Autonomy, Choice and Control for Older Users of Home Care Services: Current Developments in Swedish Eldercare

Abstract

In Sweden, a policy shift towards more individualized eldercare, with an emphasis on consumer choice, has taken place. The aim of this study was to analyze the processes and practices of individualized eldercare, focusing on preconditions for older peoples’ choice and control. Data consist of qualitative interviews with users of home care services (n – 12) and staff (n – 12) and participant observations (n – 7) of meetings between staff and older people. The choice and control available to older users emerged as decisions about ‘what’ care and services, ‘who’ should provide the care and services, and ‘how’ the care and services should be performed. Three approaches to enable older people choice and control over their home care services were revealed: test and revise, services elaborated in close collaboration between users, care managers and home care staff; choices in the moment, users could choose services at each occasion; and quality improvement through competition, competing providers develop attractive services. The findings could guide policy makers in combining the strengths of these approaches to enable older people in need of support to become co-producers in designing, managing, as well as consuming, care and services. Future quantitative research is needed to achieve generalizable knowledge about the strengths and weaknesses of different ways to organize eldercare services.

Keywords:

• Eldercare
• choice and control
• marketization
• Sweden
• qualitative research

Introduction

This article provides a picture of current professional practices in Swedish eldercare, focusing on preconditions for older peoples’ choice and control. Sweden is generally described as a universal welfare state, with systems of benefits and services, publicly financed through the tax system, corresponding to the lifetime needs of its citizens (Esping-Andersen, 1990). The policy goals for eldercare have traditionally emphasized universalism [the same services directed toward and used by all citizens regardless of socio-economic status, or individual preferences] and extensive coverage (Sipilä, 1997; Szebehely & Trydegård, 2012). However, a policy shift towards more individualized care and services has taken place, with an emphasis on consumer choice (Government Bills, 2008/09: 29; 2009/10:116; Szebehely & Trydegård, 2012). Similar to the policy agenda of ‘personalization’ or personal budgets, in the United Kingdom (UK) and consumer directed care in the United States (US) (Lymbery, 2014; Ottmann, Allen, & Feldman, 2013; Wiener et al., 2007), the intention is to give older people ‘more choice and control and a more customized service, regardless of what service or form of support they receive, and however it is provided’ (Pearson, Ridley, & Hunter, 2014, p. 11). Although its roots can be traced back to disability activism in the 1970s and the struggle for independent living, individualization in today’s eldercare has moved away from its radical roots and has been promoted as part of a more consumerist model.

The Swedish Eldercare Context

Since the 1990s, Swedish legislation has allowed municipalities to contract private providers of publicly funded eldercare (Szebehely & Trydegård, 2012). In 2008, the Act on Free Choice Systems (Government Bill, 2008/09: 29) presented possibilities for municipalities to introduce opportunities for older people to choose between various authorized private and public providers of home care services. However, as opposed to personal budgets in the UK and consumer directed care in the US, Swedish Free Choice Systems do not give older service users access to cash payments. Instead, the local municipal authorities make agreements with a varying number of public and/or private care and service providing agencies that older people can choose between.

Older peoples’ right to eldercare, is established in legislation at the national level, through the Social Services Act (2001:453). The policy is to offer home care services that contribute to and encourage older people to stay in their own homes for as long as possible (Dunér & Nordström, 2010; Szebehely & Trydegård, 2012). Based on national policy and legislation, local authorities in 290 self-governing municipalities are responsible for the realization of individualized eldercare and the concrete organization of eldercare at the local level. As of April 2016, 176 municipalities have introduced, or are planning to introduce Free Choice Systems (SALAR, n.d.). In municipalities that have not introduced Free Choice Systems, older people get their home care services from a public (municipal) agency. Regardless of how municipalities have organized their eldercare, discretion is delegated to care managers by the municipal board of social welfare, and they are expected to make assessments and decisions according to more or less formalized local guidelines (Dunér & Nordström, 2006; Dunér & Wolmesjö, 2015). If eligibility criteria are met, the care manager determines the type (home care or residential care) and amount (of different services or time allocated) of social care that can be granted (Dunér & Nordström, 2006, 2010).

