Introduction
As in many other countries, it is a political goal in Norway to enable older people to continue to live in their own homes as long as possible, to ‘age in place’, with a high quality of life (Ministry of Health and Care Services, 2017; Martens, Reference Martens2018). Nevertheless, older people who live alone may experience loneliness, frailty (Kojima et al., Reference Kojima, Taniguchi, Kitamura and Fujiwara2020) and lack of support (World Health Organization, 2015: 12). Frailty, often described in the clinical literature as a state of vulnerability with increased risk of adverse outcomes (Clegg et al., Reference Clegg, Young, Iliffe, Rikkert and Rockwood2013; Fillit et al., Reference Fillit, Rockwood, Young, Fillit, Rockwood and Young2017), is associated with, for example, ageing, insufficient social support, reduced physical activity, multi-morbidity and chronic disease (Sezgin et al., Reference Sezgin, O'Donovan, Cornally, Liew and O'Caoimh2019). Research has also described an association between frailty and living alone, possibly related to reduced social networks and loneliness (Kojima et al., Reference Kojima, Taniguchi, Kitamura and Fujiwara2020). As populations age, more people will live alone with frailty. It is therefore important to understand how older people living alone, and who are perceived by their helpers as being frail, experience and manage their everyday lives.
Older people have highlighted the importance of independence and resilience to maintain quality of life (Pan, Reference Pan, Bloomfield and Boyd2019). The concept of resilience has been used as an entrance into inquiries about wellbeing in older age. Resilience is variously and simultaneously considered as a process, as a static personal quality and as related to the outcome of a challenging situation (Wild et al., Reference Wild, Wiles and Allen2013; Angevaare et al., Reference Angevaare, Roberts, van Hout, Joling, Smalbrugge, Schoonmade, Windle and Hertogh2020). The literature on older people and resilience generally agrees that resilience occurs in the context of adversity, involves the use of assets or resources to buffer the experience of adversity, and is a good or positive response (Wild et al., Reference Wild, Wiles and Allen2013; Angevaare et al., Reference Angevaare, Roberts, van Hout, Joling, Smalbrugge, Schoonmade, Windle and Hertogh2020). Resilience is thus a multi-dimensional, contextual and ongoing process (Wiles et al., Reference Wiles, Wild, Kerse and Allen2012: 423) which may enable older people who live alone with frailty and health challenges to manage everyday life and continue to live at home.
Research has identified how older people use personal, social and contextual resources to mediate adversity (Janssen et al., Reference Janssen, Regenmortel and Abma2011), highlighting the importance of support from friends and family and access to community resources (Janssen et al., Reference Janssen, Regenmortel and Abma2011; Wiles et al., Reference Wiles, Wild, Kerse and Allen2012). For some older people who live alone and need support, home-based health and care services constitute an important resource. Home care professionals who aim to take a person-centred approach to care should thus consider the strategies that older people living alone use to manage their everyday lives, deal with their vulnerabilities and enhance their self-perceived strengths (Nicholson et al., Reference Nicholson, Gordon and Tinker2017; Wiles et al., Reference Wiles, Miskelly, Stewart, Kerse, Rolleston and Gott2019). Researchers have, however, noted that services for older people tend to engage with the ‘physical frail body’ (Nicholson et al., Reference Nicholson, Meyer, Flatley, Holman and Lowton2012: 1431) and that home care professionals find it challenging to consider older people's resources (Turjamaa et al., Reference Turjamaa, Hartikainen, Kangasniemi and Pietilä2014: 3207).
The overarching aim of this study is to gain insight into how older people who live alone and receive home care, and who may experience frailty, manage their everyday lives.
Stories and storytelling, agency and frailty in old age
Several studies have indicated that storytelling and narratives play an important role in relation to older people and resilience (Aléx, Reference Aléx2010; Browne-Yung et al., Reference Browne-Yung, Walker, Luszcz and Bowers2017; Lloyd et al., Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020). Storytelling can be a way to make sense of the tension between resistance and acceptance (Nakashima and Canda, Reference Nakashima and Canda2005) and re-telling of memories of loss and coping in the past may be a source of strength in the present (Nakashima and Canda, Reference Nakashima and Canda2005; Browne-Yung et al., Reference Browne-Yung, Walker, Luszcz and Bowers2017). A personal story often contains references to ‘a world of actors, places, and events’, and is typically told for a purpose in an interactive setting (Bamberg, Reference Bamberg, Holstein and Gubrium2012: 103). Storytellers engage in how they would like to be seen by others and simultaneously construct ‘a sense of self’ (Bamberg, Reference Bamberg, Holstein and Gubrium2012). In this process, storytellers face three dilemmas: (a) navigating between remaining the same person yet changing across time (‘constancy and change’); (b) being a unique person or the same as everyone else (‘sameness versus difference’); and (c) ‘the agency dilemma’, positioning oneself on a continuum between being less powerful and an ‘agentive self-constructor’ who is strong and in control (Bamberg, Reference Bamberg2011, Reference Bamberg, Holstein and Gubrium2012). Navigating these dilemmas might be especially complex with advancing age and the concomitant experiences of age-related changes and diseases (Angevaare et al., Reference Angevaare, Roberts, van Hout, Joling, Smalbrugge, Schoonmade, Windle and Hertogh2020).
