Fortunate and fearful: Emotions evoked by home care policies for older people in Ireland
Luciana Lolich & Virpi Timonen
This is a pre-acceptance, pre-copy edited version of an article published in Emotions & Society. The definitive publisher-authenticated version is available online at DOI: https://doi.org/10.1332/263169020X15843025702815
Please cite this article as:
Lolich, L. and Timonen, V. (2020) ‘Fortunate and fearful: emotions evoked by home care policies for older people in Ireland’, Emotions & Society 2(1).
Abstract
This article examines the emotions of fear and feeling fortunate experienced by key actors in home care services in Ireland. We take a relational approach to emotions, that is to say, an understanding that emotions are produced in social interactions and play an essential part in how people engage with, and respond to long-term care policies. The study involved focus groups and in-depth interviews with 104 participants. Our findings show that the most vulnerable participants, service users and care workers on precarious contracts, feel fortunate or fearful about outcomes that had or would have a direct impact on them: having a good carer and obtaining job satisfaction; or losing a home care package and not having enough work. Professionals were more likely to speak about luck and fear not in relation to what could happen to them directly but in relation to the fate of service users and care workers. The unregulated home care services in Ireland have influenced actors to construe their own and others’ participation in the system as increasingly individualized, where desired outcomes depend on one’s good luck or strong personal relationships. For the system to work properly trust needs to be present not only at the micro level of individual relationships but also at a system level. This could lead to a decline in emotions that centre around feeling fortunate and fearful, and an increase in expressions of trust and a sense of control by both care providers and care recipients.
Key words: emotions; fear; home care; luck; social policy
Fortunate and fearful:
Emotions evoked by home care policies for older people in Ireland
Introduction
Public attitudes towards welfare policies have been studied as a rational process, where individuals cognitively evaluate expected costs and benefits of a policy (De Borger and Proost, 2012; Schuitema et al., 2010). Much of this research is framed in terms of perceived deservingness (or lack thereof) of different groups of beneficiaries (van Oorschot, 2006). Little attention has been paid, for example, to how social policies trigger emotions in the people who are the subject of such policies (Holmes, 2004; Scribano et al., 2015). This is important because while emotions are intrinsically linked to social and cultural processes (Gross and Barrett, 2011; Hochschild, 1979) they are also integral elements in relations of power and government (Burkitt, 2005). Social policies that are developed to tackle specific challenges (such as a growing ageing population) influence how people understand, experience and feel about the world they inhabit (Cena, 2015).
Emotions are a product of the relations and interactions between humans, rather than an individual or internal phenomenon (Burkitt, 1997). Emotions emerge within social relations and give meaning and value to the situations in which we are located (Burkitt, 2018; Holmes, 2019). Emotions are intense, often ambivalent and closely connected with one another, so that ‘hope alternates uneasily with fear, as a single event transforms hope into grief, as grief, looking about for a cause, expresses itself in anger …’ (Nussbaum, 2001, p.22 quoted in Burkitt, 2005). It is not always possible to disentangle distinct emotions or to locate them within individuals (Holmes, 2010). This ambivalence and alternation of emotions makes emotional responses hard to predict in all relations, including political relations (Burkitt, 2005).
This article explores how key stakeholders in home care services in Ireland experience emotions of fear and feeling fortunate within the carescape of long term care. Carescape refers to the interplay between the macro and the micro levels of care practices (Bowlby, 2012) and the complex embodied and organizational spatialities that emerge from and through the relationships of care (Milligan and Wiles, 2010, p.740). Our intention is not to formulate a comparison of the emotions experienced by actors in long-term care services in Ireland with the potential emotions arising in other countries’ carescapes. Rather, we focus on the emotions experienced by key actors in Ireland and frame this analysis as a relational approach to emotions, that is to say, an understanding that emotions are produced in social interactions but also play an essential part in how people engage with and respond to long-term care policies in Ireland.
Home care services in Ireland
Globally, the number of persons aged 80 years or over is projected to increase more than threefold between 2017 and 2050, rising from 137 million to 425 million (United Nations, 2017). This expanding aged population has resulted in an increasing need for long-term care services for older people around the world (Genet et al., 2011). Pressure on costs and service users’ preferences for home-based care services (Donnelly et al., 2016) have led to a shift from the long-term institutional care of older people to home and community-based care (Low et al., 2011). At a global level, the promotion of ‘ageing in place’ can be traced back to 1994 when the Organization for Economic Cooperation and Development (OECD, 1994) started advocating that people should have the choice to continue living in their own place of residence in later life.
