Introduction
Frailty is a common but complex phenomenon that is approached differently (D’Avanzo et al. Reference D’Avanzo, Shaw, Riva, Apostolo, Bobrowicz-Campos, Kurpas, Bujnowska and Holland2017; Fried et al. Reference Fried, Ferrucci, Darer, Williamson and Anderson2004; Gobbens et al. Reference Gobbens, Luijkx, Wijnen-Sponselee and Schols2010; Markle-Reid and Browne Reference Markle-Reid and Browne2003; Rockwood and Mitnitski Reference Rockwood and Mitnitski2011; Sobhani et al. Reference Sobhani, Fadayevatan, Sharifi, Kamrani, Ejtahed, Hosseini, Mohamadi, Fadayevatan and Mortazavi2021). Three primary approaches to frailty can be distinguished. The first is the phenotypic biomedical approach that describes frailty as a physiological age-related state of increased vulnerability towards stressors (Fried et al. Reference Fried, Ferrucci, Darer, Williamson and Anderson2004). In the second, the accumulation of deficits approach, frailty results from the accumulation of deficits; the more disabilities or diseases someone experiences, the greater the risk of adverse health outcomes (Rockwood and Mitnitski Reference Rockwood and Mitnitski2011). The third, the multi-dimensional approach, defines frailty as a dynamic state in which an individual experiences losses in one or more domains of human functioning (e.g. physical, psychological, and/or social), which increases the risk of adverse outcomes (Gobbens et al. Reference Gobbens, Luijkx, Wijnen-Sponselee and Schols2010).
Interestingly, these approaches are based on professionals’ or theoretical perspectives on frailty in which the perspectives of older people themselves are often not included (Markle-Reid and Browne Reference Markle-Reid and Browne2003). In addition, frailty research and its theoretical perspectives are mainly quantitative, paying only minor attention to personal perceptions. However, personal perceptions can enrich the picture of frailty and clarify the meaning of frailty to individuals. Previous studies have shown that perspectives on frailty might differ among professionals, and between professionals and older people (D’Avanzo et al. Reference D’Avanzo, Shaw, Riva, Apostolo, Bobrowicz-Campos, Kurpas, Bujnowska and Holland2017; Sezgin et al. Reference Sezgin, O’Donovan, Cornally, Liew and O’Caoimh2019). Older people classified as frail according to medical standards do not always feel frail or do not recognise the term frailty (Becker Reference Becker1994; Grenier Reference Grenier2006). In addition, for older people, frailty encompasses more than an accumulation of physical deficits or problems (De Donder et al. Reference De Donder, Smetcoren, Schols, van der Vorst and Dierckx2019; Dury et al. Reference Dury, Dierckx, van der Vorst, Van der Elst, Fret, Duppen, Hoeyberghs, De Roeck, Lambotte, Smetcoren, Schols, Kempen, Zijlstra, De Lepeleire, Schoenmakers, Verté, De Witte, Kardol, De Deyn, Engelborghs and De Donder2018). For example, older people consider environmental factors, social contacts, and feeling down or anxious as essential factors of frailty (Bunt et al. Reference Bunt, Steverink, Douma, van der Schans, Hobbelen and Meijering2021; Dury et al. Reference Dury, Dierckx, van der Vorst, Van der Elst, Fret, Duppen, Hoeyberghs, De Roeck, Lambotte, Smetcoren, Schols, Kempen, Zijlstra, De Lepeleire, Schoenmakers, Verté, De Witte, Kardol, De Deyn, Engelborghs and De Donder2018; Van Campen Reference Van Campen2011). Moreover, older people often reject the term frailty for describing their state (Golbach et al. Reference Golbach, Hobbelen, Jager-Wittenaar and Finnema2022; Markle-Reid and Browne Reference Markle-Reid and Browne2003; Van Campen Reference Van Campen2011).
Different or even opposing perspectives on frailty at personal, organisational, and community levels might potentially hinder or negatively affect care for frail older people (Gwyther et al. Reference Gwyther, Bobrowicz-Campos, Luis Alves Apóstolo, Marcucci, Cano and Holland2018; Sadler et al. Reference Sadler, Potterton, Anderson, Khadjesari, Sheehan, Butt, Sevdalis and Sandall2019). The personal views and experiences of older people may predispose them to frailty and can direct their health behaviours (Bloem and Stalpers Reference Bloem and Stalpers2012; de Albuquerque Sousa et al. Reference De Albuquerque Sousa, Dias and Guerra2012). In addition, older people do not always acknowledge the risk of frailty that might hinder access to health and social care services (Bloem and Stalpers Reference Bloem and Stalpers2012; D’Avanzo et al. Reference D’Avanzo, Shaw, Riva, Apostolo, Bobrowicz-Campos, Kurpas, Bujnowska and Holland2017; Grenier Reference Grenier2006). Furthermore, older people’s, informal caregivers’, and professionals’ personal views and preferences have become increasingly important in health care, as reflected in recently widely used care methods such as shared decision-making (SDM) and person-centred care (Ekman et al. Reference Ekman, Swedberg, Taft, Lindseth, Norberg, Brink, Carlsson, Dahlin-Ivanoff, Johansson, Kjellgren, Lidén, Öhlén, Olsson, Rosén, Rydmark and Sunnerhagen2011; Elwyn et al. Reference Elwyn, Durand, Song, Aarts, Barr, Berger, Cochran, Frosch, Galasiski, Gulbrandsen, Han, Härter, Kinnersley, Lloyd, Mishra, Perestelo-Perez, Scholl, Tomori, Trevena, Witteman and Der Weijden2017). These methods are based on open communication and collaboration between care professionals and patients to create shared understanding and decisions (Dy and Purnell Reference Dy and Purnell2012; Ekman et al. Reference Ekman, Swedberg, Taft, Lindseth, Norberg, Brink, Carlsson, Dahlin-Ivanoff, Johansson, Kjellgren, Lidén, Öhlén, Olsson, Rosén, Rydmark and Sunnerhagen2011; Pel-Littel et al. Reference Pel-Littel, Snaterse, Teppich, Buurman, van Etten-jamaludin, van Weert, Minkman and Scholte op Reimer2021). However, the latter can be complicated and face barriers. For example, multiple professionals care for frail older people; however, not everyone knows the older patients’ preferences, which might hinder participation and SDM (Ekdahl et al. Reference Ekdahl, Andersson and Friedrichsen2010). Last, the involvement of citizens and patients is also increasing and evident at community and organisational levels (Beter Oud 2022; Grootjans et al. Reference Grootjans, Stijnen, Kroese, Ruwaard and Jansen2022; Raad van Ouderen 2019). At an organisational level, management strategies are affected by societal developments such as the shift in health care from a focus on diseases towards a capability approach (Hirani and Richter Reference Hirani and Richter2017; Prah Ruger and Mitra Reference Prah Ruger and Mitra2015; Tinetti and Fried Reference Tinetti and Fried2004). This approach provides an opportunity to act upon people’s abilities and to allow people to take an active role in decisions about their health and care trajectory, to improve their quality of life and wellbeing (Forsyth et al. Reference Forsyth, Maddock, Iedema and Lassere2010; Graffigna and Barello Reference Graffigna and Barello2018; Hirani and Richter Reference Hirani and Richter2017; Prah Ruger and Mitra Reference Prah Ruger and Mitra2015; Tinetti and Fried Reference Tinetti and Fried2004).