How older people navigate ‘the agency dilemma’ relates to their positioning vis-à-vis pre-existing normative discourses, that is, master narratives. Positioning themselves vis-à-vis master narratives, storytellers negotiate, resist or accept the master narratives that seem to define them (Bamberg, Reference Bamberg2004). For example, in Western societies, one dominant master narrative portrays ageing as the process of progressive decline in physical and mental capacity (Kesby, Reference Kesby2017). Another dominant master narrative, produced and reproduced in Norwegian policy documents (Blix and Ågotnes, Reference Blix and Ågotnes2023), concerns ‘successful’ or ‘active’ ageing (Kesby, Reference Kesby2017). Scholars have described how ‘young old age’ (‘the third age’) is associated with opportunity, engagement and agency, whereas ‘late old age’ (‘the fourth age’) is associated with dependency, passivity and frailty (Gilleard and Higgs, Reference Gilleard and Higgs2011; Kesby, Reference Kesby2017). Moreover, social scientists have argued that from being considered a stable social position, frailty has now become a journey towards undefined adverse outcomes, associated with a lack of agency and few available self-empowering narratives (Gilleard and Higgs, Reference Gilleard and Higgs2011: 475). Studies involving older people themselves challenge the assumption that being in ‘late old age’ is related to a lack of agency (Lloyd et al., Reference Lloyd, Calnan, Cameron, Seymour and Smith2014; Skilbeck et al., Reference Skilbeck, Arthur and Seymour2018). Older people's stories might thus function as ‘narratives of resistance’ (Mishler, Reference Mishler2005: 432).
Further research about how older people enact and practise resilience has been requested (Pan, 2019; Manning and Bouchard, Reference Manning and Bouchard2020). In the present study, we consider frailty to be an embodied, emotional and relational experience (Grenier, Reference Grenier2020), and we inquire into how older people who live alone and receive home care, and who may experience frailty, manage their everyday lives. Our research questions are focused on older people who live alone, receive home care and are identified by their home care professionals as frail, and we seek to understand how they:
(1) Experience frailty and balance their vulnerabilities and strengths within their stories.
(2) Express and negotiate resilience in their narrations.
Methods
Study design and setting
To inquire into how older people who live alone, receive home care and may experience frailty manage their everyday lives, we chose a longitudinal qualitative design with serial interviews. Serial interviews can promote familiarity and trust between the researcher and the participants (Cameron et al., Reference Cameron, Johnson, Lloyd, Evans, Smith, Porteus, Darton and Atkinson2019) and enable the co-creation of detailed and contextualised accounts (Murray and Sheikh, Reference Murray and Sheikh2006). Serial interviews also allow the researcher to follow up on topics that would benefit from further elaboration and enable inquiries into experiences of change and continuity over time (Cameron et al., Reference Cameron, Johnson, Lloyd, Evans, Smith, Porteus, Darton and Atkinson2019). Based on our available resources, and previous research suggesting that 4–11 months could be sufficient time to explore change and continuity in older people's everyday lives (Skilbeck et al., Reference Skilbeck, Arthur and Seymour2018), we chose a time-frame of eight months for the series of interviews (three interviews with each participant at four-month intervals). This study is part of a larger study that also included a sub-study exploring home care professionals' perspectives of frailty (Voie et al., Reference Voie, Blix, Helgesen, Larsen and Mæhre2023).
The study was conducted in northern Norway, in a municipality considered large on a Norwegian scale, i.e. with more than 50,000 residents (Haugstveit and Otnes, Reference Haugstveit and Otnes2017). The municipality consists of urban and more rural parts, and has a climate characterised by long snowy winters and short summers. In Norway, local authorities are responsible for providing necessary primary care services, including home care services such as health care, personal assistance, domestic care and support contact (Health and Care Services Act, 2011). The local authorities assess the individual applicant's care needs, and the applicant receives a decision on whether care services have been approved. While home nursing care is free of charge, service users pay a fee to cover part of the expenses for other home care services such as personal assistance and cleaning (Holm et al., Reference Holm, Mathisen, Sæterstrand and Brinchmann2017). Almost 30 per cent of all Norwegians aged 80 years or older receive some kind of home care (Statistics Norway, 2022).
Recruitment and participants
We used a purposeful sampling strategy (Braun and Clarke, Reference Braun and Clarke2013: 56), where managers of home care services and adult day care centres assisted in the recruitment of participants. Care professionals distributed invitations to service users who met the following inclusion criteria: aged 80 years or older, considered to be ‘frail’ by home care professionals, living alone (own house or flat, not an assisted living facility), and able to give informed consent. In this study, we conceptualise frailty as a subjective, relational and dynamic experience. Consequently, we did not use a frailty assessment tool. The inclusion of participants was solely based on the home care professionals' clinical judgements. The home care professionals who assisted with the recruitment worked with the participants on a daily basis and knew them well. Thus, in the context of home care, the participants were living with frailty.
The invitation letters to the participants contained information about the project's overall purpose, interview topics, and inclusion criteria related to age, living alone and receiving home care services. The invitation letters also suggested that the potential participant could be living with ‘frailty’, e.g. due to having a slow walking speed or a chronic disease. These aspects of frailty have previously been mentioned by older people describing their associations with frailty (Puts et al., Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Warmoth et al., Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016). We assumed that 24–30 interviews would provide sufficiently rich data to answer our research questions (Braun and Clarke, Reference Braun and Clarke2013: 55), and thus aimed to recruit eight to ten participants. Because we wanted to interview everyone who agreed to participate in the study, we distributed the invitation letters in small batches (approximately 20 letters altogether) until we had decided about the final sample size, in parallel with data generation. People who met the inclusion criteria and agreed to participate in the study posted a signed consent form in a prepaid envelope to the first author. The first author phoned each participant to discuss the study and make interview appointments. After the first series of interviews, we were confident that the interviews would provide sufficiently rich and complex data for this study.