However, this narrative of choice comes at a time when many governments are disinvesting in public home care services (Lolich, 2019). When choice is prioritised as a governance principle at a time of declining investment in public services, people will often have no choice but to ‘choose’ for-profit home-care providers (Lolich, 2019, p. 517). The rhetoric of choice has been accompanied by a growing trend of privatisation and marketisation of health and social care services in many western countries (see André and Hermann, 2009), including Nordic countries (Szebehely and Trydegard, 2012). These trends have significantly reshaped the global carescape, with many countries adopting market-based or market-like mechanisms in the provision of care services, albeit with considerable variation in the timing of such reforms and the extent of their realisation (Bach and Bordogna, 2011). For example, market policies such as a customer-choice model and a tax deduction on household services and personal care have been introduced in Sweden (Szebehely and Trydegard, 2012).
Government policy for older people in Ireland is to support them living in their own homes for as long as possible (Timonen and McMenamin, 2002; Timonen and Doyle, 2008). The Care of the Aged Report (1968) was one of the first official documents to clearly articulate the policy preference for domiciliary and community-based care (Timonen and McMenamin, 2002). Publicly funded health and personal social services in Ireland are delivered through a myriad of separate and often complex structures. The Health Services Executive (HSE) Primary Care Division provides community health services to older adults including nursing, physiotherapy, occupational therapy, speech and language therapy, palliative care and social inclusion services (HSE, 2017). Long-term care services in Ireland are provided by the HSE Social Care Division, which funds residential placements in nursing homes (through the Nursing Home Support Scheme, NHSS) and Home Support Services which are frequently referred to as Home Help and Home Care Packages (HCPs) (HSE, 2018).
In recent years, pressure to control the costs of care has resulted in the outsourcing of HSE-funded home care services to a highly competitive market attempting to secure HSE tenders (MRCI, 2015). Lack of statutory entitlement to services and absence of regulation has led to an uneven distribution of home care services featuring significant waiting times for individuals and fuelling growth in the private sector and self-employed care workers (HIQA, 2017). The government expects much of the deficit in the provision of public home care services to be offset by private care paid for out-of-pocket by families, or delivered within the family, usually by female relatives (Burke, 2016). The Irish government has recognised that informal carers (unpaid family and friends) provide the bulk of care that enables people to live at home (Houses of the Oireachtas, 2018). Despite this, home care services have been construed as playing a vital role in enabling people to live independently in their own homes and communities for as long as possible (IPH, 2018). Growth in the private sector – which cannot be accurately estimated due to the lack of licensing laws – has resulted in a multiplicity of care agencies employing increasing numbers of care workers, many of whom are employed on zero-hour contracts (MRCI, 2015).
Care services provide a rich context for studying the relationship between emotions and policy, because they pertain to situations where individuals are in need of help and support; hence, issues of vulnerability and intimacy come to the fore, especially in the case of Ireland where home care services have expanded rapidly, but remain largely unregulated (Timonen et al., 2012). Moreover, because of the lack of statutory entitlement, access to care is discretionary, based on both assessed need and availability of funds. Where care is available, it tends to be heavily focused on physical care needs (bathing, eating and toileting) rather than psycho-social needs such as desire for companionship and social activities (Lolich and Lynch, 2017; McDonald et al., 2019). This article examines the emotions that permeated people’s accounts when talking about their experiences in delivering or receiving home care services in Ireland. We link the analysis of these emotions to issues of trust, control and structuring conditions in the system of formal home care provision. Contextual factors affecting home care services in Ireland will be highlighted further in the discussion section. This approach aligns with our research method – Grounded Theory – as the emphasis is on emergent findings and using them to generate novel conceptualization of a topic that has been hardly discussed in the literature, namely the role of emotions in care services for older adults.
Methods
The material reported here was taken from the Horizon 2020 project titled SoCaTel. The project focuses on the potential of Information and Communication Technologies to enhance formal long-term care services in Europe. The data analysed here pertain to first and second stages in the project, conducted in February-October 2018, to understand the experiences and expectations of key stakeholder groups in the area of home care for older adults.
We employed the Grounded Theory (GT) method, maintaining a high level of openness to novel and unexpected findings in the process of enquiring into experiences and processes related to home care services (Timonen et al., 2018). During the fieldwork, we wrote memos and field notes reflecting on what we had learned from the conversations. Theoretical sampling (Conlon et al., 2020) was engaged to saturate key emergent concepts pertaining to emotions expressed by participants. When we examined the data, we detected distinctive strands of talk that were first open-coded as expressing various emotions (for instance fear and anxiety) or experiences that were framed by the participants as joyous, fortuitous and fortunate. We then engaged in selective coding that honed in on these expressions of emotions and circumstances that were grouped together under broader categories such as ‘luck’, and further proceeded to seek theoretical saturation around the categories of ‘fortune/fortunate’ and ‘fear/fearful’. In line with the GT method, we employed abductive reasoning to make sense of these patterns. Abduction refers to the tracing of antecedents for observed phenomena (Timonen et al., 2018). We engaged abductive reasoning to tease out the reasons behind the prominence and function of emotions and perceptions of fortune and fear in the experience of home care services, by asking: why do people relay these emotions and what is driving them? We took a relational approach to the analysis (Holmes, 2004) as emotions can only be understood within social relations and interdependencies between people (Burkitt, 1997).
