Introduction
Well-being among older persons is an issue of increasing interest and pertinence. With a rapidly ageing global population comes an increased focus on how to age well, evidenced by the influence of the ‘successful ageing’ paradigm (Lamb et al., Reference Lamb, Robbins-Ruszkowski, Corwin, Lamb, Robbins-Ruszkowski and Corwin2017). This discourse typically centres on the ‘younger old’. The ideals of successful ageing rarely include a nursing home, focusing instead on independence and autonomy. As care needs increase, for many oldest old a move into a nursing home may be the only viable option (Szczepura, Reference Szczepura2011). The move is often accompanied by mixed emotions, and under any circumstance heralds a major change in the older person's life (Wiersma and Dupuis, Reference Wiersma and Dupuis2010; Löfqvist et al., Reference Löfqvist, Granbom, Himmelsbach, Iwarsson, Oswald and Haak2013; Pocock et al., Reference Pocock, MacKichan, Deibel, Mills and Wye2021). In many ways, the nursing home represents the antithesis of ageing well as it is defined in many Western cultures, where becoming dependent on others is an often-dreaded fate (Agich, Reference Agich2003). Despite much critique of successful ageing (Moody, Reference Moody and Sokolovsky2009; Katz and Calasanti, Reference Katz and Calasanti2015; Martinson and Berridge, Reference Martinson and Berridge2015; Rubinstein and de Medeiros, Reference Rubinstein and de Medeiros2015; Lamb et al., Reference Lamb, Robbins-Ruszkowski, Corwin, Lamb, Robbins-Ruszkowski and Corwin2017; Corwin, Reference Corwin2020), well-being in nursing homes has largely been investigated from the implicit assumptions of this paradigm. Well-being is also typically investigated as a measurable concept, e.g. under the quality of life concept (Bowling, Reference Bowling2005; Mollenkopf and Walker, Reference Mollenkopf and Walker2007; Van Malderen et al., Reference Van Malderen, De Vriendt, Mets and Gorus2016), as subjective well-being (see e.g. Shmotkin et al., Reference Shmotkin, Eyal, Shorek, Shrira and Blumstein2013) or as adjustment to ageing (Von Humboldt and Leal, Reference Von Humboldt and Leal2015). Other approaches have considered well-being from psychological and spiritual perspectives, e.g. through the theory of ‘gerotranscendence’ (Tornstam, Reference Tornstam1997) and ‘existential beliefs’ (Araújo et al., Reference Araújo, Ribeiro and Paul2017). A recent review approached well-being in nursing homes from the holistic concept of ‘thriving’ (Baxter et al., Reference Baxter, Corneliusson, Björk, Kloos and Edvardsson2021). However, no review to date has attempted to synthesise findings on well-being for oldest old nursing home residents through an existential well-being lens.
As the global population ages, living longer than ever before, many more people will require care in the future. It is therefore crucial that we understand the complexities of well-being in old age, and how care is experienced, to ensure that well-being and dignity are at the heart of future care solutions.
In this article, we highlight lived experiences of existential well-being among oldest old nursing home residents and the ways in which these experiences are shaped by the institutional environment. Existential well-being is a phenomenological approach that understands well-being as ‘a pre-reflective experience of a sense of being deeply at home in both non-literal and literal ways’ (Galvin, Reference Galvin and Galvin2018: 2). By applying the meta-ethnographic method (Noblit and Hare, Reference Noblit and Hare1988) to existing literature, we interpret findings on well-being through the existential well-being framework of Galvin and Todres (Reference Galvin and Todres2013). The ‘at-homeness’ of well-being makes the nursing home doubly compelling because the institution is at once home and not-home. Here, this tension serves to highlight some of the barriers to achieving well-being for oldest old nursing home residents.
Background
For a few decades now, the ‘successful ageing paradigm’ has been hegemonic in defining the parameters of the good life in old age (Lamb et al., Reference Lamb, Robbins-Ruszkowski, Corwin, Lamb, Robbins-Ruszkowski and Corwin2017). The basic tenets of this model are that independence, activeness, productivity and engagement should continue well beyond retirement. For many ‘young old’ (60+ years), these ideals are both desirable and attainable. However, this stretching out of mid-life is only possible for so long. For the oldest old, usually defined as 85+ years, the ambitions of successful ageing are largely out of reach once physical and/or cognitive abilities start to decline. Advanced age brings with it a number of challenges – frailty, chronic illness, reduced mobility, disability and social vulnerabilities – that make many older people care-dependent. As such, life in the ‘fourth age’, as very old age is sometimes called, is in many ways construed as dichotomous to successful ageing (Gilleard and Higgs, Reference Gilleard and Higgs2010; Pickard, Reference Pickard, Clack and Paule2019).
Nursing homes, especially, are associated with frailty, decrepitude and abjection in the social imaginary, ‘they represent a fate to be resisted, if not avoided altogether, a fate worse than death’ (Higgs and Gilleard, Reference Higgs and Gilleard2021: 2, see also Agich, Reference Agich2003). Life in a nursing home contrasts in almost all aspects with the successful ageing ideal. It connotes dependency, immobility, passivity and disengagement. These are all modes of being that do not register as conducive to happiness or successful personhood in the dominant neoliberal imaginary (Leget, Reference Leget2017). It is thus necessary to probe the ways in which well-being can be fostered in circumstances that are, to many, suggestive of the unravelling of personhood (Lamb, Reference Lamb2014; Degnen, Reference Degnen2018).
Nursing homes are public or private institutions that provide 24-hour live-in care to persons, usually older, who can no longer live independently due to complex health needs, disabilities and other vulnerabilities. It is important to acknowledge that nursing home populations, staffing practices and the complexity of care offered is heterogenous across countries (Sanford et al., Reference Sanford, Orrell, Tolson, Abbatecola, Arai, Bauer, Cruz-Jentoft, Dong, Ga, Goel, Hajjar, Holmerova, Katz, Koopmans, Rolland, Visvanathan, Woo, Morley and Vellas2015). In the 1950s, British sociologist Peter Townsend conducted a large-scale study of British nursing homes, in which he found the majority to be of poor standard, resulting in an influential critique of the institutionalised care provision of the time (Townsend, Reference Townsend1962). In the last few decades, the culture change movement has gained pace, with a growing trend towards transforming nursing homes from an institutional medical model focused on task-oriented care to a person-centred care model (Koren, Reference Koren2010; Brownie and Nancarrow, Reference Brownie and Nancarrow2013; Zimmerman et al., Reference Zimmerman, Shier and Saliba2014).