Literature Review

Studies including the perspective of older people have shown that when becoming users of home care services, people want continued opportunities to control their everyday life (Dunér & Nordström, 2005; Glendinning, 2008; Gunnarsson, 2009; Vernon & Qureshi, 2000). Glendinning (2008) showed that older users’ choices and decisions are constantly renegotiated due to changing circumstances and priorities. Choosing care services may be described as a two-step process, first involving the choice to use care services and secondly to choose provider of the services (Dixon, Robertson & Bal, 2010; Fotaki et al., 2005; Puthenparambil & Kröger, 2016). Many older service users have reported good satisfaction with consumer directed care in the US and personal budgets in the UK (Newbronner et al., 2014; Ottmann et al., 2013; Wiener et al., 2007). Some studies have shown that older people prefer fewer options, and tend to make active choices to a lesser extent than younger people (Mikels, Reed, & Simon, 2009; Reed, Mikels, & Simon, 2008; Rodrigues & Glendinning, 2015). Yet, it is important to recognize the differences in preferences among older people (Kane & Kane, 2001; Rodrigues & Glendinning, 2015; Sciegaj, Capitman, & Kyriacou, 2004). Previous studies have also shown that some older people, especially those with the highest care needs, have limited abilities to act as rational consumers (Glendinning, 2008; Lymbery, 2014; Meinow, Parker, & Torslund, 2011). In such situations, support with decision-making may be required to allow users continued opportunities for choice and control (Glendinning, 2008; Mahoney et al., 2002; Newbronner et al., 2014). Many users of home care services, within the Swedish Free Choice System, did not find the received information a sufficient basis for their choice of provider (Hjalmarsson & Norman, 2004; National Board of Health and Welfare, 2015). An analysis of the information from providers showed that it provided little guidance for users to make informed choices (Moberg, Blomqvist & Winblad, 2016). Many older people do not see the value of choosing between different, more or less anonymous, service providing agencies and very few change their initial choice of provider of eldercare (Edebalk & Svensson, 2010; National Board of Health and Welfare, 2015; Vamstad, 2016). However, other findings have suggested that older people, especially those with higher income and educational levels, appreciate the opportunity to choose the provider of their care and services (Hjalmarsson & Norman, 2004; Vamstad, 2016). In a recent study of older users of Swedish home care services with Free Choice Systems, 13% claimed that they did not know that they could choose their provider, and almost 25% reported that the municipal authorities in fact had made the choice (Vamstad, 2016).

From a staff perspective, studies of the Swedish Free Choice Systems have shown that care managers are often trapped between expectations from older people to help them choose the best provider for their home care and services, and their obligation to be impartial to the providers (Edebalk & Svensson, 2005; National Board of Health and Welfare, 2015). Moreover, care managers perceived older people as more negative towards choosing a provider than did the older users themselves (Hjalmarsson & Norman, 2004). However, as the authors were not able to interview older people with severe dementia or complex care needs, older people interviewed in the study were not representative of the broader group of older home care users (Hjalmarsson & Norman, 2004).

Proponents of consumer choice and competition between providers in eldercare, in the Nordic countries as well as in other welfare states, have stressed the potential to empower older users and increase the quality of care. While others have raised concerns about the risks of eroding the principle of universalism and of increasing inequality, as users with high levels of income or education may benefit the most from consumer choice (Clarke, 2006; 2007; Meagher & Szebehely, 2013; Ministry of Health and Social Affairs, 2007; Rodrigues & Glendinning, 2015; Rostgaard, 2006). The above literature reviewed for the purpose of this study does not give full support to any of these positions. As some authors have pointed out, increased choice and control for older service users may or may not involve consumer choice and the marketization of social care, depending on different roles for the public sector, the private for-profit and non-profit sector (Clarke, 2006; Ottmann et al., 2013; Rostgaard, 2006). However, no previous study have investigated the preconditions for older people’s choice and control, from the perspectives of both staff and users of home care services, in municipalities with as well as without Free Choice Systems. Therefore, the overall aim of the present study was to analyze the processes and practices of individualized eldercare in Sweden at the local municipal level, with a focus on the preconditions for older peoples’ choice and control.