We consulted a diverse range of older adults’ services across health and wellbeing, primary and secondary care, rehabilitation and reablement services delivered in the community and older adults’ own homes (Table 1). We opted for focus groups as the primary data collection method, as the topic is amenable to homogeneous group conversations where different professionals (e.g. social workers; agency managers) or older people can share their experiences with peers. The study involved a total of 104 participants who took part in 21 focus groups and three in-depth interviews between February and June 2018 (Table 1). Participants were recruited through the involvement of the HSE (a public sector partner in this project), with established access to day care centre attendees, home care agencies, care workers, community nurses and social workers among other professionals.
Table 1 Profile of focus group participants
| Participant group | N | Male | Female |
| Organisation and management (agency directors, health and | 29 | 5 | 24 |
| nursing care professionals) | |||
| Delivery of care (home-care workers) | 18 | 1 | 17 |
| Older adults | 46 | 20 | 26 |
| Others (for example, community groups, volunteers, family carers) | 9 | 1 | 8 |
| Policy and planning | 2 | 2 | 0 |
| Total | 104 | 29 | 75 |
The number of participants in each focus group ranged from three to seven, the typical number of participants being four. The ages of the older people we talked with ranged from mid-fifties to 99 (the six participants in their 50s were from the Traveller minority ethnic group, which has much lower life expectancy than the population of Ireland in general). The sample contains older adults from low-income inner-city neighbourhoods, affluent urban areas, and a mixed-income rural area. Focus group discussions and interviews lasted 60-90 minutes; all were audio-recorded, professionally transcribed verbatim, and anonymized.
In accordance with the aims of the wider project, a half-day co-creation workshop was held in October 2018, using purposive sampling to recruit a sub-sample of participants from the focus groups. This sub-sample comprised of individuals who had participated in the focus groups and had expressed an interest in participating in the workshop. Six older service users and 13 providers participated in the workshop (see Table 2); proceedings were audio-recorded and transcribed verbatim. In total over 700 pages of transcripts were coded by the authors.
Table 2 Participants in co-creation workshop
| Participant group | N |
| Care workers | 4 |
| Health and social care professionals | 5 |
| Older people | 6 |
| Volunteers/companions | 2 |
| Providers (home care agency managers) | 2 |
Ethical approval was obtained from a research ethics committee at the authors’ host institution in December 2017. All participants gave informed and written consent and in those cases where it was possible to single out individual participants, pseudonyms have been used in the data extracts. In some cases, we do not identify individual respondents, as they were not singled out by name in the transcripts. Indeed, this would not have been possible in some cases due to, for instance, the presence of six people in a group who spoke in rapid conversational manner. However, because our focus groups were homogenous, this was not an issue in identifying the type of stakeholder.
In the next sections, we outline the emotions conveyed by the participants and draw out the antecedents for the array of emotions experienced by participants.
Findings
Service users and providers frequently referred to long-term care services in Ireland as problematic, irrational, unfair and lacking in transparency. Participants expressed a range of emotions, from positive to negative – we start by outlining the positive ones, which centred on the notion of joy at their good fortune and then proceed to outline the negative ones, which centred on feeling fearful. The categorization of emotions into ‘positive’ and ‘negative’ is a simplification that is used to organise the article; it does not amount to a claim that this binary classification represents high-level terms capable of capturing all care-related emotions.
Feeling ‘fortunate’
While feeling fortunate is not an emotion per se, expressions of feeling fortunate are normally framed by expressions of happiness and joy. Joy has been recognised as a core emotion (Kemper, 2002) and discussed in relation to other emotions (Burkitt, 2005). However, less attention has been paid to a relational understanding of happiness as an intersubjectively, culturally experienced complex of emotions (including hope, joy and feeling fortunate), and how equality and distribution of resources (Holmes, 2019), including care, affect feelings of happiness and well-being. There is also a lack of sociological literature engaging with notions of luck and the examination of luck has remained at the level of a ‘residual category’ in sociological research (Loveday, 2018). Emotions can be ambivalent, unstable and closely connected to each other (Burkitt, 2005). We argue that feeling ‘lucky’ or ‘fortunate’ is closely associated with feeling happy and joyful but also hopeful and fearful of what might happen next, as there is a degree of uncertainty and risk. In our research, participants’ accounts were permeated with the use of emotion words denoting joy around the concept of ‘fortune’, for instance ‘luck’, ‘lucky’ and ‘blessing’. Service users felt ‘lucky’ if they had a good caregiver or had helpful family members and friends around. Some referred to their geographic location in the service landscape as a ‘blessing’ if it allowed easy access to services. Professionals referred to the ‘postcode lottery’ (variability in availability of services between areas) to denote luck in terms of location and the quality of the care received. Care workers alluded to their good fortune when they felt able to engage in meaningful relationships with the service users, providing holistic care rather than just personal care or domestic tasks.