Therefore, paying attention to the perceptions of older people and key stakeholders regarding frailty in older people is needed. This may help understand frailty in different settings and from different points of view, which might lead to alignment between older people and the multiple stakeholders involved in caring for frail older people. In addition, this approach provides an opportunity to address the capabilities and preferences of older people themselves, which fits with recent developments in health care as implementing methods such as SDM and person-centred care. Therefore, in this integrative systematic review, we aim to answer the following research question: what are the perspectives of older people and multiple stakeholders such as health and social care professionals, informal caregivers, policymakers, and managers regarding frailty in old age?
Methods
Design
We conducted an integrative review to allow for a combination of various methods to synthesise the findings and contribute to the presentation of varied perspectives on frailty as the phenomenon under study (Whittemore and Knafl Reference Whittemore and Knafl2005). We included qualitative and mixed-method studies, as this review focuses on older people’s and stakeholders’ perceptions regarding frailty in the ageing population. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines in this research and prospectively registered this review in the PROSPERO database on 11 February 2021 [registration code CRD42021226224].
Abbreviations
In this article, RG refers to the first author, Rianne Golbach; SB to the second author, Steven Bunt; HJ to the third author, Harriët Jager-Wittenaar; EF to the fourth author, Evelyn Finnema; HH to the last author, Hans Hobbelen; and NK to Nanda Kleinenberg, a researcher who was involved as an independent reviewer during the search update.
Data selection
We systematically searched the international PubMed/MEDLINE, CINAHL, PsycINFO, Embase, and Web of Science databases using a predefined search strategy (Additional file 1). We developed the search strategy in collaboration with an information officer. It consisted of five groups of terms, namely ‘frailty’, ‘perception’, ‘stakeholders’, ‘qualitative or mixed-methods’ and ‘older people’. We conducted searches in December 2020 then updated in November 2022 and again in December 2023. In addition, we checked references and citations for relevant studies for inclusion.
We included studies if they met the following criteria and: (1) addressed perceptions of frailty by older people, informal caregivers, health and social care professionals, and policymakers or managers; (2) addressed frailty in the older population; (3) had a qualitative or mixed-methods design; (4) had full texts available; (5) were peer-reviewed; and (6) were published in English or Dutch. We limited the sample to those aged 60 years and older in agreement with the description of this population by the World Health Organization (2020). We excluded studies if they (1) were editorials, letters, opinion papers, conference abstracts or conference materials; (2) focused on frailty measurement tools; (3) aimed to define or operationalise frailty from a scientific perspective; (4) explored frailty from theoretical perspectives; or (5) addressed perceptions towards specific interventions, programmes or therapies for frailty.
We imported references selected from the database search into a reference manager (RefWorks) and eliminated any duplicates. Two researchers (RG and SB) independently screened titles and abstracts using the web-based application Rayyan (Ouzzani et al. Reference Ouzzani, Hammady, Fedorowicz and Elmagarmid2016). We included studies for full-text screening if one or both reviewers determined that the study was eligible for inclusion. They then screened the full-text studies for eligibility by reading and rereading them and included them if both reviewers agreed upon inclusion. The two reviewers (RG and SB) discussed any disagreements about inclusion or exclusion; if they could not achieve consensus, they consulted a third researcher (HH) and asked them to give the final verdict. We followed the same procedure during the search update, with HH as the second independent reviewer. During the full-text screening, we determined the level of agreement between the two reviewers with Cohen’s kappa (McHugh Reference McHugh2012). We documented the reasons for exclusion and completed a PRISMA flow diagram to visualise the screening process (Figure 1).
Figure 1. A flow diagram of the included studies.
After the selection process, one researcher (RG) performed the data extraction and a second researcher (SB) checked it. We used a predeveloped Excel sheet to document the extracted data, such as authors, year of publication, country, objectives, methodology, perspectives and study sample.
Quality assessment
We performed a critical appraisal of the studies and two independent reviewers (RG and SB) discussed it using the Joanna Briggs Institute–Critical Appraisal Checklist for Qualitative Research (JBI-QARI) (Joanna Briggs Institute 2020). The JBI-QARI is an assessment tool that can be applied to various qualitative research designs. To meet the trustworthiness criteria for the quality of qualitative studies, we added one item regarding transferability to the list: ‘11. Are connections made between the study’s data and broader community settings (i.e. transfer conceptual findings to other contexts)?’ (De Witt and Ploeg Reference De Witt and Ploeg2006). We used the quality assessment to gain an understanding of the strengths and weaknesses of the body of evidence.
Data analysis
We used a thematic synthesis to produce a textual report of older peoples’ and stakeholders’ perspectives on frailty (Braun and Clarke Reference Braun and Clarke2021). We performed the analysis in ATLAS.ti 22. After reducing the data to smaller units by line-by-line coding, we interpreted them analytically. Two reviewers performed the first steps of becoming familiar with the data and the initial coding (initial search RG and SB and search update RG and NK). They began coding the first study together and proceeded to code independently after agreeing on the coding process. They performed the coding inductively to avoid fitting the data into the scientific context of frailty or the researchers’ analytical preconceptions (Braun and Clarke, Reference Braun and Clarke2006, Reference Braun and Clarke2021). After completion of the independent coding and agreement between the reviewers, RG proceeded with the coding process, consulting either SB or NK when selecting segments or assigning specific codes was unclear. We determined definite decisions on the final themes and related subthemes with the consensus of the research team (RG, SB, HJ, EF and HH).
Results
We identified a total of 18,326 references from the searches. The removal of duplicates resulted in 6,029 references being eligible for abstract and title screening, after which we selected and screened 85 full texts, resulting in 52 included studies. During the full-text screening, we ascertained a Cohen’s kappa of 0.564, which indicated moderate agreement between the two reviewers (Belur et al. Reference Belur, Tompson, Thornton and Simon2021; McHugh Reference McHugh2012). The initial search resulted in 38 included studies, and the updated searches in November 2022 and December 2023 resulted in the addition of 7 and 6 studies suitable for inclusion, respectively. Checking references and citations yielded three additional studies, of which one was eligible. Hence, we included a total of 52 studies in this review. See Figure 1 for a flowchart of the search strategy.