Nine people, three men and six women, gave their consent to participate in the study. The age span between the youngest and the oldest participant was 17 years; the median age was 90 years. All participants were widowed with children. Some of them had lived alone for more than 20 years, whereas others had lived alone for less than 5 years. Some of the participants lived close to their children and family members, whereas others lived further away. At the time of the interviews, the participants received between one and four daily visits from home care services. The services they received included the administration of medication, meals on wheels, security alarm, domestic care, personal care and meal preparation. Some participants visited an adult day care centre regularly.
Data generation
The first author, a woman in her mid-forties who is a geriatric nurse, conducted three interviews with each participant at four-month intervals between May 2019 and June 2020. All participants were interviewed three times, and all interviews were conducted in the participants' homes, except for four interviews in the final series that were conducted via telephone due to COVID-19 restrictions.
We used a semi-structured interview guide which was responsive to the participants' developing narratives, and thus did not require questions to be asked in a specific way or in a specific order (Braun and Clarke, Reference Braun and Clarke2013: 78). The first interview, which was the most comprehensive, included questions about everyday life, health and ageing. The interview started with an open invitation to the participants to talk about themselves and their lives (‘Could you please tell me a little about yourself?’) and continued with open-ended questions such as: ‘Could you tell me about an ordinary day in your life? and ‘Could you tell me what good old age means to you?’ We also asked about the participants’ thoughts on the concept of frailty.
Interviews in the second and third series included topics regarding participants' experiences of their everyday life, experiences of change and expectations for the future. Towards the end of each interview, the interviewer summarised parts of the interview to allow the participants to make additional comments. All interviews were digitally recorded, and the recordings lasted between 30 and 80 minutes. The form of the interviews varied. While interviews with some participants contained many questions and responses, those with other participants involved mainly storytelling and listening.
Ethical considerations and data management
The Norwegian Centre for Research Data approved the study, which also adhered to the ethical guidelines of The National Committee for Research Ethics in the Social Sciences and the Humanities (2022). Because home care professionals assisted with the recruitment, potential participants might have felt obliged to participate in the study. We therefore asked the home care professionals to assure potential participants that it would not affect their care in any way if they declined to participate. This was repeated in the written information provided to the participants, as well as before all interviews. The first author emphasised that participation was voluntary, and that participants could withdraw without consequences. After the interviews, the first author reminded the participants about the longitudinal design of the study, and that the third interview would be the last. Before the second and third interviews the participants gave a new consent (written or oral). All interviews were recorded with participants' consent, and we stored the audio recordings digitally at Services for Sensitive Data, which is owned by the University of Oslo. Only the first author had access to the recordings and the consent letters, which were stored in a locked cabinet.
Analysis
After conducting the interviews, the first author transcribed and de-identified all interviews and gave the participants pseudonyms. In the early analysis of the interviews, we became aware that many narratives revealed courage, strength and resourcefulness, and we chose resilience as the conceptual framework for our analysis. Our focus on resilience was thus anchored in the data.
In our further analysis, we drew on positioning theory (see Bamberg, Reference Bamberg2004) and used a combination of reflexive thematic analysis (Braun and Clarke, Reference Braun and Clarke2021) and narrative positioning analysis (Bamberg, Reference Bamberg2004). A combination of thematic and narrative analysis has been suggested as well suited for studies involving older people (Wiles et al., Reference Wiles, Miskelly, Stewart, Kerse, Rolleston and Gott2019). Thematic analysis includes a search for patterns across interviews (Braun and Clarke, Reference Braun and Clarke2013: 180), and narrative analysis is suited to inquiring into diversity between and within older people's narratives (Janssen et al., Reference Janssen, Regenmortel and Abma2011).
The thematic analysis included reading and re-reading the transcripts and two rounds of coding using QSR NVivo software for support. To enhance rigour and trustworthiness, we followed Braun and Clarke's (Reference Braun and Clarke2013: 287) checklist for thematic analysis. After we had become familiar with the data, and sharpened our research questions towards resilience, we used previous literature on resilience as a lens through which the data were read (Braun and Clarke, Reference Braun and Clarke2021). In regular discussion with the research team, the first author coded text passages that were meaningful in relation to resilience with close-to-text codes, such as ‘Life needs to go on’ and ‘I can't do that, but I can do this’. The codes were developed across the whole dataset in a back-and-forth process with the entire team. After the first author had grouped the codes together, we re-examined these potential themes by drawing on concepts from the literature about resilience such as ‘acceptance’ (Nakashima and Canda, Reference Nakashima and Canda2005) and ‘adaptation’ (Aléx, Reference Aléx2010). The thematic analysis was thus both inductive and deductive. During the writing of the article, the authors revised the preliminary themes in several rounds. We ended up with three thematic threads, ‘continuity in change’, ‘adapting to change’ and ‘resisting negative narratives of old age’, which we considered to relate to resilience as continuity, adaptation and resistance.
In the second step of the analysis, the first author searched the data thoroughly to identify individual stories that included an obstacle or challenge and some level of ambiguity. For further presentation and narrative positioning analysis, we chose three stories about living alone and receiving home care in which we recognised the three thematic threads that we had identified in the thematic analysis (see Table 1). We did not choose these three stories because they were representative of the dataset, but because continuity, adaptation or resistance were made relevant in different ways in these stories. To analyse these stories, we used a three-level narrative positioning analysis (Bamberg, Reference Bamberg2004). The first level deals with how characters in the story are positioned in relation to each other. The second level focuses on positioning within the interview setting, while the third level concentrates on how storytellers position themselves in relation to social and cultural master narratives.