Service users and care workers
From the service users’ perspective, there was a general feeling that good care was like a prize in a care draw. If things turned out well, older participants felt ‘lucky enough’ (FG15-Service users) or ‘very lucky’ (FG12-Service users) to have a health or social care professional who cared about them and whom they could trust. John, describing his care worker, expressed surprise that things had turned out well, alluding to the relational aspect of feeling ‘lucky’ in comparison with others:
I was surprised that I got somebody so good. Because speaking to other people they’ve all different experiences. So, I’m very lucky, I feel very lucky the way things have turned out. (FG8-Service users) [emphasis added]
Service users also tended to phrase family involvement (help with day-to-day activities and negotiating the system) in terms of luck: ‘Lucky enough I have a couple of bright kids and I just throw stuff [forms to fill in] in a visit…They look after that for me’ (FG10- Service users) and ‘I’m very lucky I have family that call all the time you know’ (FG12- Service users), and ‘[daughter] just comes down to visit me […] she goes off and washes the floor […] I suppose I’m lucky now’ (FG24- Service users) [emphasis added].
Service users felt fortunate when their location allowed them to access services in an easy manner: ‘So we’re very lucky to have [the centre]’ (FG 12-service users) and ‘I was lucky to live in south Dublin because the [anonymised] medical centre […] was very near’ (F21-service users). Jacklyn felt fortunate that her social connections helped to get formal care for her father: ‘I was lucky that I knew somebody who knew somebody’ (F21-Service users). Service users also felt grateful and lucky if they had the necessary information and knew ‘what all my entitlements are […] I’m lucky in that I’ve been working in the general area for most of my life’ (FG9-service users). Service users also commented on how they were lucky to have a care slot of more than 30 minutes as these slots allowed them to build trusting relationships with their care workers (FG24-Service users), and similar opinions were expressed in the workshop. Lack of continuity in care was seen as a hindering factor in building trust with service users and allowing them to open up to care workers about their worries such as being ‘thrust into hospital’ or a nursing home (Table 2-Co-creation workshop).
Care workers spoke of the difficulties in achieving job satisfaction when they have to rush from one service user to the next. Mary, a care worker, described a service user as ‘lucky’ as he/she was the last one on her shift and therefore she was able to stay longer with the service user by ‘gifting’ (Bolton, 2005) her own time:
My client always says to me ‘I’m your favourite client’. I do say ‘why?’ ‘Because you sit and have a cup of tea with me’. ‘Now you’re very lucky, you’re the last every day’ I do say. (FG18-HSE Care workers) [emphasis added]
Care workers called for framing care in a holistic way, trying to promote wellness rather than just personal care and domestic tasks. Tom, a care worker, who was doing companionship hours (as part of a home care package) with service users and could use this time to help them with physiotherapy exercises felt lucky to have the time and opportunity to engage in more holistic care. ‘Companionship hours’ is used here by Tom to refer to care that goes beyond personal care or house cleaning: ‘I was very lucky I used to do that [physio] with a lot of clients that I was on companionship hours with’ (Table 3 – Co-creation workshop). There is no official record on how many ‘companionship hours’ are allocated as part of home care support, but many of the people we talked to mentioned that reserving time for companionship is unusual.
Management and care professionals
Home care directors agreed that building meaningful relationships with service users is a challenge when visits are short, especially in the case of high-dependency clients and people who have only one call a week where it is difficult to guarantee that the same care worker would be sent for repeat visits:
…if you’re a client like that [high dependency] the likelihood is that you could have six to eight [formal] carers in that house. You may have a little bit more. But that’s where we try and minimize it. Or if you are somebody who has one call a day…you’d be lucky if you have two or three carers in the house assigned to you. (FG13-Home care directors)
Professionals commented that the type of service received by users was a matter of luck. Maria, a community nurse, admitted that ‘the aspect of me getting service for my patients and my clients is very, very different’ depending on the area (FG1- Public Health Nurses). Home care directors referred to this as the ‘postcode lottery’:
Mark: […] I have clients calling me, 89-year-old females who get a half hour every day. And yet I see other clients getting a 40-hour week who are less dependent than this individual …
Shane: It’s a luck-based thing, feels like luck sometimes.
Mark: It’s luck based, yeah.
Finbar: A bit of a postcode thing.