Reasons for exclusion were that the outcomes, study design, language or publication type did not meet the inclusion criteria, or that the full text was unavailable. Of the studies, 33 presented older people’s perspectives on frailty; 27 included professionals’ perspectives; four addressed those of managers; and six addressed informal caregivers’ perspectives. Ten studies presented the perspectives of multiple stakeholders simultaneously. None of the included studies addressed the perceptions of policymakers. The characteristics of the included studies are presented in Table 1.
Table 1. Characteristics of the included studies
Notes:
a refers to the perspectives on frailty addressed in the study. Some studies included multiple perspectives.
b refers to the quality assessment score on JBI-QARI + additional item on transferability (total score: 11).
The synthesis of the perspectives of older people and stakeholders on the concept of frailty led to categorisation into six themes. Three of them covered the conceptualisation of frailty by older people and stakeholders: ‘the multi-dimensional nature of frailty’; ‘the dynamics of frailty’, which included the subthemes ‘imbalance’ and ‘the course of frailty’; and ‘the complexity of frailty’, which included the subtheme ‘frailty as dependent on context’. Subsequently, three themes addressed the relatedness of frailty with age, health and dependence: ‘frailty in relation to age’; ‘frailty in relation to health’; and ‘frailty in relation to dependence’. The themes and perspectives of older people and professionals on the concept of frailty are visualised in Figure 2.
Figure 2. The concept of frailty.
Understanding the concept of frailty
Perspectives of older people
Thirty-three studies addressed the perceptions of older people. Sixteen studies represented the perspectives of non-frail older people (Abley et al. Reference Abley, Bond and Robinson2011; Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019; Grenier Reference Grenier2005, Reference Grenier2006; Grøn Reference Grøn2016; Kaufman Reference Kaufman1994; Lekan et al. Reference Lekan, Hoover and Abrams2018; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Sarvimäki and Stenbock-Hult Reference Sarvimäki and Stenbock-Hult2016; Schoenborn et al. Reference Schoenborn, Van Pilsum Rasmussen, Xue, Walston, McAdams-Demarco, Segev and Boyd2018; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018; St John et al. Reference St John, McClement, Swift and Tate2019; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016). Two studies focused on the perspectives of pre-frail older people or individuals at risk for frailty (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Dury et al. Reference Dury, Dierckx, van der Vorst, Van der Elst, Fret, Duppen, Hoeyberghs, De Roeck, Lambotte, Smetcoren, Schols, Kempen, Zijlstra, De Lepeleire, Schoenmakers, Verté, De Witte, Kardol, De Deyn, Engelborghs and De Donder2018). Seventeen studies examined the perspectives of frail older people (Andreasen et al. Reference Andreasen, Lund, Aadahl, Gobbens and Sorensen2015; Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021, Reference Bjerkmo, Helgesen and Blix2023; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a, Reference Cluley, Martin, Radnor and Banerjee2021b; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Grenier, Reference Grenier2005, Reference Grenier2006; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Lloyd et al. Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020; Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012, Reference Nicholson, Meyer, Flatley and Holman2013; Pan et al. Reference Pan, Bloomfield and Boyd2019; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; Young et al. Reference Young, Ruddock, Harrison, Goodliffe, Lightfoot, Mayes, Nixon, Greenwood, Conroy, Singh, Burton, Smith and Eborall2022), and the frailty status of participants was unclear in four studies (Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Gee et al. Reference Gee, Cheung and Bergler2021; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023).
The multi-dimensional nature of frailty
Many older people consider frailty as a multifaceted construct characterised by physical aspects such as reduced health and psychological, cognitive or social limitations (Andreasen et al. Reference Andreasen, Lund, Aadahl, Gobbens and Sorensen2015; Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Bjerkmo et al. Reference Bjerkmo, Helgesen and Blix2023; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b; Dury et al. Reference Dury, Dierckx, van der Vorst, Van der Elst, Fret, Duppen, Hoeyberghs, De Roeck, Lambotte, Smetcoren, Schols, Kempen, Zijlstra, De Lepeleire, Schoenmakers, Verté, De Witte, Kardol, De Deyn, Engelborghs and De Donder2018; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019, Reference Gee, Cheung and Bergler2021; Lekan et al. Reference Lekan, Hoover and Abrams2018; Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012, Reference Nicholson, Meyer, Flatley and Holman2013; Pan et al. Reference Pan, Bloomfield and Boyd2019; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Sarvimäki and Stenbock-Hult Reference Sarvimäki and Stenbock-Hult2016; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020; Young et al. Reference Young, Ruddock, Harrison, Goodliffe, Lightfoot, Mayes, Nixon, Greenwood, Conroy, Singh, Burton, Smith and Eborall2022) that can coexist or reinforce one another (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013). For some older people, physical limitations were the most noticeable factors of frailty (Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a; Gee et al. Reference Gee, Cheung and Bergler2021; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Schoenborn et al. Reference Schoenborn, Van Pilsum Rasmussen, Xue, Walston, McAdams-Demarco, Segev and Boyd2018; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020; Young et al. Reference Young, Ruddock, Harrison, Goodliffe, Lightfoot, Mayes, Nixon, Greenwood, Conroy, Singh, Burton, Smith and Eborall2022). Social aspects, such as social contacts, were mentioned less by older people compared to physical and psychological factors (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Schoenborn et al. Reference Schoenborn, Van Pilsum Rasmussen, Xue, Walston, McAdams-Demarco, Segev and Boyd2018; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016). The same occurred for other factors such as emotional (Abley et al. Reference Abley, Bond and Robinson2011; Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013), spiritual (Lekan et al. Reference Lekan, Hoover and Abrams2018), nutritional (Andreasen et al. Reference Andreasen, Lund, Aadahl, Gobbens and Sorensen2015; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019), sensory (Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019) and environmental factors (Gee et al. Reference Gee, Cheung and Bergler2021), but to a greater extent. In addition, psychological, emotional and cognitive factors were described as interlinked (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018) or as separate dimensions (Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Pan et al. Reference Pan, Bloomfield and Boyd2019; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009).
In some studies, older people described the domains in which frailty manifests itself, for example physical, mental, cognitive, psychological, social or emotional frailty, as specific types of frailty, which indicates that someone can be frail in one or more domains (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019). Others expressed that other factors, for example psychosocial factors such as emotional wellbeing, mindset, strength, attitude, loneliness or depression, might mitigate or enhance frailty or vice versa (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Gee et al. Reference Gee, Cheung and Bergler2021; Lekan et al. Reference Lekan, Hoover and Abrams2018; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009).