Methods

The findings reported here form part of a case study focusing on autonomy, choice, and control for older users of home care services in Sweden. The research was conducted in three municipal eldercare authorities in southwestern Sweden. The participating municipalities were strategically selected to reflect diverse present ways of organizing home care services in Sweden. In the ‘traditional municipality’, home care services are both publicly funded and provided. In the ‘provider-choice municipality’, home care services are publicly funded but older users can choose between seven to eight various providers, both private and public.¹ The home care services in the ‘service-choice municipality’ are publicly funded and provided, but allow older people to choose what services they wanted performed. An outline of the similarities and differences between the participating municipalities’ various ways to organize their home care services is presented in Table 1.

Table 1. Outline of the similarities and differences between the municipalities.

Traditional municipality	Provider-choice municipality	Service-choice municipality
Needs-assessment and care-planning meeting between older people, their family members, care managers from the local authority and, when required, staff from health- or social care providers. The needs-assessment should be accomplished in collaboration with older people and their relatives, and form the basis of the care managers’ decisions. In case of disagreement, older people can appeal the formal decisions made by the care managers.
Care managers’ formal decisions stipulate the specific social care and services that should be performed.		Care managers’ formal decisions stipulate a specified time-span within which older people can choose what services they want performed, as well as the specific social care tasks that should be performed.
Care managers’ decisions form the basis for assignment to the municipal provider.	Older people are presented with information about seven to eight different service providing companies, among which they are supposed to choose one.	Care managers’ decisions form the basis for assignment to the municipal provider.
	Care managers’ decisions forms the basis for the assignment to the chosen provider.
‘Welcome meeting’ between older people and home care workers to elaborate the details of social care and service provision in a care plan, based on the formal decisions of the care managers, which should be continually revised throughout the entire help-provision period.
Home care workers perform the social care and services stated in the care managers’ formal decisions, as agreed in the care plan.		Home care workers perform the service tasks of older people’s choice within a time-span stated in the care managers’ formal decisions, and personal and social care tasks according to the care managers’ formal decisions. Both social care and services are provided according to the agreed care plan.

Sample

Both qualitative interviews and participant observations, were analyzed (Kvale & Brinkman, 2009; Silverman, 2006). Interviews with two care managers (CMs), two nurse assistants (NAs) and four older users of home care services from each participating municipality, altogether 12 staff interviews and 12 user interviews, were analyzed. In addition, seven participant observations, of meetings in which older people and their relatives met representatives from eldercare to make actual choices and decisions about home care services, were analyzed. Older people in the observed meetings were between 75 and 92 years old, four were women and three were men. Interviewed older people were between 82 and 95 years old, eight were women and four were men. All participating older people were Swedish born and they were of varied socio-economic backgrounds. All participating staff were women, their ages varied as did also their educational backgrounds and years of professional experience. Most CMs had university degrees in social work or social care, and most NAs were trained assistant nurses.

Instrument

In the interviews we used thematic interview guides. The staff were asked questions about where, when, and how older people were allowed to exert choice and control; the roles of the different parties involved in these situations; and the information given to older people about their opportunities to choose. In the interviews with the older service users, their experiences of choice and control over what care and services they received; who provided their home care; and how the home care services were performed were explored. In the participant observations, an observation protocol was used, where notes were taken about who participated in the meetings, the roles and degree of activity of the different participants, the choice and control given to the older service users, if and how staff and/or relatives were supportive and responsive to the expressed views of the older service users.

Procedure

In all participating municipalities, the managers of eldercare introduced the researchers to staff willing to participate in an interview. The interviewed CMs, later arranged access to meetings in which they met older people and their relatives to make decisions about home care and services, and also helped recruiting older people for the interviews. The interviews lasted for about 1 h each. All interviews were audio-recorded and transcribed verbatim, both recordings and transcripts were saved on an external hard drive protected by a safety code and stored in a locked cupboard at the university that could be accessed only by the researchers in the study. Adjacent to the observations, informal conversations between the researcher and older people as well as staff took place. By combining interviews and observations, it was possible to gain detailed information about the participants’ views and experiences, as well as about the interactions between older people, their relatives, CMs and staff in choice- and decision-making situations (Silverman, 2006). Prior to the interviews and participant observations, all participants were informed about the study, both orally and in writing, and signed an informed consent form. Participants in the interviews also consented to the audio recordings. We preserve the anonymity of the participants as reported names of older people are pseudonyms, and staffs are presented only by their profession. The study has received ethical approval from the Regional Ethical Review Board (223-13).