Examples of how we initially identified continuity, adaptation or resistance in each story
We discussed quotations and preliminary results with an expert team recruited from the senior council of the county and from the home care services. The expert team consisted of three retirees including one person with experience as a family carer, and a registered nurse working in home care. The team contributed to the analysis by supporting and sometimes challenging our interpretations. For example, one quote that the first author had interpreted as being about courage and resistance was perceived by a member of the expert team as being about stubbornness and taking too much risk. The first author translated the quotations included in the article from Norwegian to English. The translations were discussed and revised in the author group, and the authors take the full responsibility for the translation of the quotations.
Results of the thematic analysis
Continuity in change
All participants spoke about experiences of change, such as the loss of loved ones, changing social networks and changing health. Changes in health could be problems with mobility or experiences of illness and pain. The participants also described changes in their life situation that had occurred in the intervals between the interviews, e.g. increased or reduced support from the home care services, or increased feelings of frailty. Nevertheless, the participants also described continuity in change, such as connectedness to people and places, and a sense of continuity in self across time:
I don't think it's noticeable that I've grown old (laughs). It's just a little sad that you become so reduced. But it comes with age, I realise that. (Lars)
The participants' sense of continuity of self across time buffered experiences of change, even adverse change such as reduced health, and we identified ‘continuity in change’ as a way of doing resilience.
The participants' descriptions of living at home and engaging in everyday life were also related to continuity. Several participants stated that as long as they could manage, they would like to continue to live at home and do everyday things themselves. Many used phrases such as ‘as long as I can’ or ‘while I still manage’, indicating an acceptance that their situation might change (see also Lloyd et al., Reference Lloyd, Calnan, Cameron, Seymour and Smith2014). At the same time, the participants were grateful for the support they received from their families and from home care. Some stated that this enabled them to continue living at home and do things themselves. ‘Continuity in change’ thus involved finding the right balance between doing things oneself and receiving support.
Adapting to change
All participants presented examples of ways in which they were adapting to changes, often in response to an invitation to talk about their daily routine. Examples included strategies developed to manage illness and everyday activities, and to maintain health. Adapting to change often included the use of aids and other adjustments to avoid falls:
‘I've fallen over … But now I'm more careful. I stand for a while before I start to walk’ (Dora).
Adapting also included accepting that they could no longer do particular activities:
‘I used to knit, but then I got tendonitis. So I had to leave off knitting’ (Jane).
Other examples of adjustments included listening to audiobooks instead of reading books and preparing ready-made food rather than cooking.
Participants often presented health challenges as something to be expected in old age, suggesting that part of their adaptation was reframing their own expectations and perceptions of wellbeing:
‘You know, when we get old, we accumulate a lot of health problems’ (Dora).
Some participants positioned themselves as privileged compared to other older people:
‘I have people around me … Many people are not that lucky’ (Lars).
The position as privileged was associated with having a social network and the ability to adapt to change.
The participants talked about how being with other people and being active helped to prevent and manage illness problems and declining health:
When you have something to do, it's much better. Not only do you forget about the illness, but you can also feel the difference in your body. (Jonas)
They described their efforts to continue their life-long habits of being physically, socially and cognitively active, and the adaptations they made to keep doing these things, such as physical exercises and being ‘health conscious’:
I pay attention to everything, TV, news. They said on TV once that people who read a lot keep their mind clear. (Jill)
Adaptation was an integral part of the participants' everyday lives.
Resisting negative narratives of old age
The participants often positioned themselves as having a clear mind and being independent, in contrast to negative representations of ageing that include dependence and lack of agency. Several participants emphasised the freedom they had in their own homes:
‘I can do precisely what I like, and what I can manage’ (Laila).
Another participant said:
I don't define myself as frail, the way I am now. If I feel like it, I can have a glass of brandy, or a glass of wine. I have no limitations in that way. (Lars)
As these quotes show, some participants associated frailty with dependence and a lack of freedom. There were also participants who explicitly resisted being positioned as frail:
‘“Aah, I'm so frail, I cannot manage, I don't manage”. That's not for me’ (Ella).
In contrast, when participants did state that they felt frail, or were frail, they often explained their statements by referring to illness and pain.
A few participants challenged the narrative of inevitable decline associated with ageing. They argued that some of their conditions were ‘with’ rather than ‘because of’ old age, that the conditions would pass or that they could recover with support. One participant stated:
I don't think I'll have to move [away from home], or that I'll live in misery as an older person … There's a lot to look forward to. (Jane)
Other participants talked about situations in which they had resisted suggestions about change from family members or care professionals, such as moving to a nursing home:
‘“I'm old enough to know what I want”. Then I was determined. Because I'm quite determined’ (Laila).
The participants described engaging in acts of resistance, and as this statement shows, some used their advanced age and determination as a resource for this. Resilience was not only a process of adaptation and acceptance of change, but also about resisting change and negative narratives of ageing.
Results of the narrative positioning analysis
In the following, we present and analyse three stories narrated by the three participants Ella, Laila and John.