The dynamics of frailty
We identified different perceptions of older people on the dynamics of frailty. Some older people emphasised the transitions between different stages of frailty (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Lekan et al. Reference Lekan, Hoover and Abrams2018; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018). They described that frailty can exist for shorter or longer periods, or described it as a condition you can go in and out of (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021, Reference Bjerkmo, Helgesen and Blix2023; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b). Another study focused on the notion that, while being frail, some physical, social and emotional connections were lost while others were sustained or new ones were created (Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013).
Imbalance
Several studies that incorporated older people’s perspectives indicated that frailty is an imbalance in the personal lives of individuals that might be related to health deficits but can also exist on an emotional level and can be affected, for example, by contextual challenges (Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Grenier Reference Grenier2006; Lekan et al. Reference Lekan, Hoover and Abrams2018; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023). The emotional state, similar to a ‘positive attitude’ or a ‘willing mind’, might mediate the frailty balance (Bjerkmo et al. Reference Bjerkmo, Helgesen and Blix2023; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b; Lekan et al. Reference Lekan, Hoover and Abrams2018). In addition, older people might experience an imbalance as a consequence of frailty, which requires adaptation to new situations in which losses are prevalent, adopting new daily routines or creating new ways of coping (Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012, Reference Nicholson, Meyer, Flatley and Holman2013; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018). Studies that focused on the experiences of older people living with frailty emphasised that uncertainty about the imbalanced state of frail older people might cause unease not only for those experiencing frailty but also for relatives (Lloyd et al. Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020; Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012).
The course of frailty
For many older people, frailty was characterised by a decline such as worsened health, limited mobility or fatigue (Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a, Reference Cluley, Martin, Radnor and Banerjee2021b; Lloyd et al. Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020; Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016) and indicated, for example, by losses in one or multiple domains (Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013). Some older people described how multiple deficits can accumulate into frailty (Dury et al. Reference Dury, Dierckx, van der Vorst, Van der Elst, Fret, Duppen, Hoeyberghs, De Roeck, Lambotte, Smetcoren, Schols, Kempen, Zijlstra, De Lepeleire, Schoenmakers, Verté, De Witte, Kardol, De Deyn, Engelborghs and De Donder2018; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013; St John et al. Reference St John, McClement, Swift and Tate2019). Others described frailty as phases of sudden decline and relatively stable phases (Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018).
In some studies, older people indicated frailty as end-stage, near the end of life, hard to reverse or bounce back from, and out of someone’s control (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Bjerkmo et al. Reference Bjerkmo, Helgesen and Blix2023; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Lekan et al. Reference Lekan, Hoover and Abrams2018; Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018). In contrast, some older people emphasised the personal actions someone can take to prevent or delay the onset of frailty, such as maintaining a healthy lifestyle and staying active (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b; Gee et al. Reference Gee, Cheung and Bergler2021; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Pan et al. Reference Pan, Bloomfield and Boyd2019; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009), engaging in social activities (Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016), having a positive mindset (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b; Lekan et al. Reference Lekan, Hoover and Abrams2018), being involved in spirituality and religious or traditional practices (Bjerkmo et al. Reference Bjerkmo, Helgesen and Blix2023; Gee et al. Reference Gee, Cheung and Bergler2021; Lekan et al. Reference Lekan, Hoover and Abrams2018; Young et al. Reference Young, Ruddock, Harrison, Goodliffe, Lightfoot, Mayes, Nixon, Greenwood, Conroy, Singh, Burton, Smith and Eborall2022) and making good nutritional choices (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Gee et al. Reference Gee, Cheung and Bergler2021; Lekan et al. Reference Lekan, Hoover and Abrams2018; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023).
The complexity of frailty
Some older people were unfamiliar with the term frailty. However, others emphasised that the meaning was vague or lacked specificity (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023).
Frailty as dependent on context
Multiple studies indicated that older people felt particularly frail in certain situations, emphasising that feeling frail is highly context dependent or context specific (Abley et al. Reference Abley, Bond and Robinson2011; Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021, Reference Bjerkmo, Helgesen and Blix2023; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019; Grenier Reference Grenier2005; Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012; Sarvimäki and Stenbock-Hult Reference Sarvimäki and Stenbock-Hult2016). Bjerkmo et al. (Reference Bjerkmo, Helgesen, Larsen and Blix2021), who studied frailty in older people in a rural Arctic context, emphasised the complex interplay between the ageing body and contextual challenges such as long distances and limited access to professional and informal help. Older people across a spectrum of frailty described the context specificity, which included feeling frail in situations when they were dependent on others, for example in health-care situations or on public transport, or at home when someone had no control over going out, for example due to mobility issues (Abley et al. Reference Abley, Bond and Robinson2011; Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021). Other studies emphasised the contextual elements affecting the frailty experience, including living conditions, the climate, societal changes, geographical distances and cultural understandings or customs (Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021, Reference Bjerkmo, Helgesen and Blix2023; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Gee et al. Reference Gee, Cheung and Bergler2021).
Frailty in relation to age
Older people indicated that the losses or decline related to frailty were considered a consequence of ageing (Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a, Reference Cluley, Martin, Radnor and Banerjee2021b; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Sarvimäki and Stenbock-Hult Reference Sarvimäki and Stenbock-Hult2016; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016) or that age can be a risk factor for or contribute to frailty (Pan et al. Reference Pan, Bloomfield and Boyd2019). Although frailty was generally associated with old age according to older people (Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Pan et al. Reference Pan, Bloomfield and Boyd2019; Sarvimäki and Stenbock-Hult Reference Sarvimäki and Stenbock-Hult2016; Schoenborn et al. Reference Schoenborn, Van Pilsum Rasmussen, Xue, Walston, McAdams-Demarco, Segev and Boyd2018; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016), some studies indicated that frailty can also be present in younger individuals (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Lekan et al. Reference Lekan, Hoover and Abrams2018).
Frailty in relation to health
Older people perceived physical health and changes in health or health conditions as strongly related to frailty (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Gee et al. Reference Gee, Cheung and Bergler2021; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Skilbeck et al. Reference Skilbeck, Arthur and Seymour2018; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016). They described health as a possible cause, a determinant, or as affecting someone’s experiences of their frailty (Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016). For some older people, frailty was challenging and difficult to distinguish from disability (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; St John et al. Reference St John, McClement, Swift and Tate2019; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016), and others described the impact of shorter or longer periods of illness or health issues that make someone experience frailty (Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021).