Shane: It is a postcode lottery. (FG4-Home Care directors)
Care professionals portrayed as fortunate those service users who had someone to advocate on their behalf, and often had to advocate for those with weaker supports. Sharon, a nurse, stated: ‘if they [service users] know me, they may ring me. And say, I’m struggling a little bit; I need a little bit more help’ (FG3-Public Health Nurses). Home care directors admitted that having a strong advocate helps to access services: ‘somebody who will put pressure on the person, the decision maker’ and ‘it’s not just a clinical decision, sometimes it’s pressure being applied from an advocate’ (FG4-Home Care Director). Niamh, a nurse, explained that she wrote detailed letters to supplement application forms, to effectively lobby for the applicant. However, she admitted that not everybody does this, which supports the belief that what or who you get is a matter of luck:
I would say see letter attached and I write out a letter, with any issues or concerns. Because the more information you give, the likelier that they’ll get approved. If you give them more details and kind of a better picture. (FG1- Public Health Nurses)
Care managers admitted there was a ‘luck of the draw’ approach in the allocation of care workers. This was described as a random process through which older people might get someone who does not ‘have a bog’ [a clue] what they are supposed to be doing:
You ring [a carer] and say, look it can you go to Mrs. White down the road. [They will say:] Ah no, I’m not working tonight. And you’ll ring somebody else, can you go to Mrs. White, ah I’m not working today. So, it’s kind of luck of the draw who you send. So, you might send somebody that’s only a week in the job down there. And they haven’t got a bog, you know they’re down there and they don’t know how to look after this person. (FG16-Care workers) [emphasis added]
Having outlined our findings pertaining to the most prominent positive emotion in our dataset (feeling lucky – fortunate), we now turn to examining the data that relates to the chief negative emotion relayed by the research participants, namely fear.
Fear
Fear is understood as a negative emotion caused by a real or imagined threat or a high degree of uncertainty about an important outcome. The object of fear should not be conceptualised as a threating agent who should be avoided, rather the object of fear is an expectation of negative outcome (Barbalet, 1998). The anticipation of change can be an important factor triggering fear. Not all change leads to fear but ‘under conditions of the social actors’ perceptions of insufficient power (Barbalet, 1998, p. 155) and lack of trust, the experience of change is likely to lead to fear. It is important to note that fear should be specified in temporal terms as ‘fear is not a reaction to an event, but to a prospect of an event’ (Barbalet, 1988, p. 155). Fear is therefore a future-orientated emotion.
Service users spoke about the fear of losing all or some of their services. Care workers were anxious about their job security and commented on feeling fearful in certain home care situations. Professionals also felt anxious about reducing care hours, as they feared this would ‘damage the relationship’ they had with service users (FG1- Public Health Nurses). Health and social care professionals also feared for service users’ safety and well-being. There was a general sense of uncertainty among participants in relation to how the other actors in the system operated, a situation that in turn gave rise to fearfulness. This fear seemed anchored in feelings of mistrust and lack of knowledge about the procedures governing the allocation of home care hours.
Service users and care workers
Some older adults told us how they continued to hold on to home care services even where their care needs abated, because of the fear of not being able to get them back. Trish, a service user, explained how in the aftermath of breaking her hip, the hospital organised a home care package for her, and that she was fearful of declaring reduced need for care because ‘once I stop them [care workers], they won’t come back, like that’ll be the end of it. So, I’m continuing to have them just to be there’ (FG12- Service users). Anne, also a service user, explained how she was cautioned by a supervisor: ‘don’t be too fast to get rid of them [care workers] because once you let it go you won’t get it back’ (Table 4-Co-creation workshop).
Care workers – most of them employed on zero-hour contracts – expressed fears about their job security. They spoke anxiously about taking ‘extra work’ at every chance they had (FG6-Care workers) because they worry about having no or fewer work hours allocated the following week. In some cases, they were also fearful of service users and their families, who could be aggressive and disrespectful. Home care directors agreed with this, stating that ‘the reality [of care work] is you could be given out to, shouted at, verbally abused…physically abused…racially abused’ (FG4–Home care directors). Overall, the feeling was that you did not know what you were going to find behind closed doors in care recipients’ homes. Fear was accompanied by feelings of mistrust and bafflement. Care workers commented that they would ‘love to know how they [provider agencies] actually allocate hours’ (FG6-Care workers). They felt that ‘some clients might have far too much time […] other clients then don’t have enough time […] to give them a shower’ (Table 1-Co-creation workshop) and ‘we see some people that would have hours that […] they don’t need them. They’re wasted, where you’d see somebody else might have a very short visit and is so lonely and so vulnerable’ (FG16-Care workers). From the care workers’ perspective, the allocation of hours often did not make sense, giving them the impression of a haphazard and uncaring system that renders them and service users powerless.
Management and care professionals
Community care professionals explained how they worry about telling service users that their care hours needed to be reduced as older people ‘fear they’re going to be left with nothing’ (FG2-Reablement primary care team) and ‘so a lot of nurses will not reduce homecare packages’, for fear of being seen as ‘the worst enemy in the world’, as the community nurses explain here:
Kate: It’s [home care package] a very hard thing to take away.
Miriam: Absolutely, it’s very, very difficult.