Ella: ‘Only once have I told someone off’
Ella was in her nineties, had worked hard all her life and preferred to do everyday things herself. When Ella described her everyday life, she emphasised her autonomy: ‘I go to bed when I want, I get up when I want, and I decide for myself and for my life.’ Ella talked about how she had always taken care of her health, and about the support she received from her family and home care. At the time of the first interview, she received one regular daily home care visit. Throughout this interview, Ella emphasised that collaboration and joint responsibility between herself and the care providers made these visits work well. Ella talked about receiving the help that she needed, and added:
…and the home care nurses, there I have nothing to complain about. Only once have I told someone off … It was snowy, and she [the home care provider] did not use plastic over her shoes. She came in with her winter shoes on. I said: ‘You don't have anything on your shoes?’ It is … so hard for me to clean and … hang out mats and so on. ‘Yes, [she said] the shoes are clean.’ I didn't have to worry about that. However, it turned out that her shoes had not been so clean … She was here a couple of times later, and she was really nice.
Ella continued by stating that all the home care staff who visited her were friendly.
Laila: ‘You cannot give up, you have to think you'll manage’
Laila was born in the 1920s and grew up at a time when there was a shortage of food and few material resources. In the first interview, she spoke about her life, about opportunities and missed opportunities, and said that she often thanked God for the good lives people have today. Laila talked about health challenges and about missing someone her own age to talk to, but she also emphasised that she did not believe her everyday life could be any better. At the time of the third interview, Laila received fewer visits from home care services due to COVID-19 restrictions. In this phone interview, Laila spoke about her daily routines, such as cooking dinner, eating breakfast, having supper and taking her medications. When asked if she received the help she needed, Laila said: ‘Well. I'm not quite sure. Actually, I don't need much help now. I need…’ Then she continued:
Laila: One day, I was going to clean my kitchen worktop, under it, the place where we keep the rubbish bin … They don't see the dirt, these youths [in home care services]. I took one of those short benches and sat on it. I finished the cleaning, it went really well, very easy and – But when I was going to get up from that little chair, I couldn't get up. I couldn't get up. It was impossible. Do you know what I did? I slid on my bottom. I got into the living room, next to the sofa. I grabbed the sofa, and I got up. But then I was tired. I was tired then. Of course, I could've called them [home care]. I didn't, because I'll manage. I'll manage because I know I'll get up.
Interviewer: And you managed to do it?
Laila: Yes, I did it, but I was tired afterwards. I was really tired, and I lay down on the sofa. Later, they [home care] said: ‘You could have called us.’ Well, at the time I didn't think of that…
Interviewer: You've been used to managing on your own, I think?
Laila: Yes. You cannot give up. You have to think, I'll manage. Find a solution. Many people don't do that, people who are not that strong [mentally]. I'm not strong in my arms, but I was strong enough to get up. Because when I came next to the sofa, I said, ‘You're going up there!’ (laughs). And I got up. But now I make sure that I don't fall on the floor. That's when it gets dangerous, if you fall and hurt yourself. I'm careful about that. I have my walker; the walker is good.
Laila also stated that since she did not completely trust her walking ability, the walker gave her a feeling of safety in her daily life.
John: ‘I don't have anything to complain about’
John was a man in his nineties. He often had visits from his family, and he had daily regular home care visits. In the first interview, which took place in spring, John said that he had not been able to walk outdoors during the winter and that his health had thus been reduced. He found that his wellbeing varied throughout the course of a day and said that he ‘at least up until now’ had managed his morning routines. John spoke about having had a good life, and a fairly good everyday life at present, and said:
Compared to … I think about my ancestors. I remember my grandparents, and parents and … Back then there wasn't much help to be had…
John demonstrated this point by telling the following story from his childhood:
An old woman was lying in a small room at home. I was just a child then, and my Dad, he had installed a little stove for her … And … in the winter … We didn't have an indoor toilet. We had an outdoor toilet. In the winter, she was going to the toilet. One winter, I was just a child; she fell in a snowdrift … My Mum couldn't manage to help her up. Luckily, a helpful man came by, so we got her up … and back in. My father, he … it was winter, and my father was away in the fishing boat. It was like that then. In the winter, they [the women] were alone. They had the house, the barn and the children. The men, they were at sea for months. So, I don't have anything to complain about. I've had a good life.
John then reflected on living at home and whether he would receive sufficient help in the future. He expressed concerns regarding cutbacks to services and the lack of places in the local nursing homes.
A three-level positioning analysis
Story characters and how they are positioned in the stories
In the context of a discussion about the support she receives, Ella talks about the home care provider who came into her home without wearing plastic covers over her shoes, and how she questioned the person's decision. In her meeting with the home care professional, Ella is taking a stand in the interaction (Riessman, Reference Riessman2000) to resist having her standards compromised. With her question to the home care provider, Ella positions herself as a service user, but also as the owner of her home. Being a house owner includes having the right to question a guest's decisions about not wearing shoe covers, and Ella thus shows that she is being reasonable by telling the person off. She positions herself as resistant not so much to dirt as to extra unnecessary work, and further positions herself as someone for whom that work would be extra hard. Ella uses this justification to defend her assertion, and she frames her comment to the home care professional as a way of adapting and conserving her energy. While Ella reports accepting that certain tasks have become challenging for her, she also challenges the idea that physical frailty should stop her from taking action to keep her home clean. In her story, Ella resists frailty, but she also uses frailty to resist having her standards for a clean home compromised (see Grenier and Hanley, Reference Grenier and Hanley2007). As Ella asserts her established standards for having a clean home, she insists on some form of continuity. Although she lives alone and cannot manage continuity in these standards herself, she takes charge and finds solutions. The home care professional who walked into Ella's home with dirty shoes comes across as inconsiderate, a threat to Ella's desire to keep her home clean. Nonetheless, Ella eventually repositions the home care provider from an inconsiderate to a ‘really nice’ person. By doing so, she actively positions herself as an agreeable and reasonable person. Ella's story about being a home care service user thus demonstrates her agency, resourcefulness and carefulness.
