Consumer versus citizen theories of agency: useful when highlighting a theoretical distinction

Citizenship: agency through discussion, dialogue, relationship building and trust

The notion of the ‘citizen’ can be traced back to ancient Athens, where matters of the day were discussed and deliberated over in public forums (Powell et al., Reference Powell, Doheny, Greener, Mills, Simmons, Powell and Greener2009). In contrast to the isolated consumer where information-giving and agency is framed as an individual concern, the citizen draws on the relational elements of discussion, deliberation and exchanging of views. As Silverstein (Reference Silverstein2016: 517) states: ‘Human beings are agents. We can deliberate about what to do – reflecting on our desires and our circumstances – and then act on the basis of that deliberation.’

Empowering the citizen is contingent upon the relationships that are established during discussion, deliberation and an exchange of views. The primary reason to support furthering discussion, deliberation and exchanging views is the proposition by Herbert Simon (Reference Simon1955, Reference Simon1956) in his theory of bounded rationality. Simon proposed that agency is dependent on, and conditioned by, the individual and the wider structural context within which a decision takes place (Collet, Reference Collet2009). Such issues are complex. Simon's ‘bounded rationality’, and other theories of agency based on it (e.g. Bourdieu's theory of ‘habitus’ ([1990] 1999) and Giddens’ (Reference Giddens1984) ‘structuration’ theory), are overarching frameworks about individual behaviour. However, they do not conceptualise the means by which active agency is enabled. Jurgen Habermas’ (Reference Habermas1992a, Reference Habermas1992b) theory of ‘communicative action’ fills this gap and proposes how and why acts of deliberation and discussion can be conceptualised as a means of enabling understanding, empowerment and agency.

Habermas (Reference Habermas1992a, Reference Habermas1992b) acknowledges the complexity in the interaction between the social world, individual and structural contexts. On this basis, he proposes that agents will have a set of different, varying and incommensurable standards of choice. An agent must be able to understand their place within wider socio-political structures if they are to settle on a preferable course of action. The meaning and consequences of alternatives must be fully understood in order to come to an instrumental action and make a decision. It is this meaning behind an instrumental act that Habermas (Reference Habermas1992a, Reference Habermas1992b) refers to as a ‘noninstrumental action type’ (Heath, Reference Heath2001: 17).

While in isolation information is a consumerist tool, it is grounded in words, sentences and language. Words and sentences are critical to shaping the non-instrumental meaning that lies behind instrumental action. Linguistic structures and speech are the crux of human action, how humans rationalise action and are therefore intrinsic to validity claims (Honneth and Joas, Reference Honneth, Joas, Honneth and Joas1991). In other words, Habermas (Reference Habermas1992a, Reference Habermas1992b) regards agency to be based on conveying meaning from information, emotional expression, establishing social relationships, and utilising dialogue to discuss and exchange views (Heath, Reference Heath2001).

The rationale of Habermas’ communicative action underpins how agency, action and empowerment are understood in related fields such as higher education and global citizenship (Bosio, Reference Bosio2021). Paulo Freire, a critical pedagogical theorist, used the term ‘conscientization’ as a means of highlighting why a critical understanding of one's position in social reality through reflection is a critical precursor for action (Freire, Reference Freire1970). Originally based on critically exploring adult literacy programmes and processes, Freire's ideas have become a central pillar of critical pedagogy theory in higher education and global citizenship – particularly in light of what many regard as the hegemony of neo-liberal approaches to learning which directly undermine critical thought through reflection and dialogue (Giroux, Reference Giroux2014). In light of these theoretical positions, what can be learnt from existing empirical literature in respect of what triggers active agency for older people in the context of health, social care and housing that has a core care function?

Health and social care

Greener and Mannion (Reference Greener and Mannion2009) undertook an ethnographic study on the implementation of choice policies when they were first introduced in an English NHS Trust. One key finding concerning the role of information on providers was that choices and referral patterns remained largely unchanged despite the greater availability of performance-related data (Greener and Mannion, Reference Greener and Mannion2009). There is some evidence that less-formal information sources have a role in older people's choices of provider – such as stories in local newspapers/media, the accessibility of car parking and feedback from family members (Harding et al., Reference Harding, Sanders, Medina Lara, Van Teijlingen, Wood, Galpin, Baron, Crowe and Sharma2014). There is evidence that older people view information-giving as part of a person-centred and respectful caring relationship when making or being involved in care and treatment decisions. Yet, this does not necessarily mean older people wish to be active agents in decision-making about treatment or care (Bastiaens et al., Reference Bastiaens, Van Royen, Pavlic, Raposo and Baker2007).