The core principle of person-centred care is to put the whole person and their quality of life at the heart of their care by empowering the resident to make their own decisions. The key words here are choice, autonomy and empowerment. The person-centred approach aligns with the values of successful ageing, and attempts, perhaps indirectly, to extend them into very old age. Nursing homes are thus moving away from the ‘total institution’ model (Goffman, Reference Goffman2017) of the past, in order to provide home-like environments that foster well-being.
Well-being for oldest old nursing home residents, however, does not necessarily follow the same contours as that which underpins the person-centred and successful ageing models. The transition from third to fourth age is marked by a deterioration in health, and therefore does not hinge inevitably on chronological age (Kafkova, Reference Kafkova2016). Indeed, it can be said that a decrease in physical and/or cognitive well-being is one of the markers of the transition from the third to fourth age (Baltes and Smith, Reference Baltes and Smith2003; Gilleard and Higgs, Reference Gilleard and Higgs2011; Kafkova, Reference Kafkova2016). This in itself produces a paradox for the potential for well-being in very old age. As Galvin (Reference Galvin and Galvin2018: 2) points out, well-being has too often been seen as an either–or antipode to suffering. Here, we aim to nuance these understandings in order to consider how well-being might be fostered alongside the suffering of the fourth age. Well-being is often sectioned into discrete categories of physical well-being, social well-being, emotional well-being, etc. The dwelling-mobility framework attempts to overcome the limitations of these distinctions by grasping the structures that make all kinds of well-being possible (Galvin, Reference Galvin and Galvin2018). From the perspective of successful ageing, these categories have particular cultural values attached: social well-being (activeness, productivity), physical well-being (mobility), emotional well-being (independence), mental well-being (autonomy, choice). These understandings mirror a particular cultural understanding of what it means to be a person. It is, therefore, important to highlight how the ideal of successful ageing impinges on norms and beliefs around well-being in ageing. Steeped in neoliberal ideas of personhood (Lamb, Reference Lamb2014; Lamb et al., Reference Lamb, Robbins-Ruszkowski, Corwin, Lamb, Robbins-Ruszkowski and Corwin2017; Degnen, Reference Degnen2018; Pickard, Reference Pickard, Clack and Paule2019), successful ageing stands as the pinnacle of the good life in old age and forms the backdrop against which very old age is measured. Viewed through the lens of successful ageing, the realities of very old age do not measure up well. It is important to highlight that these are cultural constructs of well-being, not objective, independently existing natural phenomena of well-being. By drawing attention to the ways in which culture shapes our understandings of well-being, we are able to open up to new possibilities which are better suited to the realities of the fourth age and its vicissitudes.
Method
The aim of this review was to explore how well-being (or its absence) is experienced by the oldest old as it is produced (or impeded) in care relations within institutional settings. For this purpose, we use meta-ethnography, an interpretive method first developed by Noblit and Hare (Reference Noblit and Hare1988). Where other types of reviews aggregate findings, the purpose of an interpretive review is not to be exhaustive, but rather to reinterpret conceptual findings to create new insights and allow the reader to see the issue or topic from a new perspective (Noblit and Hare, Reference Noblit and Hare1988; Eisenhart, Reference Eisenhart1998; Campbell et al., Reference Campbell, Pound, Morgan, Daker-White, Britten, Pill, Yardley, Pope and Donovan2011; France et al., Reference France, Ring, Thomas, Noyes, Maxwell and Jepson2014; Noblit, Reference Noblit, Urrieta and Noblit2018). This is achieved by translating the studies into each other and synthesising the findings.
The method proceeds through seven iterative phases: (a) getting started (defining your topic of interest); (b) deciding what is relevant to the initial interest (the search for relevant literature); (c) reading the studies (repeated reading is required); (d) determining how the studies are related (creating a list of key ‘metaphors’, or concepts, from each study); (e) translating the studies into one another (the concepts from each study are then compared and mutually interpreted); (f) synthesising translations (translations are synthesised to reach new interpretations); and (g) expressing the synthesis (communicating the findings in an appropriate format to the intended audience).
The concepts may be reciprocal or refutational, meaning that the findings of each study either support or contradict those of other studies. Concepts may then be drawn into a ‘line-of-argument’ synthesis, where new interpretations are offered (France et al., Reference France, Ring, Thomas, Noyes, Maxwell and Jepson2014). The result should reveal something greater than the sum of its parts (Noblit and Hare, Reference Noblit and Hare1988: 28).
Eligibility criteria
With the assistance of a research librarian, a systematic literature search was conducted between August and October 2020. The following databases were searched: PubMed, Scopus, CINAHL and Sociological Abstracts. Various combinations of search terms were used (see Table 1).
Search terms
The searches returned a total of 3,198 results; 3,125 were excluded based on title and/or abstract. Of the remaining 73 articles, 42 were excluded on full-text screening. Thirty-one studies were then subjected to a CASP (Critical Appraisal Skills Program) assessment conducted independently by EJB and MGK. Critical appraisal prior to reading the studies (the third phase) is not recommended by Noblit and Hare (Reference Noblit and Hare1988), but we followed the recommendation of Campbell et al. (Reference Campbell, Pound, Morgan, Daker-White, Britten, Pill, Yardley, Pope and Donovan2011) to use it as a tool for close reading and for facilitating a discussion as to the suitability of each study within the research team. Following a comparison of CASP results, 20 studies were finally included in this review. Included studies had to deal in some way with well-being as a lived experience. For this reason, only studies with a phenomenological, hermeneutic or ethnographic methodology were included. While not essential according to Noblit and Hare (Reference Noblit and Hare1988), selecting studies with similar methodological approaches allowed for a more even comparison. Studies had to be based on nursing homes, and they had to in some way consider the relationship between resident and care-giver from the resident's perspective. It was not always possible to find studies focused only on the oldest old, but only studies with a preponderance of older participants were included. Only studies from 2005 onwards were included in order to reflect contemporary experiences.
In addition to producing a synthesised interpretation of existing studies, the purpose of a meta-ethnography is also to make a contribution to the development of theory (Noblit, Reference Noblit, Urrieta and Noblit2018; France et al., Reference France, Cunningham, Ring, Lewin and Noyes2019). Therefore, only ‘conceptually rich’ articles were included (France et al., Reference France, Cunningham, Ring, Lewin and Noyes2019). This means that the articles included in this review were selected for their ability to expand our understanding of how well-being for the oldest old is (not) constituted in nursing homes.