In Laila's story, the home care staff are introduced as ‘these youths’ who do not see the dirt. Laila draws on the young–old dichotomy and establishes a generational difference in standards for having a clean home. By referring to the home care staff as ‘these youths’, ‘they’ and ‘them’, Laila keeps the staff ‘unnamed and faceless’ (Bamberg, Reference Bamberg2004: 340). She leaves them in the background as a resource that she does not depend on, but might choose to use. Similarly to Ella, Laila resists changing her standards and insists on continuity in keeping her home clean. In her story about cleaning the worktop, Laila positions herself as a creative agent who lives alone and acts on the challenges she faces. She also positions herself as mentally strong, unlike other older people who ‘are not that strong’. However, Laila acknowledges that she is physically vulnerable, so a fall could be dangerous. In the closing of her narrative, she says ‘I am careful about that’, and positions herself as adapting to the challenges she experiences. Laila takes precautions to avoid falls, and when needed she rests on the sofa. She positions herself as a careful, cautious, and yet also a creative and courageous agent.
In John's story, the old woman is positioned as a person who was dependent on help from his family. However, when John was a child, his father was absent, and his mother was unable to help the old woman up from the snow drift. The ‘hero’, the man who came by and helped the old woman up from the heap of snow, has a small but important role in the story. John's story demonstrates that older people have always needed help. Furthermore, the story communicates that receiving help and support should not be taken for granted, as older people in the past had to rely on luck to receive the help that they needed. John positions himself as grateful for the safety that health-care services represent in his everyday life and accepts that he needs home care to manage his everyday life living alone. By telling a story that does not include any home care staff, John highlights the importance of home care in the present.
The storytellers' positionings vis-à-vis the interviewer
All the stories were told in the context of an interview about being old, living alone and receiving home care. The written information about the study suggested to the participants that they might experience frailty, but we had not required that they positioned themselves as frail. Before Ella mentioned the home care professional who did not wear shoe covers, she was asked about the home care services she received. With her statement about how she ‘only once’ had told someone off, Ella suggests she is a person who does not complain. That particular story is the exception. Ella reminds the interviewer that she is not ‘only’ a home care service user, she is also a house owner and a woman with certain standards regarding her home.
With her statement about how she does not need ‘much help now’, Laila indicates that she does not readily accept the interviewer's implicit positioning of her as dependent on help. She does not contradict the suggestion, but she signifies that there has been a change in her situation: her situation has improved. Then she exemplifies how she managed a challenging everyday task without help from the home care services. In the interactive setting, Laila positions herself as an older person who manages difficult situations on her own, while downplaying the positioning of herself as a home care service user. Laila indicates that she had several options in the situation (‘Do you know what I did?’), a claim she underpins with the statement about how she could have chosen to call the home care services, and how they stated that she ‘could have called’. Laila's positioning as an ‘unusual’ older person when it comes to mental strength is supported by the interviewer's suggestion that she might be used to managing by herself. Laila does, however, balance her claim of being independent with her acceptance of physical vulnerability and risk of falls. Although her positioning as an ‘unusual’ person suggests that she is resisting a positioning as ‘being frail’, Laila describes her lack of physical strength and fear of falls, suggesting that she experiences physical frailty. She also points out how she takes care not to fall, which includes using a walker.
By stating that he ‘at least up until now’ has managed his morning routines, John positions himself as a realist, accepting that his situation might change. In contrast to Ella's and Laila's stories, we do not identify resistance in John's story. John does not challenge the positioning of himself as a user of the home care services. However, he positions himself as having knowledge about the past that the middle-aged interviewer does not have and thus as having additional resources.
The third level, positionings vis-à-vis cultural master narratives
Cultural representations of age hold representations of age-appropriate agency, which might become internalised as part of self-identity (Jolanki, Reference Jolanki2009: 225). Ella's statement about having ‘nothing to complain about’ is in accordance with a narrative about complaining as wrong, and a narrative that emphasises pragmatism, robustness and independence. Laila's choice to not call the home care services also suggests a positioning in line with these narratives.
All three stories need to be considered in light of the time and place where the participants grew up. Between 1930 and 1960, the notion of a ‘housewife contract’ stressed that a family should be able to live on one income (Aléx, Reference Aléx2010), and many women were working at home. John's story underscores the importance of the fisheries for people along the Norwegian coast. Between January and April, many men participated in ‘the Lofoten fishery’ while the women took care of the homes, farms, children and animals. The importance of home, and continuity in the context of home, is evident in all three stories. The women position themselves in accordance with the home as a place that should be clean and presentable. To have a presentable home seems linked to their sense of self, as they both take action to keep their homes presentable. Ella's positioning of herself as both a home care service user and the owner of her home links her expression of agency to her position in the home. Similarly, Laila downplays her positioning as a home care service user and positions herself as independent and creative, taking action to keep her home clean. In describing their independence, adaptation to changing circumstances and co-operation with the home care staff, Ella and Laila position themselves in accordance with the master narrative about ‘successful’, or ‘active’, ageing.