While age may increase the need to access health services, it is also associated with diminished information-seeking skills. The least healthy older people tend to be the least well equipped to use information resources (Gilleard and Higgs, Reference Gilleard and Higgs2017), particularly in the context of cognitive decline (Meinow et al., Reference Meinow, Parker and Thorslund2011). In addition, others have found that age is associated with a decreased desire to engage with information (Duggan and Bates, Reference Duggan and Bates2008). In contrast, there is evidence that older people desire higher-quality information during the dementia journey, though in the context of a paucity of information and wider services to support people living with dementia (Behrman et al., Reference Behrman, Wilkinson, Lloyd and Vincent2017; Kupeli et al., Reference Kupeli, Sampson, Leavey, Harrington, Davis, Candy, King, Nazareth, Jones and Moore2019).

Given information asymmetries, patients may well be flawed consumers, but existing evidence suggests that older people may also tend to be unwilling consumers. If active agency in older people tends not to be based on the provision of information, is it triggered by communicative action instead? Interestingly, there is little evidence to support that communicative action triggers active agency either – though there is evidence that engaging in discussion is desirable as part of a respectful and person-centred clinician–patient relationship. Perhaps it is worth reconsidering what or how active agency is conceptualised, and to redraw the boundary to somewhere closer to shared decision-making.

What about the role of information and active agency in social care? In the UK, a fairly substantial market exists in social care on account of the personalisation agenda – which is care provided in the community (often in the home, or care/nursing homes) outside formal health settings such as hospitals. If viable choices are on offer, what evidence is there for active agency and what is this triggered by? A common source of support for social care self-funders (those not in receipt of state support) has been found to be personal experiences, family and friends (Baxter et al., Reference Baxter, Heavey and Birks2020). As such, experiential and subjective experiences tend to be trusted sources of information (Turnpenny and Beadle-Brown, Reference Turnpenny and Beadle-Brown2014). However, making services contingent on accessing information is likely to extend inequalities because it requires high levels of skill, energy and resources in order to gather it (Stevens et al., Reference Stevens, Manthorpe, Glendinning, Moran, Jacobs, Challis, Wilberforce, Fernandez, Knapp, Jones and Netten2011), let alone considering what information is available. In a care home context, Moore (Reference Moore2020) expresses a concern that information tends to be imperfect and of limited relevance, which may allow providers to engage in opportunistic money-making behaviours that are not always consistent with quality care.

Consistent recommendations on older people's information needs concerning social care mitigates some of these issues and points to the need for information resources to be located in a central place, that information needs to be imparted early and that support is provided to discuss options (Baxter et al., Reference Baxter, Glendinning and Clarke2008, Reference Baxter, Heavey and Birks2020; Baxter and Glendinning, Reference Baxter and Glendinning2011). In terms of content, Rodrigues (Reference Rodrigues2020) highlights that care is an experience and older people value information on the quality of caring relationships – something in relation to information-giving that lends itself to relational and deliberative citizenship-based approaches. In other words, accessing, considering and acting on information cannot be regarded as an independent consumer-driven activity, but based on relational engagements with others, involving discussion and deliberation. An example that has shown promise are services located in General Practice surgeries that provide ‘in-depth advice’ about benefits and debt. A study of such a service located in General Practice highlights impact on mental health and financial strain outcomes, although a minority of the sample were over 65 years of age (Woodhead et al., Reference Woodhead, Khondoker, Lomas and Raine2017). Evidence elsewhere suggests a similar Citizens’ Advice Bureau service provides significant social and financial return on investment (Cressey et al., Reference Cressey, Milner, Farr, Abercrombie and Jaynes2014). Advance care plans are written statements that set out preferences for care and provide another example for exploring information-giving concerning older people in the context of care. It is recommended practice for the development of an advance care plan to involve the provision of information to patients (or residents in care/nursing homes) and family carers. After looking at relevant information, a discussion is facilitated and care plans are based on a dialogue between patients or residents (if possible), family carers and health and/or social care professionals (Brazil et al., Reference Brazil, Carter, Cardwell, Clarke, Hudson, Froggatt, McLaughlin, Passmore and Kernohan2017; Rietjens et al., Reference Rietjens, Sudore, Connolly, van Delden, Drickamer, Droger, van der Heide, Heyland, Houttekier, Janssen, Orsi, Payne, Seymour, Jox and Korfage2017). There is some indication of beneficial outcomes relating to advance care planning (Weathers et al., Reference Weathers, O'Caoimh, Cornally, Fitzgerald, Kearns, Coffey, Daly, O'Sullivan, McGlade and Molloy2016), although some beneficial outcomes can be less clear (Brazil et al., Reference Brazil, Carter, Cardwell, Clarke, Hudson, Froggatt, McLaughlin, Passmore and Kernohan2017; Jimenez et al., Reference Jimenez, Tan, Virk, Low, Car and Yan Ho2018). However, initiating advance care plan conversations can be difficult and complex. While it is good practice for plans about care to be ongoing, it is common for formal and documented care plans to be initiated close to death – if at all (Brazil et al., Reference Brazil, Carter, Cardwell, Clarke, Hudson, Froggatt, McLaughlin, Passmore and Kernohan2017; Rietjens et al., Reference Rietjens, Sudore, Connolly, van Delden, Drickamer, Droger, van der Heide, Heyland, Houttekier, Janssen, Orsi, Payne, Seymour, Jox and Korfage2017). In addition, there are cultural issues to consider that relate to autonomy in a health and decision-making context. It may not always be culturally appropriate or regarded as a normative social practice to provide information and initiate conversations about care, or there may be cultural norms as to who is involved in these discussions. For example, physician authority and mostly male-driven family values dictate decision-making concerning advance care plans for patients in an East Asian context on account of how Confucianism privileges ‘filial piety’ (Cheng et al., Reference Cheng, Lin, Chan, Martina, Mori, Kim and Raymond2020). This context seems to place a boundary around and limit involvement in participative and communicative acts. It is a good example of a cultural dimension which gets scant attention in the literature.