Analysis

The thematic qualitative analysis was conducted in several steps (Emerson, Fretz, & Shaw, 1995; Silverman, 2006). The first author read through interview transcripts and observation protocols and marked the sequences relevant to the aim of the present study. Next, these sequences were brought together and emerging empirical themes were identified (see Table 2). In the Results section, the identified themes are illustrated by citations from the interviews or excerpts from the observations. Finally, three main approaches to enable older people to exert choice and control were identified and discussed in relation to the conceptual framework and related to findings in previous research. Regular discussions among authors took place throughout the entire analysis process.

Table 2. Overview over the empirical themes.

Preconditions for older people’s choice and control	Wide range of care and services
	Time and close collaboration
	Challenges of choice
	Informed choice?
	Flexibility in performance
	Limiting routines and subordination

Conceptual Framework for the Analysis

Features of different policy ideologies, together with Hirschman’s theory of consumer strategies on a market, were applied as tools in the analysis of the preconditions for older people’s choice and control (see Table 3).

Table 3. Conceptual model (based on Greener, 2008; Hirschman, 1970; Pearson et al., 2014).

Policy trend/Ideology	Users	Strategy for choice and control
Traditional welfare state	Clients – passive recipients	Professional assessment, ‘voice’ in interaction with the care worker
NPM (New Public Management); neo-liberalism	Consumers – rational agents	Exercising/having ‘choice’ according to preferences and interests, and possibility of ‘exit’
NPG (New Public Governance), network society	Co-producers – active participants	Both ‘voice’ and ‘choice’; negotiations around designing, managing, as well as consuming

Modern Swedish eldercare, introduced in 1950s, was based on a traditional welfare state ideology. Here, older people were seen as clients or recipients of publicly funded and provided services based on professional assessments. Care workers were supposed to plan and revise the care together with older people in a process with considerable features of ‘voice’, understood as attempts to influence or alter how services are provided from within (Hirschman, 1970). As services became more standardized, they were also more criticized and NPM (New Public Management), informed by neo-liberal ideology, later paved the way for the introduction of ‘the marketplace’ into eldercare services. Markets assume consumers to be independent, rational and benefit maximizing, exercising ‘choice’ between a variety of well-defined services (Greener, 2008; Mol, 2008). Older people are thus expected to use the strategy of 'exit' from a service-providing agency inefficient to meet their expectations or quality standards, and to choose a competitor (Greener, 2008; Hirschman, 1970; Pearson et al., 2014). If the user continues to use a certain service provider in spite of its low quality, it may be understood in terms of ‘loyalty’ (Hirschman, 1970). ‘Loyalty’ reduces the use of ‘exit’ and instead increases the importance of ‘voice’ as a strategy for choice and control. In Sweden, some municipalities have developed their own interpretations of individualized eldercare within municipally provided home care. These initiatives may be connected to what Pearson et al. (2014) labeled as NPG (New Public Governance), in which the perspective has changed from regarding service users as consumers towards seeing them as co-producers, and not only having ‘choice’ and opportunities of ‘exit’ or ‘loyalty’, but also ‘voice’.

Findings: Preconditions for Older People’s Choice and Control

The overall aim of the present study was to analyze the processes and practices of individualized eldercare in Sweden at the local municipal level, with a focus on the preconditions for older peoples’ choice and control. The choice and control available to older users of home care services could be described as decisions about ‘what’ care and services they needed, ‘who’ should provide the care and services, and ‘how’ the care and services should be performed. This will be further elaborated below, where the themes emerging from the analysis of the empirical data are presented.

Wide Range of Care and Services

Before older people received home care services, a care planning meeting at a hospital ward or in the home of the older person took place, where the first ‘what’-decisions were made. The older persons were asked to express their own perceived needs and preferences, and were granted home help with the chores they could not manage on their own:

The CM makes a home visit to Maria, who has applied for home help. The CM asks Maria what kind of support she needs. Maria wants help with showering, laundry, taking out the garbage, and meal services. The CM asks about how often Maria needs support. Maria states that she is very glad that she can get so much help, but she also thinks that it is a lot to think about and decide. (Observation 1, home visit, Provider-choice municipality)

The interviewees declared that the wide range of care and services offered and available from eldercare reflected the everyday needs of most older people, and thus contributed to their possibilities to control their situation: ‘… you can get so much different support at home’ (CM 1, Traditional municipality).