In John's story, the home is a natural place for care and interdependence. When John repeats that he was just a child at the time of his story, he underscores that he was not in a position to help the old woman. He draws on the narrative about men as responsible for the family, indicating that if he could, he would have helped. While John expresses a positive attitude towards help from care services, which is ‘positive adaptation’ (Hammarström and Torres, Reference Hammarström and Torres2010: 77), his uncertainty about the future and the way his story echoes the master narrative about old age and dependency seems to hold an underlying fear of becoming a burden. We also identify this undertone of vulnerability and fear of dependence in Laila's talk about falls as potentially dangerous. Laila acknowledges the master narrative about ageing as decline and positions herself in accordance with ageing as physical decline. However, by comparing herself to other older people who are ‘not that [mentally] strong’, Laila resists positioning herself in accordance with ageing as mental decline. Moreover, by constructing a duality between her ‘self’ and her body (see Cluley et al., Reference Cluley, Martin, Radnor and Banerjee2021), Laila positions herself as ageing in accordance with the narrative of ‘successful’ ageing, although with a physically frail body.
Discussion
In this article, we considered resilience as a multi-dimensional, contextual and ongoing process, rather than a quality that individuals ‘may or may not possess’ (Shaw et al., Reference Shaw, McLean, Taylor, Swartout and Querna2016: 36). The participants in this study were people of advanced age who lived alone and received home care. They had managed their everyday lives for many years. The older people in this study told of diverse experiences of change, adverse change and the potential for further change, and they described how they continued to manage their everyday lives. We consider the participants' narrations as ways of enacting resilience, and by inquiring into their narratives, we learned about the strategies they used to cope with change and to manage their everyday lives. The concept of resilience sensitised us to the strength and courage involved in the participants' negotiations of personal and contextual vulnerabilities (Wiles et al., Reference Wiles, Wild, Kerse and Allen2012: 423).
We identified three thematic threads in the participants' narrations about living alone and receiving home care, which we related to resilience as continuity, adaptation and resistance. The participants' descriptions of a sense of continuity and their strategies to adapt to changes in their everyday lives concur with results in previous studies (Browne-Yung et al., Reference Browne-Yung, Walker, Luszcz and Bowers2017; Wiles et al., Reference Wiles, Miskelly, Stewart, Kerse, Rolleston and Gott2019). Previous studies involving older people have also described links between resilience and resistance. Nakashima and Canda (Reference Nakashima and Canda2005) described resisting and surrendering as dynamic and creative processes that supported older people's wellbeing towards the end of their lives. Moreover, Grenier and Hanley (Reference Grenier and Hanley2007: 217) reported that older women's stories revealed resilience to ‘coercive acts of power’, linked to the concept of frailty. In the present study, we considered resistance towards negative narratives of old age as a process of resilience (see also Ungar (Reference Ungar2018) who identified resistance as one of five processes of resilience). However, in line with Riessman (Reference Riessman2000: 131), we believe that further conceptual unpacking of the relationship between resilience and resistance would benefit theory.
By closely examining three individual stories, this study extended previous research by showing how older persons narrated continuity, adaptation and resistance, and used these processes interchangeably and strategically in their stories. As exemplified by Ella's story, older people can adapt to change (less physical strength) and use this adaptation to resist having their lifelong values and standards (a clean home) compromised by others. Thus, our results demonstrate that the processes of adaptation and resistance can work in parallel. Our results also show that the participants positioned themselves as moving along the continuum of being strong and in control (not needing much help now, being resourceful) and less powerful (fear of becoming a burden, fear of falls). Laila's description of how she subsequently acted to avoid falls also shows that positioning is a dynamic process, ‘situated and continuously in flux’ (Bamberg, Reference Bamberg2011: 9). The participants in this study were navigating ‘the agency dilemma’ (Bamberg, Reference Bamberg2011) by drawing on, accepting or resisting master narratives about ageing. Their positioning vis-à-vis master narratives varied both across and within the individual participants' stories. While previous research reported that older people who lived with frailty of various degrees managed to adapt to changes and reintegrate a sense of self into a consistent narrative (Lloyd et al., Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020), the present study shows how older people balance their vulnerabilities and strengths within their individual stories. Hence, storytelling not only provided an opportunity for constructing and maintaining a consistent and meaningful identity, it also involved the management of contrasting and conflicting identities.
In this study, the older people's narrations demonstrated the process of managing contrasting and conflicting identities, and the storytellers' navigation of the ‘sameness versus difference’ dilemma and the dilemma between ‘constancy and change’ (Bamberg, Reference Bamberg2011). Positioning oneself as being as physically weak as everyone else, but also an ‘unusual’ person regarding mental strength, exemplifies navigation of the ‘sameness versus difference’ dilemma. The participants' descriptions of how they did not feel changed by age reflected continuity in spite of physical and social changes (Kaufman, Reference Kaufman1993). Our results also illuminate the participants' strategies to adapt to change and manage their everyday lives, resourcefulness, creative adaptation and resistance. Participants sometimes positioned advance age as a resource. This suggests that the older people in this study were not only the same people as before, but were also changed by the years that they had lived. As Bamberg (Reference Bamberg2011: 16) describes, identity is a process of constant change, although with the potential of resulting in a sense of constancy and sameness.