Frailty in relation to dependence
According to older people, frailty was related to age, health and dependence. In many studies, older people considered frailty as a loss of independence that is most often prompted by physical limitations such as mobility issues (Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b; Escourrou et al. Reference Escourrou, Herault, Gdoura, Stillmunkés, Oustric and Chicoulaa2019; Gee et al. Reference Gee, Cheung and Bergler2021; Lekan et al. Reference Lekan, Hoover and Abrams2018; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016). These may put them in situations where they are dependent on others and need to accept help, for example in care settings, on public transport or in transfers (e.g. climbing the stairs) (Abley et al. Reference Abley, Bond and Robinson2011; Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2021; Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013; St John et al. Reference St John, McClement, Swift and Tate2019; Young et al. Reference Young, Ruddock, Harrison, Goodliffe, Lightfoot, Mayes, Nixon, Greenwood, Conroy, Singh, Burton, Smith and Eborall2022). Dependency on others also shows itself in the performance of tasks that require digital skills, such as dealing with mobile phones or computers (Bjerkmo et al. Reference Bjerkmo, Helgesen, Larsen and Blix2021; Dury et al. Reference Dury, Dierckx, van der Vorst, Van der Elst, Fret, Duppen, Hoeyberghs, De Roeck, Lambotte, Smetcoren, Schols, Kempen, Zijlstra, De Lepeleire, Schoenmakers, Verté, De Witte, Kardol, De Deyn, Engelborghs and De Donder2018; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012). Others emphasised that one can become dependent in one aspect of life, such as physical activities, but remain independent in other aspects, such as maintaining control over situations (Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013).
Perspectives of professionals
Twenty-seven studies addressed the perceptions of professionals that included health-care professionals (Gee et al. Reference Gee, Cheung and Bergler2021; Grøn Reference Grøn2016; Kaufman Reference Kaufman1994; Lloyd et al. Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020; Robinson et al. Reference Robinson, Andrew, Kenny, Garrad, Thomson and Fisher2023; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020) such as physicians (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; McCarthy et al. Reference McCarthy, Winter and Levett2021; Naik et al. Reference Naik, Kunik, Cassidy, Nair and Coverdale2010; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Seeley et al. Reference Seeley, Glogowska and Hayward2023), allied health-care professionals (Abley et al. Reference Abley, Bond and Robinson2011; Barbosa and Fernandes Reference Barbosa and Fernandes2020; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011; Seeley et al. Reference Seeley, Glogowska and Hayward2023; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020) and nurses (Abley et al. Reference Abley, Bond and Robinson2011; Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Barbosa and Fernandes Reference Barbosa and Fernandes2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; McGeorge Reference McGeorge2011; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Seeley et al. Reference Seeley, Glogowska and Hayward2023; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022). In addition, social workers’ perspectives were addressed (Abley et al. Reference Abley, Bond and Robinson2011; Barbosa and Fernandes Reference Barbosa and Fernandes2020; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Manthorpe et al. Reference Manthorpe, Iliffe, Harris, Moriarty and Stevens2018; Naik et al. Reference Naik, Kunik, Cassidy, Nair and Coverdale2010; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018). The different professions are specified in Table 1.
The multi-dimensional nature of frailty
In many studies, professionals agreed upon the multi-dimensional nature of frailty (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019, Reference Gee, Cheung and Bergler2021; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Naik et al. Reference Naik, Kunik, Cassidy, Nair and Coverdale2010; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Robinson et al. Reference Robinson, Andrew, Kenny, Garrad, Thomson and Fisher2023; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011; Seeley et al. Reference Seeley, Glogowska and Hayward2023; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018) and emphasised that it cannot be distinguished by one single condition or characteristic. A combination of factors might trigger or contribute to frailty (Abley et al. Reference Abley, Bond and Robinson2011; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011).
Professionals accentuated the following dimensions of frailty: physical, psychological and social dimensions (Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019, Reference Gee, Cheung and Bergler2021; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011; Seeley et al. Reference Seeley, Glogowska and Hayward2023; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020). In addition, environmental, functional or economic factors were mentioned as components affecting frailty in late life (Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gee et al. Reference Gee, Cheung and Bergler2021; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Seeley et al. Reference Seeley, Glogowska and Hayward2023).
Cognitive factors, such as dementia or memory loss, were only minimally mentioned as a separate dimension (Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018). Cognitive factors were more often considered as psychological aspects of frailty (Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Manthorpe et al. Reference Manthorpe, Iliffe, Harris, Moriarty and Stevens2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020). In several studies, professionals initially or exclusively considered frailty as a physical state, referring to physiological factors or physical problems that might result in reduced functional levels (Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Manthorpe et al. Reference Manthorpe, Iliffe, Harris, Moriarty and Stevens2018; McGeorge Reference McGeorge2011; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022). In addition, professionals sometimes combined psychological and social factors into a psychosocial dimension of frailty (Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011).
On the one hand, professionals described the different dimensions of frailty as interacting or coexisting factors (Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gee et al. Reference Gee, Cheung and Bergler2021; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). On the other hand, they explained that a combination of conditions in multiple domains might lead to multi-system failure and put someone at risk, or might lead to more severe frailty (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Naik et al. Reference Naik, Kunik, Cassidy, Nair and Coverdale2010; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011).
The dynamics of frailty
Professionals perceived frailty as a mostly dynamic condition (Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gee et al. Reference Gee, Cheung and Bergler2021; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022). They expressed how it can change over time, described as older people having good and bad days or seasons when older people appeared frailer than usual (Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022).
Imbalance
Professionals described frailty as a precarious equilibrium that is affected by stressors or trigger events that might result in negative outcomes (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011; Seeley et al. Reference Seeley, Glogowska and Hayward2023). Professionals referred to this delicate balance as a tipping point in which anything, such as a fall or bereavement, can put older people over the edge (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). They considered this balance as a general state of risk that might be prompted by an accumulation of health conditions and an inadequate response to stressors that makes it more difficult for people to return to baseline levels of health (Abley et al. Reference Abley, Bond and Robinson2011; Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). Some professionals stated that the imbalance might also be expressed in other areas of life, for example between care needs and care provided or in activities of daily living (ADL) (Abley et al. Reference Abley, Bond and Robinson2011; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012).
The course of frailty
Professionals also mentioned different perspectives about the course of frailty. A view that was identified in the studies was the notion of change over time in frailty status that can be captured on a spectrum of different levels of severity, for example from mild to severe frailty (Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Manthorpe et al. Reference Manthorpe, Iliffe, Harris, Moriarty and Stevens2018; Naik et al. Reference Naik, Kunik, Cassidy, Nair and Coverdale2010; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). Some professionals described the course of frailty as a cycle in which a worsening decline affected by multiple factors arises over time and is characterised by negative outcomes (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). In addition, most professionals agreed that frailty is challenging to reverse. However, the onset of frailty can be delayed or postponed, such as by remaining physically and socially active and/or with medication, nutritional interventions, and the right care and support (Abley et al. Reference Abley, Bond and Robinson2011; Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Gee et al. Reference Gee, Cheung and Bergler2021; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; McGeorge Reference McGeorge2011; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022).