Yeah, I could get anything I needed, much more than I actually wanted. I could get anything I wanted, no problem. (John, Provider-choice municipality)

Time and Close Collaboration

Time was pointed out as a critical aspect of older people’s choice and control especially over ‘what’ kind of care and services they wanted. On the one hand, older people needed time to get used to their changing circumstances and to reflect over what support they needed. On the other hand, the CMs needed time to evaluate how granted care and services worked out in practice.

According to the interviewees, decision-making within the traditional municipality were allowed to take time, and was characterized as a process where older people could ‘test and revise’ before the final decision. This was made possible due to the close contact between the users, CMs and the NAs providing home care:

I didn’t know what home care services were. They (CM) had to tell me what I needed and what help I could get.//I have a very good contact with the CM, she comes to see me ones in a while. If I want to revise anything, then I just call her. (Elsa, traditional municipality)

CM: We make a number of changes back and forth [in the decisions], yes we do. Interviewer: Who provides input for changing decisions?

CM: The home help staff… (Interview CM 1, Traditional municipality)

We have really close contact with CM, daily contact. We have that possibility as staff. (NA 2, Traditional municipality)

However, in the municipality with provider-choice, the multitude of different providers inhibited the possibility of close contact over time between CMs and NAs. Consequently, the CMs formal decisions were more difficult to change once the home help had started:

Then it’s really problematic if the older person wants more support than what has been decided. Then we have to make a note about it and then call up social services [CM] and ask for more… It can take a little longer sometimes, a lot of back and forth. [CM]. (NA 1, Provider-choice municipality)

In the service-choice municipality there was no need for users to decide beforehand exactly what kind of support they wanted, as long as it referred to chores that were defined as ‘service’. The CMs’ decisions were based upon tasks the older person could not manage independently and a specific time-span was granted. Within this time span, flexibility was allowed. Thus older people, in collaboration with NAs, could choose and control what services they wanted to be performed at each help occasion:

They have the possibility to choose what they want to have help with. We have time specified decisions, they have two hours and we cannot leave after an hour. If they want to sit and talk with us for an hour, then we will do that, if they want us to sew a button or sort the recycling, we do it. (NA 1, Service-choice municipality)

However, some of the users found it difficult to tell the staff what they wanted them to do:

I’m supposed to, they (the staff) urge me to tell them if I want something done. But I find it difficult. (Annie, service-choice municipality)

Challenges of Choice

The municipality with provider choice was the one where choice and control over ‘who’ provided the home care services was available to users. In many interviews with the service users, the difficulty of making this choice emerged. Nevertheless, some of the users had been very active in making their choice of provider:

It was when my wife was still alive, we were at this exhibition…where various providers of health and social care were represented. Some of them were providers of home care services, and we choose “Maidservice”. (Karl, provider-choice municipality)

However, the CMs stated that many users experienced difficulties or were uninterested in making a choice of provider, as their focus was mostly limited to ‘what’ support they could receive:

Many older people wonder ‘What kind of smorgasbord do you have to choose from?’…They are most interested in ‘what’ kind of help they can get…. (CM 2, Provider-choice municipality)

When the CMs and users had reached an agreement on what help the user needed they also had to decide ‘who’ should provide the support. Like Maria in the excerpt below, many users actually preferred not to choose, and left the decision to a relative:

When Maria and the CM have agreed on what help she needs, Maria has to choose and declare her preference of provider for performing the care and services. Maria does not want to make the choice herself, instead she will ask her daughter to choose. (Observation 1, home visit, provider-choice municipality)

When the users did not make an active choice of home care providing agency, they were offered one of the providers according to a model for random choice² used in the municipality, or based their choice on recommendations from friends or neighbors. Moreover, the users could potentially change their decisions about ‘who’ they wanted to provide their care and services if they were not satisfied. According to CMs and NAs, this rarely happened since many older people were hesitant to make a new choice, even when they were dissatisfied: I haven’t come about to make it happen yet, maybe one day I will… (Karl, provider-choice municipality)

In the service-choice municipality, older people’s opportunities to choose which services they wanted to be performed within a set time-span could be difficult, when the time-span was too narrow to allow the staff to perform all services they needed and wanted. One of the users needed help to vacuum and said: They’re supposed to help me if it’s something else that needs to be done. But it depends on how it looks here at home. There’s always dust… (Lisbet, service-choice municipality)

Informed Choice?