Kate: […] you needed to reduce the homecare package. Where you felt that person was at home and they had a bad spell and they got their homecare package. And they’d 21 hours. But actually, they improved and they actually were doing much better because of the support. To reduce that down you are the worst enemy in the world. (FG1-Public Health Nurses)
Social and health care professionals feared for clients who had no family to oversee their care. The general feeling was that when things did not go well, incidents were discovered by pure chance rather than as a result of a more systematic, pro-active approach. Kate, a nurse, recounted discovering the practices of a care worker who was leaving food and medication downstairs for a client who could not leave her upstairs bedroom: ‘it was only by chance I’d gone in that day’ (FG1-Public Health Nurses). Siobhan, also a nurse, explained that service users can ‘be very slow to complain about [formal] carers as they’re afraid, I mean they’re at their mercy’ (FG3-Public Health Nurses).
Nurses commented on how difficult it was for them to establish relationships with the care workers as they could be dealing with as many as 20 or 30 home care companies in the area and therefore ‘it’s very hard to get to know the carers’ (FG1-Public Health Nurses). This lack of personal relationships contributes to feelings of fear and mistrust. Social workers also seemed to have little insight into what happens in the ‘home care package office’ and were reluctant to advise patients to express preference for any particular care providers, fearing they lacked sufficient information about the providers. Many nurses also felt overwhelmed and fearful for the future of service users in a system that expected too much from them. Many felt they cannot ‘stretch even further, because we’re so stretched. You know what I mean; sometimes it’s on a wing and a prayer’ (FG1-Public Health Nurses).
Discussion
Through the analysis of the findings we explored how the participants appraised the home care services they encountered and how they made sense of their positions as service users and providers who felt fortunate and/or fearful. For the most vulnerable participants, service users and care workers on precarious contracts, feeling fortunate or fearful was about an outcome that had or would have a direct impact on them: feeling fortunate in having a good carer or obtaining job satisfaction; or fearful of losing a home care package or not having enough work hours. It is clearly not possible to establish objectively whether the participants had in fact been ‘lucky’ in for instance securing a certain level of services for themselves. It is also not possible to determine to what extent the fears that the participants expressed were due to real or imagined risks (Beck, 1992).
Service users were fearful of not getting good care or losing the care they had in what was described as an ambiguous set of rules for allocating home care packages and hours. Ambiguity is a striking feature of home care services (Timonen and Lolich, 2019): needs and situations tend to be open-ended and arguable, more subject to a range of possible interpretation than other arenas of health care; for instance, ‘is the possibility of falling in the bath a reason to put services into place?’ (Ceci and Purkis, 2009: 205).
Service users tended to construe success in home care in terms of luck so that finding a good care worker, or having someone who could help them out, were seen to result from some fortuitous encounter, series of serendipitous events, or as pure happen-stance. In her study of the sociology of gambling Reith (2006) explores how belief in luck can be a mechanism to cope with an unpredictable situation. Perception of luck fills the gaps in knowledge and helps to alleviate feelings of ignorance and helplessness (Reith, 2006). Belief in luck can provide people with an illusion of control, but it can also fuel anxiety and fear. In an attempt to gain control of the system, actors then feel they need to form trusting relationships with others. It could be argued that ‘luck’ is sometimes used as a way of covering over privilege (Loveday, 2018), for example in the case of those service users who lived in the more salubrious parts of Dublin. However, the narrativization of luck (Loveday, 2018) in our research suggests that this concept was not consciously used as a way of denying advantage. Instead, the participants took recourse to ‘luck’ when describing situations over which they felt no control and had little understanding of how they worked. For example, service users’ conversations were tightly focused on their own personal experience and experiences of people personally known to them. In other words, they saw themselves as individual cases, insular and isolated. Rarely did they seek to make sense of more general principles of allocation of services. While this is understandable, it is also a concerning reflection of the system and how people see themselves at its mercy and their care needs as a private matter, with little power or right to mobilize and demand change (Levitsky, 2014). Many of the older adults relied on others to help them to navigate the care system. From their perspective, trust in the system (to the extent they had trust) was built on personal relationships with the care workers, nurses and other service providers. This heavy reliance of personal relationships explains the gratitude expressed by those who felt that they found someone to look out for them. At the same time, the vagaries of unpredictable funding and lack of transparent rules around entitlement to services explain service users’ fears of losing the services and lack of trust in getting them back if needed. In this way, service users see themselves in a position of vulnerability vis-à-vis social polices (Scribano and De Sena, 2018, p. 97) but also with agency by continuing to hold on to care packages which they might no longer be entitled to (for instance if their health has improved). If there was a regular and timely review mechanism, people would worry less because they could access care again after a period of good health, if care needs emerged again.