Following the selection of studies, a meta-ethnography then proceeds in a hermeneutic manner by reading and re-reading the studies multiple times, extracting the main concepts (or metaphors) and then considering the relationship between these studies. We did so first by making a list of concepts from each study, and then coding the studies in NVivo as a way of translating the studies into each other. Following this step, concepts were synthesised in a higher-order interpretation. ‘Concepts’ here is in line with the definition of France et al. (Reference France, Cunningham, Ring, Lewin and Noyes2019: 453) as something that holds ‘analytical or conceptual power, unlike more descriptive themes’.
Theoretical underpinnings
In broad terms, this meta-ethnography employs a lines-of-argument approach to the synthesis of studies, which attempts to use ‘theory to ferret out the unapparent import of things’ both within each study and across studies in order to ‘discover a whole among the parts’ (Noblit and Hare, Reference Noblit and Hare1988: 63). An interpretive approach seeks to make the implicit explicit, by revealing taken-for-granted assumptions (Noblit, Reference Noblit, Urrieta and Noblit2018). We approached the synthesis from the principle that in meta-ethnography both theory and critique are integral to the translation (Noblit, Reference Noblit, Urrieta and Noblit2018; Urrieta, Reference Urrieta, Urrieta and Noblit2018). By way of theory, we apply Galvin and Todres' (Reference Galvin and Todres2013) framework for existential well-being and humanising care to draw out the lived experiences of well-being as well as to understand the underlying structures of well-being. In doing so, we work from the assumption that well-being means different things to different people, but also has some common underlying features within the intertwining domains of embodiment, mood, identity, spatiality, temporality and intersubjectivity (Galvin and Todres, Reference Galvin and Todres2013). This is not the kind of well-being that can be measured on an objective scale. Galvin and Todres (Reference Galvin and Todres2013) posit that the essence of well-being is a combination of a sense of (metaphorical, literal and existential) home and adventure. They term this combination ‘dwelling-mobility’ and argue that well-being is structured by these two modes of being. Mobility refers to a sense of adventure and possibility, the feeling that one can be called into something new. Dwelling, on the other hand, refers to what Heidegger termed Gelassenheit or a ‘letting-be-ness’, meaning that one finds peace with what is given. In dwelling there is an acceptance of what is, even of that which is painful. In this definition then, suffering does not occlude the possibility for well-being. Even in situations of misery, a possibility for well-being exists. That is to say that well-being and suffering are not polar opposites, rather they exist in flux on a continuum.
Furthermore, Galvin and Todres (Reference Galvin and Todres2013) also posit that care practices may be either humanising or dehumanising. This means that some ways of caring have the potential to foster well-being, while other more reductionistic approaches to care may detract from well-being. To get a whole picture, then, of well-being in nursing homes, it is necessary to consider both the opportunities for dwelling-mobility, as well as the care practices in which these domains are bound up.
Results
Our findings are organised across the following five themes: (a) institutionalisation as both restrictive and liberating; (b) reciprocity and mattering: the importance of being seen; (c) the need for kinship and the problem of ruptured sociality; (d) rethinking agency: situated, delegated and supported; and (e) lowered expectations: receiving care is not a passive act. These themes represent varied but interlocking aspects of the lived experiences of existential well-being in nursing home care for the oldest old. They also highlight the ambiguity and nuance of such lived experiences, which are rarely wholly negative nor wholly positive, but complex and dynamic, and always context specific, underlining the fact that very old age, like any other lifestage, is multiple.
Table 2 gives an overview of the included studies.
Included studies
Note: 1. The age range is given when the mean age is not available.
Institutionalisation as both restrictive and liberating
Institutionalisation appears as a theme to some extent across all the studies. Its impact on well-being is complex. Several studies showed the tension between the frustration of being institutionalised, on the one hand, and the relief of having care available on the other (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Westin and Danielson, Reference Westin and Danielson2007; Minney and Ranzijn, Reference Minney and Ranzijn2016). This tension exemplifies the spectrum of humanising and dehumanising care, a term used by Galvin and Todres (Reference Galvin and Todres2013) to signify that the way care is delivered can be experienced by the recipient on a range from holistic to reductionistic.
Our analysis points to a problematic we call ‘failing bodies in failing systems’. This concept embodies the disparity between the needs of the declining older body and the rigidity of bureaucratic systems and can be seen across a number of studies (Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007; Anderberg and Berglund, Reference Anderberg and Berglund2010; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Brea-Rivero, Gómez-Pérez and Fernández-de-las-Peñas2014, Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Velarde-García, Martínez-Piedrola and Pérez-De-Heredia2016; Bollig et al., Reference Bollig, Gjengedal and Rosland2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018; Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018).Nursing home systems are often ill-equipped to cope with the complex demands placed on them, because they are ‘situated betwixt and between a home, hospital, hotel and hospice’ (Bland, Reference Bland2007: 942). The widening gap between the good intentions to care for failing bodies and the reality of the everyday practices of a failing system is also captured in the metaphor of ‘craquelures’ (Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018). Precisely this betwixt-and-between nature of nursing homes is brought to the fore by the idea of well-being as at-homeness. While nursing homes are institutions that require some level of bureaucracy to function, they are also the home of their residents. If well-being is a deep sense of at-homeness, but one's literal home is in some ways alienating, then it follows that well-being is already in jeopardy from the outset.
Entering into nursing home care, residents undergo a process of resocialisation, in which they must adapt to a new environment, and learn new rules and routines. While some feel the nursing home is a relief, even an improvement on before (Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Minney and Ranzijn, Reference Minney and Ranzijn2016), the move from the private home into the more public, shared space of a nursing home is challenging for many (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007; Westin and Danielson, Reference Westin and Danielson2007; Anderberg and Berglund, Reference Anderberg and Berglund2010; Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). Life in a nursing home can be very regimented and regulated (Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014). Residents describe themselves as ‘slaves to the routine’ (Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). Some feel imprisoned (Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Velarde-García, Martínez-Piedrola and Pérez-De-Heredia2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018), and many long for their old homes (Bland, Reference Bland2007; Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Velarde-García, Martínez-Piedrola and Pérez-De-Heredia2016). This can be taken to represent a deeper longing for a sense of being-at-home in the world, or a sense of existential well-being. In a nursing home there is a risk of becoming lost in the crowd (Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007), and of being stripped of one's adult status (Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Velarde-García, Martínez-Piedrola and Pérez-De-Heredia2016). The demand to conform to institutional life can take a toll on the residents' sense of self. When these demands become excessive it may lead to what Galvin and Todres (Reference Galvin and Todres2013) call ‘homogenization’, a dehumanising aspect of care, in which the individual's sense of unique identity is diminished.