In the municipality with provider choice, older people had seven to eight care and service providing agencies to choose from. Each agency was briefly presented in a brochure. The CMs said that in order to make an informed choice, the older person needed thorough information about the similarities and differences between the providers. However, they experienced that no such information was available, which made the choice difficult: Many find it difficult to choose a provider, they don’t know about them (CM 2, Provider-choice municipality).

However, some of the users were satisfied with the information, which allowed them to make an active chose:

The information I got was very good. No problems at all, there were many companies to chose from. Some of them were from out of town, or only offered congealed food, and I wasn’t interested in that. (John, provider-choice municipality)

According to both the users and the CMs, the quality of the meal services offered by the provider often played an important role: ‘Meals are important…The companies do differently.’ (CM 2, Provider-choice municipality). According to the CMs, this has resulted in competition between providers and development of services:

The satisfaction with the food has actually been pretty low with the municipal provider, but it’s higher with the non-municipal. Now the municipal agency is developing their services. (CM 2, Provider-choice municipality)

Information appeared to be essential in the service-choice municipality as well. Many users did not seem to know about the possibilities to exchange services to be performed:

I: If you want the staff to do some other chores for you?

U: I haven’t thought of that.

I: But have you got information about “service-choice”?

U: No, no one has told me. (Marie, service-choice municipality)

Similarly, the staff interviewees reported difficulties clarifying the model to the users and pointed to problems explaining the opportunities to choose services:

The user, Sara, did not know about her possibilities to choose services, so the CM will send her some written information about it. (Observation 1, home visit, Service-choice municipality)

Flexibility in Performance

CMs and NAs stressed the importance of giving users possibilities to exert choice and control over ‘how’ the home care services were to be performed. The details of the support-provision were elaborated between the older person and the home care staff at an initial ‘welcome meeting’ and throughout the entire support-provision period. The excerpt below illustrates a welcome meeting between Steve, his son, and a nurse assistant:

The nurse assistant asks Steve what he wants for breakfast and at what time he wants to have his breakfast. Steve explains that he wants porridge and coffee. She continues to ask about the other meals as well. (Observation 3, ‘welcome meeting’, Traditional municipality)

In the interviews, the NAs underlined the importance of being responsive to the wishes of older people, and how they tried to respect how each person wanted the support to be performed:

If they are late-sleepers, they are not supposed to get up at seven, but then they have the possibility to stay in bed until nine. (NA 1, Provider-choice municipality)

We try to adapt to older people’s wishes the best we can. … it’s different for everyone. (NA 2, Traditional municipality)

Nevertheless, the NAs expressed that they could have some initial difficulties interpreting the wishes of the older people, especially those with compromised cognition or dementia. Thus, they also emphasized that decisions about ‘how’ were not only made at the initial stage of support-provision. Rather, they were seen as a continuing process over the entire support-provision period:

Certain things are continually being worked out, all the little things, while performing help. We do not write down exactly how the help should be given because it could change. Some want help in the same way every time, some want to have it differently each occasion. (NA 2, Traditional municipality)

Most of the users experienced the staff to be responsive to their wishes, and said: I have nothing to complain about. I get the help I need. (Mats, traditional municipality) However, some of the users experience it as tiresome to have to explain how they want the chores to be done at each new occasion: One has to tell them each time, this and this, like this, like that… (Axel, service-choice municipality)

In the municipality with service choice, some of the interviewees, mostly staff, praised the flexibility allowed and called it ‘choices in the moment’. Nevertheless, they wanted the system to include all social care and not only service chores:

‘It’s not supposed to be separate things, service and social care. I want to be flexible, ‘if you want to shower today, we’ll do it.’ (NA 2, Service-choice municipality)