The narrative positioning analysis revealed how three of the participants negotiated the initial positioning of themselves as home care service users and (re)positioned themselves as ‘house owner’, ‘independent’ and ‘privileged’. These results are consistent with other studies showing that older people positioned themselves both as home care service users and autonomous and active agents (Hammarström and Torres, Reference Hammarström and Torres2010; Lloyd et al., Reference Lloyd, Calnan, Cameron, Seymour and Smith2014). Previous studies have demonstrated differences in the power balance between a home care service user and a service provider, often in favour of the service provider (Öresland et al., Reference Öresland, Määttä, Norberg and Lützén2011; Martinsen et al., Reference Martinsen, Norlyk and Gramstadin press). Older people might thus experience a loss of control over their environment, and home care staff do not always take the initiative to promote older service users' agency and dignity (Martinsen et al., Reference Martinsen, Norlyk and Gramstadin press). Ella's story demonstrates that the power balance between a home care service user and a service provider might be fluid and changeable over the course of a relationship, and perhaps even in a particular encounter. Similar results were reported by Witsø et al. (Reference Witsø, Ytterhus and Vik2015), who described how older people could take control in situations in which they experienced their dignity as threatened.
Other results from this study, such as Laila's carefulness to avoid future falls, Ella's insistence on continuing to keep her home clean and John's reflections on future care needs, exemplify how the older people in this study narrated resilience as a way of moving forward. This corroborates previous research demonstrating how older people have emphasised ‘keeping going’ in the context of chronic joint pain (Richardson et al., Reference Richardson, Grime and Ong2014) and frailty (Skilbeck et al., Reference Skilbeck, Arthur and Seymour2018), but it contrasts with descriptions of resilience as related to ‘bouncing back’ by means of ‘returning back to a specific level, following an initial decline’ (Angevaare et al., Reference Angevaare, Roberts, van Hout, Joling, Smalbrugge, Schoonmade, Windle and Hertogh2020: 5). Accepting one's own vulnerability, and thus accepting help and support, might contribute to adjusting to adversity (Janssen et al., Reference Janssen, Regenmortel and Abma2011). Accepting one's vulnerability might also lead to taking action to influence outcomes of anticipated future losses (Janssen et al., Reference Janssen, Regenmortel and Abma2011) and enable the continued management of everyday life in times of change.
This study shows that engaging with narrative accounts provides insight into older people's own perceptions of their strengths and vulnerabilities. Person-centred care, described as the gold standard in approaches to care, is co-ordinated around people's needs and preferences (Nolte et al., Reference Nolte, Merkur, Anell, Nolte, Merkur and Anell2020). Our results highlight the potential of storytelling in relation to person-centred care, and the goal of addressing the whole person including the person's resources (Ministry of Health and Care Services, 2017). Care providers and policy makers need to acknowledge that older people's narratives are nuanced and complex. To enable older people to live at home and feel safe, local authorities must consider whether home care staff have the opportunity and the knowledge to prioritise person-centred care and engagement in older people's narratives.
Methodological considerations
A risk when focusing on resilience is to underplay the struggles and disadvantages of people who live with health challenges and loss, and overemphasise people as ‘survivors’ regardless of structural and contextual factors (Wild et al., Reference Wild, Wiles and Allen2013). The social and material living conditions for older people who live alone are diverse, and we did not include considerations of living conditions in our analysis. Participation in the present study required the motivation and capability to participate in three interviews over a period of eight months. The participants had access to health-care services, and they all received some additional support from family and/or friends. Further, our analysis drew on concepts prioritising older people's strengths compared to their vulnerabilities. The results of this study need to be considered in this context. Nevertheless, when resilience is conceptualised as the balancing of strengths and vulnerabilities across a range of contexts, the focus shifts from individual characteristics and the risk of blaming people for not ‘achieving’ resilience (Wiles et al., Reference Wiles, Wild, Kerse and Allen2012: Richardson et al., Reference Richardson, Grime and Ong2014). We believe that the main strengths of this study are the quality of the data generated through three interviews with each participant and the author group's diverse clinical, theoretical and methodological expertise, in addition to the dialogues and discussions we had with the expert team.
Conclusion
By taking a micro-analytical perspective on resilience, this study has provided new insight into how older people who live alone, use home care services and are identified by home care professionals as being frail, manage their everyday lives. The study shows that older people's experiences of frailty are not static but negotiated. An older person may at times or in some contexts experience frailty, but not in others. By engaging with the older people's narratives about their everyday lives, the study has contributed to a growing knowledge base about the importance of storytelling in relation to care. Our results demonstrate how older people balance their vulnerabilities and strengths to manage their everyday lives. To provide person-centred care and enhance older people's wellbeing, care providers need to engage with older home care service users' own perceptions of their strengths and vulnerabilities. Engaging with older people's narrations and providing person-centred care might support older people's management of everyday life when living alone and ageing in place.
Acknowledgements
We would like to express our gratitude to the participants in this study who shared their experiences from everyday life. We would also like to thank the participants on our expert team for their valuable contribution to the analysis and Toril Agnete Larsen, who has contributed to the completion of the study and provided support from beginning to end.
Author contributions
KSV: conceptualisation, data generation, data management, analysis, writing the first draft, editing and finalising. JW: conceptualisation, analysis, editing and finalising. BHB: conceptualisation, analysis, editing and finalising. MK: conceptualisation, analysis, editing and finalising. AKH: conceptualisation, analysis, editing and finalising. KSM: conceptualisation, analysis, editing and finalising.
Competing interests
The authors declare no competing interests.
Ethical standards
The study was approved by the Norwegian Centre for Research Data (reference number 428509). The study did not require approval from The Regional Committee for Medical and Health Research Ethics (reference number 2019/405/REK nord).
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