A consistent feature of institutionalisation was the tension between residents' needs for attention and the tight schedules of the staff. Residents need the attention of staff for practical assistance, but they also crave affective attention. Many of the studies (Bland, Reference Bland2007; Westin and Danielson, Reference Westin and Danielson2007; Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Taylor et al., Reference Taylor, Sims and Haines2014; Bollig et al., Reference Bollig, Gjengedal and Rosland2016; Høy et al., Reference Høy, Lillestø, Slettebø, Sæteren, Heggestad, Caspari, Aasgaard, Lohne, Rehnsfeldt, Råholm, Lindwall and Nåden2016; Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018) make reference to the staff's lack of time, most without specifying why. Sometimes laundry took priority over a resident in pain (Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018). Sometimes the system insists on written individualised care plans, even if these are rarely put into practice (Bland, Reference Bland2007). The system thus enables a double failing – it forces staff to produce paperwork that ultimately does not benefit the resident, meanwhile such production reduces the ability of staff to respond to the resident in moments of need. While dehumanising care practices may lead to homogenisation of residents, this is also true of staff. Excessive administrative demands may concentrate staff energy and attention in the ‘wrong’ places, leading to staff disengagement (Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018), and give residents the impression that staff are more interested in getting on with routine work (Westin and Danielson, Reference Westin and Danielson2007).
Inconsistency across staff was also considered an impediment to developing a sense of homeliness and trust because having to constantly relate to new staff members causes confusion and uncertainty (Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). Beyond these issues is the sense that sometimes care staff lack either the ability or the inclination to care. Numerous examples of negligence appear across the studies: being berated by staff for soiling oneself (Bland, Reference Bland2007), being handled in painful ways (Taylor et al., Reference Taylor, Sims and Haines2014), having one's pants pulled down while still walking to the toilet (Bollig et al., Reference Bollig, Gjengedal and Rosland2016). Waiting itself is a source of suffering and causes residents to lose trust in their carers (Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Bollig et al., Reference Bollig, Gjengedal and Rosland2016; Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). These are examples of care failings and fall on the dehumanising end of the care spectrum, inducing in residents a sense of objectification, passivity, homogenisation, loss of meaning, dislocation and reductionist body (Galvin and Todres, Reference Galvin and Todres2013). In such regimes of care, well-being is impeded by the institutional gaze, which depersonalises the individual residents, reducing them to ‘tasks’ to be completed. Over time, residents come to embody the institutional order (Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018) and they give up asking for help (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006).
Reciprocity and mattering: the importance of being seen
A common theme underpinning all the included articles is the importance of being recognised as a person. Sometimes this is described as being seen (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Westin and Danielson, Reference Westin and Danielson2007; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Høy et al., Reference Høy, Lillestø, Slettebø, Sæteren, Heggestad, Caspari, Aasgaard, Lohne, Rehnsfeldt, Råholm, Lindwall and Nåden2016), other times it takes the form of having a voice, being listened to (Jonas-Simpson et al., Reference Jonas-Simpson, Mitchell, Fisher, Jones and Linscott2006). This may also be described as mattering. To be affirmed in the intersubjective relationship with carers makes the resident feel that they matter, that they are ‘a somebody’ (Westin and Danielson, Reference Westin and Danielson2007). The reciprocity of the intersubjective relationship – the exchange of conversation or a joke, the sharing of opinions or experiences, e.g. when staff share stories about their own families with residents (Bland, Reference Bland2007; Westin and Danielson, Reference Westin and Danielson2007) – makes residents feel part of a ‘fraternity’ (Westin and Danielson, Reference Westin and Danielson2007) and is fundamental to well-being. To be given a presence in someone else's life gives you life. Conversely, being ignored and left to one's own devices all day makes residents feel like they do not exist (Westin and Danielson, Reference Westin and Danielson2007; Anderberg and Berglund, Reference Anderberg and Berglund2010; Høy et al., Reference Høy, Lillestø, Slettebø, Sæteren, Heggestad, Caspari, Aasgaard, Lohne, Rehnsfeldt, Råholm, Lindwall and Nåden2016). Residents speak of feeling invisible (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Jonas-Simpson et al., Reference Jonas-Simpson, Mitchell, Fisher, Jones and Linscott2006) or describe their nursing home experience as ‘living in silence’ (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006).
Reciprocity in the care relation also makes it easier to ‘hand oneself over to be cared for’ (Anderberg and Berglund, Reference Anderberg and Berglund2010). Accepting that one is now dependent on care can be very challenging for many residents (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Anderberg and Berglund, Reference Anderberg and Berglund2010; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). In cultures staked on independence, becoming dependent can feel like a failing. When carers additionally treat residents with a lack of regard for the whole person, it can cause feelings of objectification (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). Sometimes this takes the form of ignoring the residents' needs for extended periods of time. Residents describe being left sitting in a wheelchair (Taylor et al., Reference Taylor, Sims and Haines2014; Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018), being put to bed before they are ready (Bollig et al., Reference Bollig, Gjengedal and Rosland2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018) and having breakfast in a wet nappy because the staff forgot to help them (Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). One resident feels invisible because the staff watch television during mealtimes and forget to feed her (Bollig et al., Reference Bollig, Gjengedal and Rosland2014). Another feels that her loss of sight and hearing have made her sub-human to her carers (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006). Other times it borders on physical mistreatment in the form of rough handling (Taylor et al., Reference Taylor, Sims and Haines2014). These instances are pixels in a bigger picture of what it means to hand over one's body to institutional care. It entails a complex mix of trust, fear, humility and acceptance.
The intersubjective presence that takes place when a carer offers their full attention to a resident is critical in nursing home care, where residents are often isolated from the outside community (Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Høy et al., Reference Høy, Lillestø, Slettebø, Sæteren, Heggestad, Caspari, Aasgaard, Lohne, Rehnsfeldt, Råholm, Lindwall and Nåden2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). Feelings of isolation and alienation must be counteracted in order to foster well-being (Galvin and Todres, Reference Galvin and Todres2013). One of the ways in which staff make themselves present to residents is through listening. Residents long to be ‘understood on their own terms’ (Anderberg and Berglund, Reference Anderberg and Berglund2010) and to be ‘seen as the persons they are’ (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006). Having the ability to speak openly about one's experiences creates an inner sense of freedom (Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018), which may help to counteract the despair of having one's exterior freedoms curtailed (lack of mobility, lack of independence). Being fully present, listening to and seeing the resident as the person they are creates a reciprocal space in which dwelling-mobility can be facilitated (Galvin and Todres, Reference Galvin and Todres2013).