Limiting Routines and Subordination

In spite of the staff interviewees explicit intentions to support users’ possibility to exert choice and control, limiting conditions such as guidelines, schedules, and routines of eldercare emerged in the interviews:

They [the provider] have certain shopping days when they go and shop, and certain cleaning days… it’s a little rigid, with the schedule and everything. (CM 1, Traditional municipality)

Most older people want their help in the morning around the same time. We don’t have a thousand people on staff at 8 in the morning. We always have to synchronize and bend a little. (NA 1, Provider-choice municipality)

Also, the users told about how limiting routines and guidelines restricted their possibilities to get the services they wanted: I have house cleaning every third week. It’s not enough, since I cannot tidy up anything myself. (Vera, traditional municipality)

According to some of the interviewed staff, users in fact only had a restricted influence over the most important prerequisites for autonomy and control, namely staff continuity or turnover, respectful treatment, and the possibilities to develop a mutually respectful relationship with the staff:

Older people want to control things they cannot control: sick leave, high turnover, lack of continuity, feedback, respectful interactions, that the staff really takes their time… (CM 1, Service-choice municipality)

This was also experienced by some of the users we interviewed: They promised me that I would not have many different staff, but it turned out to be the contrary – many different staff. I have lost track of them all. (Beda, provider-choice municipality)

Also, the sometimes paternalistic attitudes among eldercare staff could counteract users’ choice and control, as shown in the following excerpt:

Sara’s formal decision was reviewed during a home visit by the CM. She told the CM that the NAs did not want to let her exchange the support with outdoor walks for the services Sara wanted at the moment. (Observation 1, home visit, Service-choice municipality)

Older people’s dependence upon support puts them in a subordinated position, which could limit their control over the support. Many of the users explained that they did not want to complain, and felt that they were grateful for the help they got: I have never complained, I’m afraid to bother them. (Beda, provider-choice municipality) According to the CMs, older people might hesitate to complain or report dissatisfaction out of fear of worsening, or jeopardizing, the relationship with the staff.

Discussion

The empirical findings on the processes and practices of individualized eldercare, revealed three main approaches to enable older people to exert choice and control over their home care services. Depending on the way home care services are organized in the municipalities, different emphasis was put on the described approaches, and Hirschman’s consumer strategies were to a varying extent made available for the older service users (Greener, 2008; Hirschman, 1970).

Test and Revise

The possibilities to continually adapt the initial decisions about the care and services to the needs of the users, to ‘test and revise’, could keep care and services more up to date with the actual needs of older people and thus promoted their choice and control. Here, user ‘voice’ was emphasized and many users seemed to be allowed a fair amount of control over what care and services were performed, as well as over how they were performed. To have the chance to renegotiate choices and decisions, after the support-provision had started, has previously been found to be of importance (Dunér & Nordström, 2010; Glendinning, 2008). However, for users that could not themselves express their wishes, good communication between CMs and provider staff was essential. In the municipalities with one public provider of home care service, the conditions for close collaboration between CMs and the staff providing care and services were more favorable, which facilitated this opportunity. In the provider-choice model, however, the initial decisions about care and services were very difficult to change, once the support-provision had started. The limited possibilities for integrated working between CMs and the many different care and service providing agencies restricted opportunities to continually adapt the decisions to older people’s present needs (see Berglund, Blomberg, Dunér & Kjellgren, 2015). Here, the staff described the process of changing a decision already made as cumbersome and time-consuming. Previously, bureaucratization has been shown to prevent personal budgets from being able to adapt to the changing needs of older people (Slasberg, Beresford, & Shofield, 2012).

Choices in the Moment

In addition, in the service-choice municipality older people were allowed to choose what service chores they wanted to be performed, within a given time-span, at each support-provision occasion. Thus, the ‘choices in the moment’ allowed users some flexibility to work out ‘what’ services they wanted in collaboration with the staff. Here, the intention was to allow users both ‘voice’ and ‘choice’ (Greener, 2008; Hirschman, 1970). Yet, the fact that this possibility did not exist for social or personal care, together with staff unwillingness, insufficient information, and limited time was experienced to constrain older people’s ‘choice’ and ‘voice’. Traditional notions about what social care entails, and what services are considered ‘appropriate’, appeared to limit users’ opportunities to make the most of their personal budgets (Newbronner et al., 2014).