The complexity of frailty
In several studies, professionals emphasised the complexity of frailty (Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011; Seeley et al. Reference Seeley, Glogowska and Hayward2023; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018), such as regarding the interactions between and within its multiple facets (Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019, Reference Gee, Cheung and Bergler2021; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; McGeorge Reference McGeorge2011). In addition, some professionals accentuated the difficulty in defining frailty since it is difficult to distinguish from other conditions (Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020) and they were not familiar with the term or thought it was imprecise (Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022).
Frailty as dependent on context
Furthermore, according to professionals, the context seemed important regarding frailty’s manifestation, course and adaptability (Abley et al. Reference Abley, Bond and Robinson2011; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Kaufman Reference Kaufman1994; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022). They emphasised, for example, the differences in living conditions, social relationships, cultural differences and contacts with services that might influence frailty in older people in different ways depending on the situation (Abley et al. Reference Abley, Bond and Robinson2011; Gee et al. Reference Gee, Cheung and Bergler2021; Kaufman Reference Kaufman1994; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022). In addition, professionals’ contextual factors might affect the way they perceive or deal with frailty, as indicated by their workplace or educational background (Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022).
Frailty in relation to age
Professionals described frailty as strongly related to ageing (Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Barbosa and Fernandes Reference Barbosa and Fernandes2020; Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Robinson et al. Reference Robinson, Andrew, Kenny, Garrad, Thomson and Fisher2023; Seeley et al. Reference Seeley, Glogowska and Hayward2023; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022) and acknowledged that it is one of the greatest contributing factors or a risk factor for frailty (Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018). In addition, frailty was described as an inevitable consequence or even a synonym for ageing (Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022). In contrast, in some studies, professionals emphasised that frailty cannot be explained by age alone (Coker et al. Reference Coker, Martin, Simpson and Lafortune2019; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012).
Frailty in relation to health
Professionals also related frailty to physical health and indicated that it develops as underlying medical conditions accumulate uniquely within patients, shifting patients on the frailty spectrum to more severe frailty (Avgerinou et al. Reference Avgerinou, Kotsani, Gavana, Andreou, Papageorgiou, Roka, Symintiridou, Manolaki, Soulis and Smyrnakis2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). In addition, health conditions such as comorbidities can be a risk for frailty or vice versa (Canbolat Seyman and Sara Reference Canbolat Seyman and Sara2022; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019, Reference Gee, Cheung and Bergler2021). Other professionals emphasised the large variation among patients, some incredibly frail with only one health condition and others with multiple conditions managing quite well (Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018).
Frailty in relation to dependence
According to professionals, frailty was strongly associated with increased dependence in everyday life (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Barbosa and Fernandes Reference Barbosa and Fernandes2020; Gee et al. Reference Gee, Cheung and Bergler2021; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; McCarthy et al. Reference McCarthy, Winter and Levett2021; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022), such as relying on assistance in performing ADL (Gee et al. Reference Gee, Cheung and Bergler2021; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011; Voie et al. Reference Voie, Blix, Helgesen, Larsen and Mæhre2022). Some professionals emphasised that the loss of independence also affects other aspects such as mental health and can exacerbate frailty (Coker et al. Reference Coker, Martin, Simpson and Lafortune2019).
Perspectives of managers
Four studies addressed the perceptions of managers. Three studies recruited managers of health-care centres (Grøn Reference Grøn2016; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Schreuders et al. Reference Schreuders, Spilsbury and Hanratty2020) and one study interviewed social-care managers (Manthorpe et al. Reference Manthorpe, Iliffe, Harris, Moriarty and Stevens2018). In three studies, managers’ perceptions were combined with the perceptions of other stakeholders (e.g. other professionals), which provided no clear impression of their point of view (Grøn Reference Grøn2016; Kennedy et al. Reference Kennedy, Galvin and Horgan2021; Manthorpe et al. Reference Manthorpe, Iliffe, Harris, Moriarty and Stevens2018). Managers in the third study described frailty, among other terms, as ‘not sufficiently specific as to be useful’; in other words, frailty can mean different things to various people and therefore does not provide beneficial information for enhancing decisions in care management (Schreuders et al. Reference Schreuders, Spilsbury and Hanratty2020). Additionally, perspectives on frailty differed among managers, which could lead to inequitable care for frail older people (Schreuders et al. Reference Schreuders, Spilsbury and Hanratty2020).
Perspectives of informal caregivers
Six studies addressed the perceptions of informal caregivers next to those of professionals and/or older people (Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a; Kaufman Reference Kaufman1994; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Lloyd et al. Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020). Two studies included informal caregivers’ perspectives in narratives (Kaufman Reference Kaufman1994; Lloyd et al. Reference Lloyd, Haraldsdottir, Kendall, Murray and McCormack2020), two in focus groups (Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020), and two in interviews with older people and their carers (Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023). None of the studies specified their perspective separately. Informal caregivers together with older people emphasised the multi-dimensional and dynamic nature of frailty. Initially, they recognised the physical factors and, in addition, mentioned those that are social and psychological alongside cognitive, pharmaceutical, and nutritional factors (Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020). According to older people and informal caregivers, frailty was characterised by a reduced ability to respond to stress (van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020). Although frailty was considered a sudden decline on several levels, people emphasised that it can be delayed and prevented (Kaufman Reference Kaufman1994; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Shaw et al. Reference Shaw, Gwyther, Holland, Bujnowska-Fedak, Kurpas, Cano, Marcucci, Riva and D’Avanzo2018; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020). Older people and informal caregivers emphasised the link between frailty, overall health declines, and independence (Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021a; van Damme et al. Reference Van Damme, Neiterman, Oremus, Lemmon and Stolee2020).
Discussion
In this systematic integrative review, we provided an overview of the perspectives of older people, health- and social-care professionals, informal caregivers and managers regarding frailty. We identified six main themes, reflecting the perspectives of older people and stakeholders: the multi-dimensional nature of frailty, the dynamics of frailty, the complexity of frailty and frailty in relation to age, health, and dependence. Although the studies showed substantive similarities in how older people and professionals view frailty, for example regarding its multi-dimensional nature or the strong relationship between frailty and age, they showed differences in how themes were interpreted.