Housing

In some ways it is difficult to distinguish housing from social care. Many of the decisions and choices concerning housing may well have a social care and even health-care remit. However, some make a distinction between health, social care and housing because decisions and active agency concerning housing are likely to be more familiar on account of a deeper, historical and cultural association with making choices (Mills, Reference Mills, Simmons, Powell and Greener2009). However, housing choices can be very challenging, emotive, personal and involve complex ‘push’ and ‘pull’ factors for older people – particularly if a person is finding it difficult to remain independent in their own home (Croucher et al., Reference Croucher, Hicks, Bevan and Sanderson2007; Harding et al., Reference Harding, Hean, Parker and Hemingway2020). Common alternatives to mainstream dwellings for older people in the UK are sheltered/extra-care housing, assisted living or other types of retirement developments. The collective term ‘specialist housing’ is used when referring to this type of housing (Harding et al., Reference Harding, Parker, Hean and Hemingway2018a). However, in the UK there is a chronic shortage of supply and for individuals there are often surprisingly few viable options (Harding et al., Reference Harding, Parker, Hean and Hemingway2018a, Reference Harding, Hean, Parker and Hemingway2020; Robinson and Wilson, Reference Robinson and Wilsonin press).

The provision of generic information to older people considering moving into specialist housing is best summarised by one participant in a realist evaluation study who stated ‘it can't be answered in an information pack … it's a difficult problem which you can't really answer in this report’. The issue was ‘difficult’ (Harding et al., Reference Harding, Hean, Parker and Hemingway2020) and not adequately addressed by the provision of generic information. For this reason, participants in many different circumstances greatly valued and independently pursued discussion, deliberation and dialogue about their housing issue. Older people did not regard information-seeking as a one-off anonymous transaction. Instead, they thought empowerment and action should be based on relational engagements with others and after substantial discussion and deliberation – or the practices that are central to Habermas’ theory of communicative action. This type of support in the form of intensive face-to-face advice and advocacy with other related services has demonstrable impact for older people considered vulnerable (Burgess and Morrison, Reference Burgess and Morrison2016). However, Harding et al. (Reference Harding, Hean, Parker and Hemingway2020) highlight how more intensive support would also clearly benefit those with limited economic resources who may not have been considered vulnerable.

Contrasting theory and evidence

In theory, and often in practice, information tends to be defined as generic material, and not bespoke or individualised in any way. This definition and its application are very significant because there is little or no evidence that information alone triggers active agency for older people in regard to their health, social care or housing. Information-giving in these areas is not regarded by older people as an independent, anonymous or economic activity. There is consistent evidence that discussion, deliberation and dialogue – or the practices associated with Habermas’ theory of communicative action – are desirable to older people when seeking to become informed. Active agency for older people should be a supported process. This may involve engaging with generic information, but should almost always involve discussion, deliberation and dialogue in order to process information as a means for older people to make or shape decisions about care. At the very least, current evidence moves the consumer versus citizen theoretical divide from being a distinction to a continuum. However, it is important to acknowledge the role of context, and that more research is needed to understand these issues better.