Quality Improvement Through Competition

The older users in the provider-choice municipality, were the only users who could choose ‘who’ they wanted to perform their home care services, among several care and service providing agencies. Here, ‘choice’ and ‘exit’ were considered the main strategies for older users to exercise choice and control (Greener, 2008; Hirschman, 1970). Users were allowed to choose a care and service providing agency and to terminate services from a provider that did not live up to their expectations. However, even though some users did active and conscious choices of provider, both users and staff pointed to difficulties, e.g. insufficient information, frailty and vulnerable situations, connected with this choice. Similar findings have also been reported from research conducted in Sweden and the UK (Edebalk & Svensson, 2005; Hjalmarsson & Norman, 2004; Newbronner et al., 2014; Rodrigues & Glendinning, 2015). Moreover, as ‘loyalty’ (Hirschman, 1970; Vamstad, 2016) occurred more frequently than ‘exit’, as a user strategy, ‘voice’ emerged as an important strategy as well. Nevertheless, as argued by proponents of marketization and consumer-choice (Ministry of Health and Social Affairs, 2007; Rodrigues & Glendinning, 2015; Rostgaard, 2006), the resulting competition between providers had led to improved quality of some of the services offered (e.g. meal services). In the municipalities with publicly provided home care services, older people did not have any alternative providers to choose from.

Finally, all interviewees stated that flexibility regarding how care and services are actually performed was most important to enable users’ choice and control over their situation. All interviewed CMs and provider staff expressed the intention to be responsive to older people’s ‘voice’, but acknowledged that organizational routines, paternalistic attitudes, and users’ subordinated position limited users' choice and control. These restrictions were also evident in the user interviews. As shown in previous research, users tend to adapt to how support is performed (Boyle, 2005; Dunér & Nordström, 2010; Persson & Berg, 2008), and some users may have difficulties articulating their wishes and making active and rational choices (Meinow et al., 2011). Moreover, paternalistic attitudes and organizational conditions have been shown to restrict users’ choice and control (Dunér & Nordström, 2010; Newbronner et al., 2014; Persson & Wästerfors, 2009; Slasberg et al., 2012).

Conclusions

The three approaches to enable older people’s choice and control over their home care services, revealed in this study, are made available depending on the varying ways the services are organized within the local municipalities. Although all three approaches had their strengths, users in all three municipalities were enabled to act more like clients than consumers or co-producers. The lack of time and staff continuity, turmoil and vulnerable situations when expected to make choices, together with standardized routines and services of eldercare, all prevented older people’s choice and control over their situation.

Strengths and Limitations of the Study

This study is unique in that it is the first study including the perspective of both older users of home care services and staff in municipalities with different ways of organizing home care services in Sweden, and thus presents a multifaceted picture of the preconditions for older people’s choice and control. In addition, through combining interviews and participant observations, both experiences of as well as actual interaction between service users and eldercare staff was captured. However, as this explorative study is limited in scope and restricted to a fairly small sample, the findings must be interpreted with some caution.

Implications for Policy and Future Research

To allow the municipalities to live up to the policy intentions of Swedish eldercare, namely to give older people choice and control and a customized service, sufficient financial and organizational resources are needed. Furthermore, policy makers are suggested to focus on how to combine the strengths of the revealed approaches to invite and enable older people in need of support to become co-producers and partners in designing, managing, as well as consuming, care and services. In this study the views and voices of older home care users and staff from eldercare were analyzed. The study hereby contributes with empirical findings to a debate that otherwise is characterized more often only by ideological arguments. However, future research analyzing quantitative data on an aggregated level is needed to achieve generalizable knowledge about the strengths and weaknesses of different ways to organize eldercare services to accomplish the policy goals of individualized eldercare, according to the needs and preferences of older service users.

Acknowledgments

The authors wish to express our gratitude to the participants for sharing their experiences with us.This research was supported by the Swedish Research Council for Health, Working Life and Welfare, under Grant number 2012-0175.

Disclosure Statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was supported by the Swedish Research Council for Health, Working Life and Welfare, under Grant number 2012-0175.

Notes

1 This number varies greatly between municipalities with provider-choice models.

2 A model for random choice, based on month, was implemented in this municipality as many people would not want to choose provider.