The differences in perspectives were evident in how older people, in contrast to professionals, perceived frailty as an imbalance in their personal lives and recognised that someone’s emotional state might affect the frailty balance and their way of dealing with decline (Grenier Reference Grenier2006; Lekan et al. Reference Lekan, Hoover and Abrams2018). Professionals characterised frailty as an imbalance in health status that is mainly triggered by stressors or events such as a urinary tract infection, the loss of a spouse, a fall, or hospital admission (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). These events can shift people from a stable state to an imbalance in which they become frail and have difficulty recovering (Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011).
In addition, older people and professionals emphasised the strong relationship between frailty and increased dependence; however, their focus differed. Older people accentuated ‘dependence on others’, indicating a specific role in which they rely on the help of others (Abley et al. Reference Abley, Bond and Robinson2011; Nicholson et al. Reference Nicholson, Meyer, Flatley and Holman2013; St John et al. Reference St John, McClement, Swift and Tate2019). Professionals described frailty on a more practical level, where frail older people require assistance in performing ADLs or are potentially dependent on resources such as using a walking aid or moving a bed to the first floor (Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; Korenvain et al. Reference Korenvain, Famiyeh, Dunn, Whitehead, Rochon and McCarthy2018; Obbia et al. Reference Obbia, Graham, Duffy and Gobbens2020; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). Incorporating the different interpretations of the concept of frailty according to the perspectives of older people and professionals might lead to a more comprehensive understanding of frailty since the knowledge and expertise of professionals might be complemented by the daily experiences of people living with frailty.
Perceptions originate from subjective experiences and emerge from interactions with our environment (Grishina Reference Grishina2010), which might affect the subjective meanings that older people and professionals assign to frailty and explain the differences in interpretations of the concept of frailty. In general, we found that older people discuss frailty from their own lived experiences or personal interpretations, which are guided by the emotional aspects of their perceptions of frailty, that is, the insider or emic perspective (Spiers Reference Spiers2000). In contrast, professionals’ perspectives mainly contained elements of their knowledge, expertise or experiences in practice with frail older people, indicating an external evaluation or practical view of frailty, that is, the outsider or etic perspective (Spiers Reference Spiers2000). The insider’s perspective of older people reveals challenges experienced by frail older people and the choices they make regarding dealing with frailty (Spiers Reference Spiers2000). In contrast, the outsider’s perspective of professionals helps to clarify situations, for example by providing insights into factors related to and affecting frailty. Incorporating both perspectives might lead to a more comprehensive understanding of frailty and provide possible guidance for coping with or managing frailty in later life.
Older people, professionals and managers consider frailty a complex phenomenon with challenges in how to approach and deal with it. According to professionals, the complexity is evident in the unpredictable interaction between the multiple factors that define frailty (Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; McGeorge Reference McGeorge2011) and, according to professionals and older people, in the specific contexts or situations in which frailty manifests itself (Abley et al. Reference Abley, Bond and Robinson2011; Archibald, Lawless, Gill et al. Reference Archibald, Lawless, Gill and Chehade2020; Gee et al. Reference Gee, Cheung, Bergler and Jamieson2019; Grenier Reference Grenier2005; Kaufman Reference Kaufman1994; Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012; Sarvimäki and Stenbock-Hult Reference Sarvimäki and Stenbock-Hult2016). This follows previous studies showing that frailty is characterised by the complex interplay among physical, social, psychological, cognitive and environmental factors (De Donder et al. Reference De Donder, Smetcoren, Schols, van der Vorst and Dierckx2019; Markle-Reid and Browne Reference Markle-Reid and Browne2003). To embrace the complexity and engage with its underlying logic, Greenhalgh and Papoutsi (Reference Greenhalgh and Papoutsi2018) argue that we must recognise the changing interrelationships between components of complex systems (Cristancho Reference Cristancho2016; Greenhalgh and Papoutsi Reference Greenhalgh and Papoutsi2018), such as the multiple dimensions and interacting factors of frailty. To deal with that complexity, it can be helpful to approach frailty from a systems approach, which requires a systems mindset.
A systems mindset, based on systems engineering and employed in medical education, suggests that individual components interact and work together as a whole (Cristancho Reference Cristancho2016; Gormley and Fenwick Reference Gormley and Fenwick2016). This approach raises awareness of the changing conditions or contexts, which presents challenges in constantly having to reassess and interpret the situation (Cristancho Reference Cristancho2016; Greenhalgh and Papoutsi Reference Greenhalgh and Papoutsi2018). A systems mindset demands an approach in which the perspectives of older people and the different stakeholders involved in their ecosystem, such as professionals, informal caregivers, and managers, are crucial in understanding how situations work amid disturbances (Cristancho Reference Cristancho2016). To understand and manage the complexity of frailty, a systems mindset can provide insights. In addition, a systems mindset might allow capability and resilience to manage the unknown, unexpected, and emerging features of frailty (Cristancho Reference Cristancho2016; Greenhalgh and Papoutsi Reference Greenhalgh and Papoutsi2018).
The perspectives of both older people and professionals acknowledge the level of dependence as experienced or noticed in frail older people; however, although closely related, little attention is paid to frailty in relation to functioning. It is known that frailty not only occurs with decline or losses in one or multiple domains of human functioning but also affects functioning on several levels, such as impaired functioning in ADLs, performance decline, or diminishing self-reported functioning (Gobbens et al. Reference Gobbens, Luijkx, Wijnen-Sponselee and Schols2010; Puts et al. Reference Puts, Lips and Deeg2005). Professionals emphasise increased dependence on ADL performance and reliance on assistance; for older people, the relationship of ‘dependence on others’ is more central. Functioning remains underexposed in the perspectives of older people and professionals. However, we advocate an approach that more strongly focuses on the capabilities and the functional ability of frail older people (Meijering et al. Reference Meijering, van Hoven and Yousefzadeh2019; Prah Ruger and Mitra Reference Prah Ruger and Mitra2015; World Health Organization 2020), in which maintaining certain levels of functioning or even improving them might be possible. Therefore, insights into the levels of functioning of frail older people and opportunities to maintain or restore these levels are desirable, especially since older people perceive the surrender of independence and thereby dependence on others as an important pillar of frailty.