Residents who feel listened to by their carers report feelings of contentment and well-being (Jonas-Simpson et al., Reference Jonas-Simpson, Mitchell, Fisher, Jones and Linscott2006). Being listened to nurtures a sense of connection, which in turn induces a sense of mattering. Mattering is still an important source of well-being in very old age, although the shape of it may change. While some residents accept that they are no longer central members of the social world outside the nursing home (Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014), for others this is difficult to come to terms with (Høy et al., Reference Høy, Lillestø, Slettebø, Sæteren, Heggestad, Caspari, Aasgaard, Lohne, Rehnsfeldt, Råholm, Lindwall and Nåden2016; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). Most, however, still crave connection, kinship and a sense of belonging, and direct this need towards the staff at the nursing home (Jonas-Simpson et al., Reference Jonas-Simpson, Mitchell, Fisher, Jones and Linscott2006; Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007; Westin and Danielson, Reference Westin and Danielson2007; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Minney and Ranzijn, Reference Minney and Ranzijn2016; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). It is the quality of these relationships that provides life with meaning for nursing home residents (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018).
The need for kinship and the problem of ruptured sociality
While residents often crave a connection with their carers, creating bonds of kinship and community with other residents is more complicated. In most instances, residents only move into nursing homes because of extensive care needs. This can make it difficult to establish and maintain bonds. The decline of others appears as a background theme across several studies (Jonas-Simpson et al., Reference Jonas-Simpson, Mitchell, Fisher, Jones and Linscott2006; Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007; Anderberg and Berglund, Reference Anderberg and Berglund2010; Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Brea-Rivero, Gómez-Pérez and Fernández-de-las-Peñas2014; Høy et al., Reference Høy, Lillestø, Slettebø, Sæteren, Heggestad, Caspari, Aasgaard, Lohne, Rehnsfeldt, Råholm, Lindwall and Nåden2016; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). Held together, however, this theme can help us foreground an important aspect of well-being in the nursing home context. Residents in these studies refer to the decrepitude of others as disturbing, unappealing, something to be avoided. Living with others in various states of physical and cognitive decline can take its toll on residents and cause them to withdraw from social interaction. Some experience the behaviours – such as messy eating, drooling, shouting and other forms of aggression or intimidation – of these co-residents as confronting and uncomfortable (Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007; Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). Further to creating a sense of unease, the decline of others is also representative of one's own potential decline (Anderberg and Berglund, Reference Anderberg and Berglund2010). Attempts to avoid stigma may also cause residents to distance themselves from those they deem to be less capable than themselves (Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Brea-Rivero, Gómez-Pérez and Fernández-de-las-Peñas2014). Palacios-Ceña et al. (Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Brea-Rivero, Gómez-Pérez and Fernández-de-las-Peñas2014) found that residents construct hierarchies of sorts, drawing boundaries around those considered more or less capable. This creates an interesting dilemma for the establishment of community. Broadly speaking, inclusion is essential to well-being (Galvin and Todres, Reference Galvin and Todres2013). While staff encourage residents to socialise with each other in good faith, the result may be decreased well-being (Hjaltadóttir and Gústafsdóttir, Reference Hjaltadóttir and Gústafsdóttir2007). For some residents, having the ability to create distance, and exclude some others, is a way of exercising agency to maintain their own sense of well-being. While the nursing home is by nature a social space, the lack of meaningful engagement with fellow residents may be a source of existential loneliness, in which social relations are experienced as ruptured (Galvin and Todres, Reference Galvin and Todres2013).
Rethinking agency: situated, delegated and supported
The concept of agency is seen in some form across all the studies; sometimes referred to in different ways: ‘self-determination’ (Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018), ‘freedom’ (Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018), ‘influence’ (Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018), ‘autonomy’ (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Bland, Reference Bland2007; Taylor et al., Reference Taylor, Sims and Haines2014) and ‘independence’ (Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Minney and Ranzijn, Reference Minney and Ranzijn2016). Caspari et al. (Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018) also refer to the ‘paternalism’ with which residents are often treated, when they are not consulted about their preferences.
Agency is considered to be central to well-being (Galvin and Todres, Reference Galvin and Todres2013). Paque et al. (Reference Paque, Bastiaens, Van Bogaert and Dilles2018), for example, conclude that self-determination is key to a good life. In most of the studies, agency pertains to the individual and also interweaves with individual competence (Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Brea-Rivero, Gómez-Pérez and Fernández-de-las-Peñas2014) and independence (Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). Becoming dependent on others for your everyday needs means relinquishing agency, often to much consternation. Agency here is commonly taken to mean that individuals act purposively to construct their own lifecourse. In other words, agency is free will, followed by deliberate action. This understanding of agency tends to preference activity. Caspari et al. (Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018) distinguish between ‘inner’ and ‘outer’ freedom. Inner freedom is one of volition, the freedom to want, for example, a walk outside. The outer freedom is one of practice, the ability to act on one's wish for a walk outside. Viewed through this lens, agency in very old age may indeed be severely curtailed.
However, agency may be broadened out to a more intersubjective space, where it may arise situationally, and it may be delegated (Pirhonen and Pietilä, Reference Pirhonen and Pietilä2018). Delegated agency does not mean ceding agency altogether, because it is a deliberate act of trust and consent to ask another person to act on one's behalf. The delegator retains decisional agency, while the delegate executes. What distinguishes delegated agency from restricted agency is that it is voluntarily entered into. It involves an acceptance that one's abilities to act, to do are more limited than they used to be. Care staff must strike a balance between letting residents do what they still can and helping with what they cannot (Bergland and Kirkevold, Reference Bergland and Kirkevold2006; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). Being able to do is a core element of finding well-being in one's identity. The identity dimension of dwelling-mobility is ‘layered continuity’ (Galvin and Todres, Reference Galvin and Todres2013). This is comprised of a sense of ‘I can’ (mobility) and ‘I am’ (dwelling). The ‘I am’ part of layered continuity is at its heart about ontological security. It is the feeling of being, not being this or that (different layers of identity constructs), but very simply just being. This is pertinent in very old age, when many of the layers of the identity one has constructed over the lifecourse start to fall away. The basic sense of ‘I am’, without having to be something, can be a source of comfort and well-being. Galvin and Todres (Reference Galvin and Todres2013: 91) call it a sense of ‘being at home with one's self’.
Delegated and supported agency is seen in some of the studies, e.g. when residents withdraw from communal to private spaces, allowing for a sense of independence in a situation otherwise characterised by dependence (Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013). Other studies showed that the scope of agency needed to be broadened but was often limited by institutional routines and regulations (Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). For example, some residents expressed a desire for more room to negotiate the terms of their care with staff (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006) or to have a say in setting the agenda (Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014). Delegated agency only works when the carer accepts the delegation. Having to ask for help and not receive it is a source of frustration and makes the loss of autonomy doubly hard to bear (Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018).