For care workers, their fear centred on not having enough work or being alone in a service user’s home. Care workers framed as ‘lucky’ situations where they could obtain satisfaction from their job. This occurred where care could be approached in a holistic way, be it by having more time to interact socially with a service user or by being able to ‘gift’ (Bolton, 2005) some of their own time to the user. The experience of a minority of care workers who were employed directly by the public sector (HSE) was very different to the experience of the majority of the care workers in our research. The former work alongside the public health nurses and felt they could provide better care to their clients than other care workers (employed by private agencies), largely because they had control over how much time they spent with each service user (McDonald et al., 2019). The HSE care workers are employed on a permanent basis with at least 25 hours of work guaranteed weekly. They stated that they were lucky in the type of contract they had but lamented that they were a ‘dying breed’ (FG 18-Care workers) as this type of carer role is being phased out. The majority of the care workers in our sample were fearful about their job situation in a system that provided them with little security.
Professionals in general were more capable of influencing and controlling how the system works, and thereby had scope to orient help to those service users they perceived as deserving. They were also more likely to speak about luck and fear not in relation to what could happen to them directly but in relation to the fate of service users and care workers. The lack of regulatory control of service provision in Ireland means that it is very difficult to detect problems as they arise, creating fear and mistrust about how other actors in the system are performing. For the system to work properly, trust and knowledge between actors is important. Nurses and social workers should be able to trust the care providers they recommend to service users for the system to work effectively. Home care agency directors need to be able to trust that the system that allocates home care packages is fair and transparent and that having a better-quality service will lead to being granted a contract. From the home care directors’ perspective, the nightmarish nature of the sector seemed to be encapsulated in a procedure they called ‘random generator’ (FG4-Home care directors) whereby work (contracts to deliver care) is randomly allocated to different providers who then scramble to deliver it. There is no systematic evaluation of which care agency is in a better position to deliver the care to suit a particular service user. It is hardly surprising, in the case of home care directors, that being awarded a contract is seen to be a matter of luck due to the obscure competitive landscape of the home care market.
Trust and control
Through the analytical process of abduction (Conlon et al., 2020), we traced the various emotions expressed by the participants to the broader concepts of fortune and fear, and their origins in the Irish care system. We now take that analysis further and connect luck and fear to issues of trust and control. Perceptions and emotions of luck have their origins in the lack of knowledge and control that people feel they have concerning the home care system. As Lewis and Weigert (1985) explain, trusting behaviour may be motivated by strong positive feelings for the object of trust (emotional trust) or by good knowledge and information as to why the object of trust merits trust (cognitive trust), or, more usually, some combination of both. Taken to extremes, if all cognitive content were removed from emotional trust, we would be left with blind faith or fixed hope. On the other hand, if all emotional content were removed from cognitive trust, we would be left with nothing more than a coldblooded prediction or rationally calculated risk. While emotional trust is possible at primary group level, at a system level a rational/cognitive form of trust is necessary for the system to function properly. This is called system trust (i.e. trust in the functioning of codes of practice and safeguards) that characterises modern, complex societies (Lewis and Weigert, 1985). It is clear in the findings that at a system level, cognitive trust is defective as participants generally displayed a lack of knowledge as to how other actors in the system operate and described the system as unpredictable and random. Actors in the system anticipate any future actions as uncertain, generating emotions of luck and fear.
Fear is closely linked to uncertainty and lack of trust. However, luck and fear represent two sides of the same coin. The unpredictability and perceived randomness of the system generate feelings of being ‘lucky’ but also fear that next time things might be different (hence, for instance, the perceived need to hang onto services even when care needs abate). From sociological and social policy perspectives, trust must be conceived as a property of collective units and not belonging to isolated individuals. Being a collective attribute, trust is applicable to the relations among people rather than to their psychological states taken individually. Therefore, we may say that trust exists in a social system insofar as the members of that system act according to and are secure in the expected futures constituted by the presence of each other or their symbolic representations (Barber, 2000). It is the mutual faithfulness (Simmel and Wolff, 2012) on which all social relationships ultimately depend.
In home care services trust is the expectation of technically competent role performance (Barber, 2000) by different service providers. These expectations govern relations between nurses, care workers and social workers who, by virtue of their roles, are presumed to have different skills or degrees of power. Trust in this sense serves to maintain order, promote effective control and preserve solidarity and moral community (Barber, 2000) within home care services. The services will only work for the users if the different service providers can trust each other to perform their roles in a competent manner, and if the system of allocating and delivering care can be trusted to operate in a fair, transparent and predictable manner. At a micro level, trust is created through meaningful interactions and long-standing relationships between service users and providers. Trust involves a level of knowledge of the object of trust, that is somewhere between total knowledge and total ignorance (Lewis and Weigert, 1985). If one knew exactly what the outcome was going to be, there would be no need to trust. On the other hand, if one is absolutely ignorant about the object, there can be no reason to trust. It is here that we can differentiate between ‘luck’ and ‘trust’. When faced by the totally unknown or the highly uncertain, we can gamble but we cannot trust (Lewis and Weigert, 1985).