Older people’s and professionals’ perceptions largely reflect the ideas that tend to prevail regarding frailty in old age, for example, dependency, negative outcomes, imbalance, and decline (Cluley et al. Reference Cluley, Martin, Radnor and Banerjee2021b; De Donder et al. Reference De Donder, Smetcoren, Schols, van der Vorst and Dierckx2019), which raises questions about the ideas of frailty that are still prevalent among older people and stakeholders and additionally about how we manage frailty in old age. In this review, we found that the perspectives of older people and professionals reflected frailty as an imbalance characterised by decline rather than an imbalance that can be restored. The negative frames prevalent in the literature on frailty and in the public debate might stereotype frail older people, but they also provide opportunities to address frailty more constructively. Images and perceptions can be detrimental to individuals experiencing frailty or self-identifying as frail, for example due to worsening health status, negative thoughts, or disengagement from physical and social activities (Richardson et al. Reference Richardson, Karunananthan and Bergman2011; Warmoth et al. Reference Warmoth, Lang, Phoenix, Abraham, Andrew, Hubbard and Tarrant2016). Although frailty is often perceived negatively, opportunities for positive outlooks, self-management, and recognition of the wishes and needs of frail older people are reflected in older people’s and professionals’ perspectives. Both older people and professionals consider frailty as a condition that might be preventable or can be delayed (Abley et al. Reference Abley, Bond and Robinson2011; Ambagtsheer et al. Reference Ambagtsheer, Archibald, Lawless, Mills, Yu and Beilby2019; Archibald, Lawless, Ambagtsheer et al. Reference Archibald, Lawless, Ambagtsheer and Kitson2020; Gustafsson et al. Reference Gustafsson, Edberg and Dahlin-Ivanoff2012; McGeorge Reference McGeorge2011; Nimmons et al. Reference Nimmons, Pattison and O’Neill2018; Pan et al. Reference Pan, Bloomfield and Boyd2019; Puts et al. Reference Puts, Shekary, Widdershoven, Heldens and Deeg2009; Roland et al. Reference Roland, Theou, Jakobi, Swan and Jones2011). In addition, older people emphasised the ability to retain capacity while being frail or to create new connections to the world around them, for example by allowing a level of interdependence on others (Nicholson et al. Reference Nicholson, Meyer, Flatley, Holman and Lowton2012, Reference Nicholson, Meyer, Flatley and Holman2013). We believe that a capability approach that allows for a focus on personal abilities and the potential benefits in addition to losses might help restore frail individuals’ imbalances (D’Avanzo et al. Reference D’Avanzo, Shaw, Riva, Apostolo, Bobrowicz-Campos, Kurpas, Bujnowska and Holland2017; De Donder et al. Reference De Donder, Smetcoren, Schols, van der Vorst and Dierckx2019).
Strengths and weaknesses
One of the strengths of this integrative systematic review was the inclusion of studies with a wide range of philosophical backgrounds or epistemological models underpinning the authors’ perspectives or methods, such as ethnographical, phenomenological, or constructivist. The inclusion of all types of studies led to a comprehensive synthesis for a broad understanding of frailty.
In addition, we used a robust protocol. To enhance the internal validity, we registered the protocol in the PROSPERO database before conducting the review.
However, the current study also has some limitations. First, the perspectives of managers, policymakers, and informal caregivers on the concept of frailty are underrepresented in the literature. None of the included studies incorporated the perspectives of policymakers, and those of informal caregivers were combined with those of older people in the included studies and thus could not be distinguished. The perspectives of managers were addressed separately in only one study. We showed the findings of these subgroups in the results. However, we could less extensively describe their perspectives compared to the perspectives of older people and professionals, which have been studied more extensively.
Second, we analysed the results on a group level and distinguished the stakeholders involved in the care of frail older people. Cultural and professional backgrounds that may have influenced perspectives were not specified in every study or not to the same extent. However, differences and similarities in perceptions might be found not only between stakeholders but also between and within professions or between groups of stakeholders from the same or different cultural backgrounds (Seeley et al. Reference Seeley, Glogowska and Hayward2023). Therefore, some caution is required in interpreting the results.
Implications for practice and future research
Given the major challenges ahead in health care, such as increased participation, optimal SDM, and the important role of the patient network, the perspectives of policymakers, managers, and informal caregivers on the concept of frailty should be incorporated into research to a larger extent, to enrich the image of frailty in old age.
Although we found a base for a shared understanding of frailty between stakeholders, some caution is required because of the complexity and the considerable heterogeneity in the manifestation and experiences of frailty in old age. Therefore, we emphasise the importance of contextual factors and the different (etic and emic) sources of knowledge that are used and upon which decisions are made. In addition, the studies included in this review were mainly from Western countries; specific information on the perceptions of minorities or non-Western cultures is lacking, except for some studies (Barbosa and Fernandes, Reference Barbosa and Fernandes2020; Bjerkmo et al. Reference Bjerkmo, Helgesen and Blix2023, Reference Bjerkmo, Helgesen, Larsen and Blix2021; Gee et al. Reference Gee, Cheung and Bergler2021; Lim et al. Reference Lim, Østbye, Seah and Aloweni2023; Su et al. Reference Su, Hung, Hsu, Liu, Chao and Chiou2023). Therefore, we argue for further research on more diverse research populations and the influence of contextual factors.
In addition, our results show that the perspectives on frailty of multiple stakeholders can lead to multiple corresponding or opposing perspectives on frailty. Therefore, we suggest a systems approach that incorporates the multiple perspectives on frailty, contexts, and the individual capacities of older people. This challenges health care to encourage open dialogue between older people and care professionals to explore foundations for a situation-specific shared understanding, which might strengthen the basis for SDM and person-centred care.
Conclusion
The overview provided in this systematic integrative review resulted in six themes reflecting the perspectives of older people and stakeholders towards frailty: the multi-dimensional nature of frailty, the dynamics of frailty, the complexity of frailty, and frailty in relation to age, health, and dependence. The results afford opportunities for a shared understanding of frailty as a multi-dimensional, dynamic, and complex concept. However, differences at the interpretational level can lead to mutual discrepancies in the understanding of frailty, which can complicate care relationships and hinder care for frail older people. Nonetheless, the findings offer opportunities to encourage a dialogue between older people and the stakeholders involved in caring for frail older people. We advocate a systems approach that allows multiple perspectives on frailty to form a comprehensive picture and is flexible to changing circumstances and contexts. This would create opportunities to genuinely embrace older people’s perceptions and experiences in practice. In that case, we might develop a situation-specific shared understanding as grounds for strengthening SDM and person-centred care.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S0144686X2400028X.
Acknowledgments
We acknowledge information officers Karin Sijtsma from the Central Medical Library UMCG and Sabine van der Ham from the Hanze University of Applied Sciences for their assistance in setting up and implementing the search strategy. In addition, we thank researcher Nanda Kleinenberg for her role as an independent reviewer in the coding process during the search update.
Author contributions
The authors all contributed to the conception and design of this study, the analysis and interpretation of the data, the drafting of the manuscript, and the approval of the version to be published.
Financial support
This research is part of FAITH research, a SPRONG programme funded by Regieorgaan SIA.
Competing interests
The authors declare no competing interests.
Ethical standards
This study was performed following the principles of the Netherlands Code of Conduct for Research Integrity.
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