Lowered expectations: receiving care is not a passive act
As a result of the sometimes-dubious quality of care residents receive, residents simply came to expect less. Lowering expectations is in some instances described as a technique for achieving well-being (Bergland and Kirkevold, Reference Bergland and Kirkevold2006; Anderberg and Berglund, Reference Anderberg and Berglund2010). One resident describes being showered, dressed and placed in the wheelchair as ‘I have been so lucky’ (Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013). This sentiment is echoed across several studies (Jonas-Simpson et al., Reference Jonas-Simpson, Mitchell, Fisher, Jones and Linscott2006; Bland, Reference Bland2007; Anderberg and Berglund, Reference Anderberg and Berglund2010; Boelsma et al., Reference Boelsma, Baur, Woelders and Abma2014; Taylor et al., Reference Taylor, Sims and Haines2014; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018), where residents express much gratitude for very simple gestures, suggesting that they do not feel deserving of, or entitled to receive, this basic level of care. Many are afraid to speak up about the things they find difficult, uncomfortable or even painful, fearful that doing so could mean falling out of favour with the nurses and receiving even less care (Bland, Reference Bland2007; Anderberg and Berglund, Reference Anderberg and Berglund2010; Taylor et al., Reference Taylor, Sims and Haines2014; Bollig et al., Reference Bollig, Gjengedal and Rosland2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018; Pirhonen and Pietilä, Reference Pirhonen and Pietilä2018). However, there are residents who feel respected by staff even when having a bad day (Westin and Danielson, Reference Westin and Danielson2007). One study found that residents who asked for help risked being discriminated against not only by staff but by other residents too (Palacios-Ceña et al., Reference Palacios-Ceña, Gómez-Calero, Cachón-Pérez, Brea-Rivero, Gómez-Pérez and Fernández-de-las-Peñas2014).
There is a degree of emotion management that goes into the resident–carer relationship, where residents make an effort to be likeable, to engage with the staff, to not appear bothersome or demanding (Anderberg and Berglund, Reference Anderberg and Berglund2010; Nakrem et al., Reference Nakrem, Vinsnes, Harkless, Paulsen and Seim2013; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). In other words, they undertake a transformation of self in order to become ‘the good patient’ (Galvin and Todres, Reference Galvin and Todres2013). For example, residents strive to maintain outer composure in their dealings with their carers (Anderberg and Berglund, Reference Anderberg and Berglund2010). One resident in this study describes the process of adjusting themselves to the carers, learning to read their facial expressions, figuring out what they do and do not like, so that they know what to talk about and what not to talk about. This exemplifies how receiving care is not a passive act.
Attitude as an underlying determining factor for well-being is evident across several studies (Bergland and Kirkevold, Reference Bergland and Kirkevold2006; Bollig et al., Reference Bollig, Gjengedal and Rosland2016; Minney and Ranzijn, Reference Minney and Ranzijn2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). These studies argue that the resident's attitude towards their situation, the nursing home and their interpersonal relations was the basis upon which well-being could either emerge or be vanquished. This understanding seems premised on an assumption that attitude is a choice made by the individual. According to Bergland and Kirkevold (Reference Bergland and Kirkevold2006), attitude precedes the intersubjective relationship, which means that the resident has already made up their mind about whether they are going to thrive before entering into the nursing home and its social relations. The findings of Mondaca et al. (Reference Mondaca, Josephsson, Katz and Rosenberg2018), however, provide some nuance to this perspective, showing that attitudes emerge in, and are modulated through, the intersubjective encounter.
Discussion
Our findings show that the institutional nature of nursing homes poses a challenge to experiences of well-being, as regimented routines have the potential to induce dehumanising care practices. However, our findings also indicate that it does not have to be so. The structuring experience of dwelling-mobility can be engendered through humanising care practices that recognise the individual person, opens space for (intersubjective) agency, and preferences kinship and mattering over task-oriented care.
The central values of successful ageing – independence, autonomy, activeness, engagement, choice, control – are challenged in very old age, when decline often becomes inevitable and care needs take precedence (Lamb, Reference Lamb2014). However, as the studies included in this meta-ethnography demonstrate, these ideals still hold currency. Dependency especially is considered a defeat in hyper-individualised cultures (Agich, Reference Agich2003; Leget, Reference Leget2017) such as those included in this review. What we argue, through a reinterpretation of the findings, is that there is a more fundamental level at which well-being can be experienced, that does not rely on the achievement of these values. By considering well-being through the lens of existential well-being (Galvin and Todres, Reference Galvin and Todres2013), a more nuanced scope of well-being opens up. While successful ageing ideals continue to hold sway, what is also clear across all of the studies is the significance of safeguarding personhood in the intersubjective space. Kinship, mattering and being recognised as a person are at the very heart of well-being for the oldest old.
Lamb (Reference Lamb2014: 42) has argued that the successful ageing model comes at the cost of not coming to ‘meaningful terms with late-life changes, situations of (inter)dependence, possibilities of frailty and the condition of human transience’. This problematic is evident even in very old age, in the rejection of decline in both self and other. Thus, while healthy ageing may in itself be a noble goal, the successful ageing model curtails our ability to conceptualise well-being in frailty and serves to police the boundaries of personhood in very old age (Degnen, Reference Degnen2018). ‘Bad’ behaviours of fellow residents go beyond merely being unpleasant in the moment they occur. These residents are persons who have, to various extents, lost control of their own bodies. Symbolically, this may be interpreted as a kind of pollution of the shared environment; something to be avoided for fear of contamination (Douglas, Reference Douglas2003). The dulling of cognitive faculties, the leaking of bodily fluids and odours, the production of unpleasant sounds; these losses of control mark the boundaries of sociality and signify the unbecoming of the person. The ‘declining other’ has failed the standards for successful ageing (Lamb, Reference Lamb2014; Lamb et al., Reference Lamb, Robbins-Ruszkowski, Corwin, Lamb, Robbins-Ruszkowski and Corwin2017). To understand the ways in which decline is rendered meaningful, it is important to consider the ontological assumptions underpinning Western notions of personhood. The drawing of the boundary between ‘healthy old age’ and ‘decrepit old age’ here echoes the distinction between the third age and the fourth age in the literature (Laslett, Reference Laslett1996; Gilleard and Higgs, Reference Gilleard and Higgs2013; Kafkova, Reference Kafkova2016; Degnen, Reference Degnen2018). In the social imaginary, the crossing of this boundary marks the point of no return. In this borderland, personhood is at stake, and the side that you fall on determines whether your personhood is intact or called into question (Degnen, Reference Degnen2018: 153).
