shirt while the care worker helps with their shoes. Helping without expecting something in return does not seem to be an option.

In Stockholm, the HSH principle is regarded as a traditional principle which can be interpreted as withholding certain representations on care needs in old age. According to Hasenfeld (2010b) moral assumptions are often connected to these sorts of representations. The care to be provided and the way this care is performed must be sanctioned by legitimate values. Even though the care receivers are considered customers, the HSH principle denies receivers the possibility of living like other people in society (cf. Hasenfeld 2010a; Jönson and Harnett 2015).

Concluding remarks

The results indicated above show that the HSH principle in the care of older people exists in both public sector home care in a small municipality and a home care system with user choice model in a major city. In Denmark, HSH has been found to take two forms: the first concerning care receivers’ participation in everyday tasks and the second systematic training (Dahl, Eskelinen, and Hansen 2014). This article has shown that Swedish HSH municipally organized care strongly resembles the first form. As in the study in Denmark, there is reason to conclude and actively take into consideration that the HSH principle is connected to care workers’ professional identity.

The fact that the HSH principle and the customer-oriented service function as parallel approaches in the home care systems provided in urban parts of Sweden and in Denmark is perhaps not surprising. The HSH principle focuses on the preservation of independence, something that fits well with the core values of marketization (cf. Erlandsson et al. 2013), as well as the Swedish national values on the care of older people of 2011 and the Social Services Act of 2001, which emphasize a focus on the individual’s own resources. It seems like the HSH principle interacts with and is supported by marketization as well as representations of and norms on old age and care needs. Accordingly, care work is both concentrated and fragmented, and the customer choice model compels older people take responsibility for choosing the right format of care for their needs. This study shows that once the choice is made, care receivers can still be the target of individualized interventions that aim to make them participate in and become co-responsible in the conduct and organization of their own care. The idea of customer orientation is by this eroded in the sense om self-determination – you can choose your care but then the liberty of choice is limited.

It is also shown that the HSH principle is connected to specific representations of and norms on old age and care needs. Old age seems to come with certain obligations, such as staying independent, active and healthy. In the care of older people this is translated into care receivers maintaining their mental and physical strength. Qualities such as gratitude, passivity and loneliness are perceived as problems. These representations highlight the normative value of the HSH principle, which has both ethical and moral dimensions. The ethical aspect consists of a professional idea of taking responsibility for the care receiver’s own good, even though the care receiver does not agree. Care receivers who are regarded by their first line managers and care workers as uninformed about the importance of staying active, or ‘not knowing what is good for them’, are morally objectified (Hasenfeld 2010b) and consider as not able to fulfill an individual responsibility. The Social Services Act of 2001 specifies that social work should take into account ‘the person’s responsibility’ [auth. translation] (SFS 2001:453, Chapter 1, Section 1). The HSH principle, however, conditions the possibility for care receivers to assume individual responsibility and challenges the value of self-determination. At the same time, the HSH principle acknowledges the value of individual responsibility and self-determination in those cases where care receivers are regarded as morally capable.

According to the HSH principle, care receivers are not given the opportunity to live like other people in society. Drawing on Jönson and Harnett (2015) study this raises fundamental questions about equal rights throughout life, or, in other terms age-independent equality. There is clearly a major need for further studies of care of older people in relation to the HSH principle in order to explore threshold care conditions and provision choices where age (directly or indirectly) serves as a foundation for ethical considerations and moral obligations.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This work was supported by the research programme ‘Individualised care and universal welfare: Dilemmas in an era of marketisation‘ located at the department of social work Stockholm University and at the department of social work Lund University, Sweden. The program is funded by Forte [Dnr 2013–02296];Forskningsrådet om Hälsa, Arbetsliv och Välfärd.