Trust facilitates the functioning of home care services at a micro level but is not sufficient to achieve a functioning system (House, 1985). Trust must be supplemented by distrust or vigilance, that is to say, by a set of legal mechanisms for monitoring and enforcing technically competent and responsible behaviour (Barber, 1983). Although trust is indispensable in social relationships, it always involves an unavoidable element of risk and potential doubt, a situation that in the context of care policies calls for regulation and enforcement of regulations.
The concepts of luck and fear are therefore associated with lack of trust and control. When information is limited or people cannot understand it (Poortinga and Pidgeon, 2003), they have to rely on others to make decisions and trust comes to play an important role. Consequently, trust is a prerequisite of functioning home care services, because the alternatives to trust are hoping for the best or living in fear (Lewis and Weigert, 1985); a situation reflected in the core categories of fortune and fear.
Conclusion
We have argued in this article that the participants’ emotional responses of feeling fortunate and fearful about home care services are linked ultimately to issues of lack of trust and control in the system. Emotions are relational and linked to the individual’s position within the macro system. Policy and service delivery shape the emotional experience of individual actors within the system. These accounts of home care are not only a set of narratives that describe particular experiences of different actors within home care services, but also reflect modes of ordering what is (perceived as) a random, non-transparent and nonsensical system. We argue that the narrativization of ‘luck’ (Loveday, 2018) and ‘fear’ is reflective of the lack of clarity and information that many actors have in relation to their position in the system. They are indicative of the diminished agency that actors feel in a system that they perceive as unpredictable and lacking transparency. These responses are also linked to wider conditions in the unregulated landscape of home care in Ireland. Despite this diminished agency within the system, individual actors engage in different activities – such as advocacy or silence – to attempt to rig the system in their or their client’s favour. Thus, our analysis pertains to issues of trust and control but also to structuring conditions. Overall, the governance of the system at a vertical and horizontal level is seen as problematic, with the different actors having little control or knowledge of how the other parts of the system operate.
Long-term care in Ireland provided a propitious context for examining the connections between care policies and emotions. Social policies can result in certain populations becoming discouraged, knocked down and defeated (Scribano and De Sena, 2018). Insufficient knowledge or understanding of social policies can create distrust and other negative feelings towards the people in charge of implementing polices. The unregulated home care services in Ireland have influenced actors to construe their own and others’ participation in the system as increasingly individualized, where desired outcomes depend on one’s good luck or strong personal relationships. Trust is essential and desirable in home care services but as Barber (1983) has pointed out, trust alone is not enough. For the system to work properly trust needs to be present not only at the micro level of individual relationships but also at a system level: creating trust by building in mechanisms of distrust i.e. to control, regulate and monitor access to and delivery of home care services. Paradoxically, distrust is an important force in preserving the trustworthiness of the actors allocating, managing and delivering care, and the care policy system as a whole. For policies in home care services to work, it is important to have clear communication channels and regulatory mechanisms that allow people to build trust and feel some degree of control over their role and outcomes within the services.The reforms required in the Irish home care system are legion and cannot be discussed within the confines of this article. However, regulating the sector, improving the working conditions of care workers and increasing the transparency and fairness of processes whereby care is allocated both to different providers and to individual service users would be essential starting points when striving for better experiences of care for all. Regulating home care services would allow for the introduction of clear standards and transparency for service providers. Better training and education of care workers could also help to modify the care context and build greater trust in formal carers. Giving care workers more control over their schedules is another structural reform that would help to avoid the need to economise on time and rush from one service user to the next (see McDonald et al., 2019). In addition, it is important to allocate time for companionship as part of the carer’s job description, as this would allow for the strengthening of personal relationships and cultivation of trust in the care system. Potential service users should know what they are entitled to, and these entitlements must be backed up through social care budgets that allow for the population ageing that is an ongoing trend in Ireland as well as virtually all other countries. These changes call for clear legislation, responsive policy, and increased financing of the sector. The introduction of standards in home care services should be implemented through an accreditation, training, monitoring, and inspection process. Ultimately, the problems we have identified can only be solved through political will and national policy-making processes. One way of gauging progress towards a better care system, we suggest, would be a decline in emotions that centre around feeling fortunate and fearful, and an increase in expressions of trust and the sense of control by both care providers and care recipients.
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Funding
Parts of this article relate to the H2020 SoCaTel Project. This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant Agreement No 769975.
The relevant contents of this publication are the sole responsibility of the authors (Lolich and Timonen) and can in no way be taken to reflect the views of the European Commission. We would like to express our gratitude to all focus groups and participants and to our colleagues in the SoCaTel project.
Virpi Timonen thanks for the support of the Ministry of Education of the Republic of Korea and the National Research Foundation of Korea (NRF-2016S1A3A2924563).
Acknowledgements:
We acknowledge the contribution of Austin Warters and Anne McDonald of the HSE to the organisation and conduct of the fieldwork.
Disclosure statement: The authors have no conflict of interest to disclose