The aversion to others in decline causes ruptured bonds of sociality that put residents at risk of alienation. When interpersonal belonging is ruptured in this way, it puts the onus on care staff to hold open an intersubjective space in which the resident can experience kinship and belonging. According to Fredriksson (Reference Fredriksson1999), the presence of the nurse (or care staff) in the intersubjective relationship with the patient (or resident) can take two forms: ‘being with’ and ‘being there’. Being there entails the nurse attending to the patient's needs. The structure of being there is that of ‘question and answer’ in the sense that the patient has a need and the nurse a response. In contrast, being with is grounded in reciprocity. The structure of being with is that of ‘gift and invitation’. In this way of being present, the nurse (carer) offers their whole self, and if the patient accepts this gift, they reciprocate with an invitation to enter into their vulnerability. In this kind of presence, ‘nurse and patient are not only present to each other as roles, but in addition are present as whole persons’ (Fredriksson, Reference Fredriksson1999: 1171). This resonates with the findings of Høy et al. (Reference Høy, Lillestø, Slettebø, Sæteren, Heggestad, Caspari, Aasgaard, Lohne, Rehnsfeldt, Råholm, Lindwall and Nåden2016), who argue that while the weakened body is a potential threat to dignity, staff who are responsive to residents' vulnerability and who enter into a mutual effort of engagement can help to uphold dignity.
At times, the staff's ‘lack of will for interplay’ leaves residents feeling abandoned (Anderberg and Berglund, Reference Anderberg and Berglund2010). One resident talks of the pain of being rejected by carers: ‘They say to me “we cannot understand what you are saying” … and I can't understand what they have against me’ (Anderberg and Berglund, Reference Anderberg and Berglund2010: 66). Residents often attempt to connect with carers but must overcome many impediments to do so. In this instance, the carers do not accept this resident's invitation to engage and do not offer the resident the gift of their attention, because they refuse to bridge the gap of the communication barrier, causing this resident to feel rejected. This sort of exclusion from interpersonal connection fosters what Galvin and Todres (Reference Galvin and Todres2013: 105) term an ‘inhospitable lack of belonging’.
Our analysis showed that residents coped with the deficits of nursing home care by lowering their expectations of life and of care. On the one hand, this can be understood as a sign of defeat and resignation, which is problematic and detrimental to the possibility of producing well-being. If a person feels unable to affect their situation, and simultaneously feels demoted to an object, it causes a sense of ‘fragmented identity’ (Galvin and Todres, Reference Galvin and Todres2013) – the antithesis of well-being. Conversely, some authors argue that lowered expectations are a prerequisite to well-being (Anderberg and Berglund, Reference Anderberg and Berglund2010). This argument is premised on the notion that life in a nursing home (and perhaps indeed very old age itself) can never be like it was before. Therefore, in order to have a sense of well-being, one has to make peace with this reality. In dwelling-mobility we find the concept of making peace with what is given, what Heidegger termed Gelassenheit, a letting-be-ness of that which cannot be fought anyway. But there also must be a sense of possibility. The suffering person must feel that there is also something more. Care staff play a vital role in the provision of this sense of possibility. Residents seek what Mondaca et al. (Reference Mondaca, Josephsson, Katz and Rosenberg2018) call ‘a place for other lifeworlds’. This can be interpreted as the ‘mobility’ part of dwelling-mobility. While many residents largely accept their circumstances, they also seek the possibility for ‘something more’, exemplified by a resident who, during a trip to the dentist, asked her carer if they could stop at a café on the way home (Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018). The request was rejected, and the opportunity for creating a sense of (dwelling-)mobility was lost.
Being dependent complicates notions of agency, but it does not necessarily eliminate it. Instead, agency is enacted and negotiated in the intersubjective space, where it may be delegated (Pirhonen and Pietilä, Reference Pirhonen and Pietilä2018). From this perspective, the acceptance of help and care is transformed from receptive passivity into a form of agency. This is illustrated by residents striving to balance receiving care with managing as much as possible on their own (Anderberg and Berglund, Reference Anderberg and Berglund2010; Taylor et al., Reference Taylor, Sims and Haines2014). When delegated agency is not accepted, dependence and powerlessness is amplified (Mondaca et al., Reference Mondaca, Josephsson, Katz and Rosenberg2018). Carer responsiveness to residents' needs and requests for help goes a long way to producing a strong foundation from which well-being can be experienced. The meaning of freedom in very old age may also change from the freedom to do, to the freedom from obligations (Minney and Ranzijn, Reference Minney and Ranzijn2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). More broadly, this can be conceived as freedom to simply be. This is what Galvin and Todres term ‘I am’ in the identity dimension of dwelling-mobility.
Some of the studies propose that the residents' personal attitudes are a precursor to well-being (Bergland and Kirkevold, Reference Bergland and Kirkevold2006; Bollig et al., Reference Bollig, Gjengedal and Rosland2016; Minney and Ranzijn, Reference Minney and Ranzijn2016; Caspari et al., Reference Caspari, Råholm, Sæteren, Rehnsfeldt, Lillestø, Lohne, Slettebø, Heggestad, Høy, Lindwall and Nåden2018). A systematic review of quality of life in care homes (Bradshaw et al., Reference Bradshaw, Playford and Riazi2012) similarly concluded that a positive attitude enabled residents to adjust successfully to care homes. We would like to nuance this understanding of attitude; and suggest that attitude is not simply a matter of choice, but rather something that is produced situationally. In this understanding, attitude is not static but something more malleable, a complex interplay of agency, intersubjectivity and mood, or rather attunement, as well as spatial and temporal elements. Attunement, or Befindlichkeit as Heidegger termed it (Greaves, Reference Greaves2010), conditions our very possibility for experiencing (in) the world. Our moods attune us to the world and shape our experiences of the world. A phenomenological approach thus understands mood as something that is intricately bound up with our being-in-the-world. Greaves (Reference Greaves2010: 66) describes the reciprocity between mood and circumstance aptly: ‘Through my mood circumstances reveal themselves and as they reveal themselves, they affect my mood.’ Furthermore, phenomenology posits that places and situations can have moods, or ‘atmospheres’. Mood, then, is not only our projection on to the world, but also something that is already there. So, our attitudes are not simply choices we make about how to feel about the world. Rather, they emerge through our engagement with the world. Our moods which are bound up with our ‘thrownness’ make us disposed to experience our lifeworld in a particular way.