Areas for further research, consideration and reflection

There is surprisingly limited evidence that communicative practices have beneficial outcomes beyond being a desirable process. This is particularly interesting given its desirability in theoretical and empirical literature. The advance care planning literature highlights interesting issues around how communicative approaches are likely to have a cultural and wider contextual dimension. It needs to be acknowledged that communicative approaches will likely also highlight inequalities. Where access to information has been shown to be contingent on social networks, skill, energy and resources, there is little evidence to suggest that communicative approaches will not also privilege the more able, skilled and resourced. However, this could be mitigated by implementing more substantive communicative approaches. One example is the substantial involvement reflected in advocacy provision, although the act of advocating on behalf of someone seems to go beyond the boundaries of what might be considered a communicative act between an older person and their advocate. Yet, in-depth advice and advocacy around benefits, debt, housing and other welfare issues have fairly consistent beneficial outcomes.

There is a clear need for more communicative forms of support to be implemented in practice across a broad spectrum of health, social care, housing and other related areas, and for this to be evaluated. This is particularly urgent in instances where cognitive abilities and health decrease (Meinow et al., Reference Meinow, Parker and Thorslund2011; Gilleard and Higgs, Reference Gilleard and Higgs2017), such as information-giving and support at the point of and after a dementia diagnosis (Behrman et al., Reference Behrman, Wilkinson, Lloyd and Vincent2017; Kupeli et al., Reference Kupeli, Sampson, Leavey, Harrington, Davis, Candy, King, Nazareth, Jones and Moore2019). Further research would benefit from developing theory in order to advance what is a fairly underdeveloped field. Realist methodology is an approach where theory development is key, and is a research approach recommended for further use in this field (Harding et al., Reference Harding, Parker, Hean and Hemingway2018b). The central aim of realist methodology in reviews of literature and empirical evaluation is to develop and refine theory in respect of how and why programmes work (or do not work), for whom and in what circumstances (Emmel et al., Reference Emmel, Greenhalgh, Manzano, Monaghan and Dalkin2018). Unpicking this level of detail and nuance is particularly relevant given concerns that even communicative approaches may favour the more able, highlight inequalities, and may have a cultural and wider contextual dimension. Comparative evaluations between consumerist and communicative approaches to information-giving are also welcome in order to highlight differences.

The increasing movement to online information provision is concerning given the digital divide further exacerbates the issues initially raised by Gilleard and Higgs (Reference Gilleard and Higgs1998) in respect of consumerism and discussed here in the context of information-giving. Research consistently finds that the least healthy, resourced and old older people (i.e. those who require access to support, information and services the most) are disadvantaged by the digital divide. In this context, another consideration is the longer-term effect of how the COVID-19 pandemic will impact on formal health and welfare service configuration. Many services have transitioned to operating either partially or fully remotely. On this basis, finding ways of fully engaging older people in the context of information-giving involving technology, and in a manner that is communicative and impactful, is particularly pressing. This forum article is largely reflective of Gilleard and Higgs’ (Reference Gilleard and Higgs1998) position from over two decades ago. A reflection with which to end this forum article is to consider the reasons why information-based services have such a central role in access and engaging with health and care provision. Underlying issues with the service that provided generic information to older people considering specialist housing is a real-world example of the theoretical positions discussed in this forum article. In this case study, the provision of mostly predetermined information seemed to be prioritised over more communicative approaches because it was financially cheaper and produced a greater quantity of quicker engagements better aligned to government funding targets (Harding et al., Reference Harding, Hean, Parker and Hemingway2020). In this case, there was a clear dichotomy between efficiency, in the context of economics, and effectiveness for the recipients of support (or at least what was perceived to be desirable or better). Generic and predetermined information will invariably be financially cheaper as it does not require significant human input after it is developed. Unlike communicative approaches, there is less or no ongoing activity or cost. Cheap and quick may be desirable for funders and service providers, where notions of quantity may blur the pursuit of quality. This is a highly unsatisfactory state of affairs. There are significant and underlying assumptions about the role of information in respect of active agency that require challenging at political, commissioning and service design levels.