Attitude, as it is used in common parlance, insinuates an active choice, and while we can, according to Heidegger, have agentic influence on our moods, we cannot always control it. Heidegger argues that even when we master a mood, we do so only by employing a counter-mood (Greaves, Reference Greaves2010). Having the ‘right attitude’, therefore, may require persistent effort. A move into a nursing home is usually a big upheaval in a person's life. At this point, one's life can feel like it is out of one's control. In addition to the risk of simplifying the role of attitude as discussed above, the problem with focusing too intently on the attitude of the resident is that it can lead to ‘individual responsibilization’ (Hunt, Reference Hunt, Hunt, Doyle and Ericson2018), wherein the responsibility for the resident's well-being is placed back on the individual resident themself. A lack of well-being may thus, in this interpretation, be a failure of attitude. This approach not only neglects to consider the complexity of factors producing attitude(s), but also risks absolving care systems of the responsibility to create a caring, nurturing environment, in which dwelling-mobility can be established. While adaptability may be key to a good life in nursing homes, the transition to nursing home is an often-vulnerable time and many may lack the personal resources required to produce a ‘good’ attitude, or they may simply refuse to lower their expectations, and instead respond with anger (Paque et al., Reference Paque, Bastiaens, Van Bogaert and Dilles2018). Here, anger as resistance can be seen as an act of agency. We should also be mindful that what looks like adaptability may in reality feel like resignation.
Sometimes institutional structures hamper the possibilities for establishing a nurturing environment. In such situations, care as regimented routine precludes care as responsive intersubjectivity. Wiersma and Dupuis (Reference Wiersma and Dupuis2010) describe how scripted care routines in nursing homes produce institutional bodies. Care encounters are focused on the physical body – the body as an object – thus marginalising the body as an experiencing self (Wiersma and Dupuis, Reference Wiersma and Dupuis2010). Care relationships are shaped by the values of the organisation, which in turn mirrors the values of the broader society (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006). The failures of care systems then cannot be separated from culturally constructed ideas of ageing. Taylor et al. (Reference Taylor, Sims and Haines2014) suggest we move beyond the medicalised understanding of frailty, and approach it instead as an impetus to bond, engage and collaborate. Anderberg and Berglund (Reference Anderberg and Berglund2010) conclude that the aim in old age care should be a ‘neutral zone’, where neither resident nor staff exert control on the other. What the overall findings show, however, is not that neutrality is needed, but real engagement, a ‘being with’ as the gift of attention (Fredriksson, Reference Fredriksson1999) that allows for the possibility of dwelling-mobility.
Loe (Reference Loe, Lamb, Robbins-Ruszkowski and Corwin2017) suggests that instead of aiming for successful ageing for the oldest old, it would be more beneficial to strive for ‘comfortable ageing’, which means fostering an acceptance of care dependence, embracing vulnerability and accepting mortality. It means ‘learning to be in a culture of doing’ (Loe, 2017: 221). The results of this meta-ethnography point in a similar direction. Successful ageing in very old age is futile, but possibilities for well-being still exist.
Conclusion
In contrast to the dominant ideals of successful ageing, against which very old age in nursing homes can look like a failure, the results of this meta-ethnography show that by shifting the focus from the attainment of particular cultural values to an understanding of how the experience of well-being is structured, it is possible to gain new perspectives on well-being for the oldest old in institutional care. We suggest that instead of measuring success, what is needed is a better understanding of the existential experiences of well-being in very old age in order to foster nourishing care environments now and into the future.
Our recommendations here do not involve a systemic restructure – though this may certainly also be desirable. What we want to emphasise and encourage is more of an epistemological and ontological reflection. By rethinking very old age through the lens of dwelling-mobility, we can contest the mores of successful ageing and the decline and deficit narrative that it augurs in the transition from third to fourth age. Care practices are inextricably linked with cultural ideas around ageing and well-being. Through the dwelling-mobility lens we have offered a different perspective in which the fourth age is not the antithesis of well-being. Instead, well-being can be fostered alongside the inevitable vicissitudes of very old age.
Humanising care practices can counteract notions of unravelling personhood by opening up an existential space in which vulnerability and well-being can co-exist. Oldest old nursing home residents experience well-being when they feel seen and valued by staff, who set aside institutional routines in favour of the interpersonal encounter and who make space for intersubjective agency. Dwelling-mobility is created through little moments of connection, moments of seeing, of hearing and of being fully present to each other on a deeply human level. Institutional routines can turn persons into tasks. This is a problem of how care delivery is structured, but the formal structures of the system also become the mental structures of its workers. Fostering existential well-being cannot be done through a set of quantifiable tasks, it is accomplished through meaningful interaction. Thus, how staff attune to residents is key. But the onus is on care systems to reorient care delivery from the task management of ‘being there’ care to the real intersubjective engagement of ‘being with’ care (Fredriksson, Reference Fredriksson1999). We suggest that the lens of dwelling-mobility allows for a better understanding of the kinds of well-being experiences that are still possible in very old age.
Limitations
The reader will note that many of the studies included are from a Nordic background. This is not by design. However, we did deliberately select only studies from a Western context. This undoubtedly poses a limitation. However, to account for very varied cultural contexts in a meaningful way that avoids reductionistic stereotypes was beyond the scope of this article. Therefore, the results should be read with this in mind.
In the cultural contexts of the included studies, eldercare is largely positioned as a public responsibility. There are some exceptions, such as Spain, where care has traditionally been largely family-based, though it is increasingly moving into the public sphere. While it would be meaningful to look into the ways in which these national structures for care provision impact care delivery, it was not within the remit of this article to do so.
Only studies from 2005 onwards were included. This was a deliberate choice in order to reflect contemporary experiences. Much has changed in recent decades as new public management approaches have come to dominate care provision. Simultaneously, recent decades have seen a move to more person-centred care via the culture change movement. Including older studies could have provided historical interest but would not have reflected the constraints within which contemporary care systems operate.
Finally, this review only considered the lived experiences of nursing home residents. We are not suggesting that the problems are caused by ill intentions of care staff, but rather the pared back neoliberal systems within which care is delivered. Further research is needed to explore how care systems can be restructured to better foster dwelling-mobility for its residents.
Author contributions
MGK and MG conceived of the idea for the article and the concept was then developed by EJB. EJB conducted the search, with the help of a research librarian, and EJB and MGK jointly assessed the suitability for inclusion of studies by using CASP and discussing the merits of each study. The final list of studies was then agreed between EJB, MGK and MG. The analysis was performed by EJB and then discussed between all authors. All authors contributed substantial input to the structure and content of the article.
Financial support
This work was supported by the European Union's Horizon 2020 Research and Innovation Programme (MSCA-ITN-2018 under grant agreement number 813928). The financial sponsor played no role in the design, execution or analysis of data, nor in the writing of this article.
Conflict of interest
The authors declare no conflicts of interest.
Ethical standards
No ethical approval was required for this study.
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