Older Adults' Perceptions of Frailty Language: A Scoping Review

Abstract

This scoping review synthesized perceptions of frailty language, classification, the meaning of the term frailty and potential implications amongst community-dwelling older adults.

Eight studies were included in the review and three core themes were identified: 1) understanding frailty as a multi-dimensional concept and inevitable consequence of aging; 2) perceiving frailty as a generalizing and harmful label; and 3) resisting and responding to frailty. Recommendations include using person-centered language, discussing the term ‘frailty’ with caution, maintaining a holistic view of frailty as a multidimensional concept, and being aware of the potential consequences of labelling persons as frail.

Full text

Running Head: Perceptions of Frailty Language
Long Title: Older Adults’ Perceptions of Frailty Language: A Scoping Review
Authors:
Durepos, P., PhD Student1,2, lapospm@mcmaster.ca
Sakamoto, M., PhD Student1,3, marikoliette.sakamoto@alumni.ubc.ca
Alsbury, K., PhD Student1,4., kylaalsbury@gmail.com
Hewston, P., PhD1,5., hewstonp@hhsc.ca
Borges, J., MSc1,6., jlborges@mun.ca
Takaoka, A., MSc1,7. takaokam@mcmaster.ca
Affiliations:
1 Canadian Frailty Network Interdisciplinary Fellowship Program
2 McMaster University, Faculty of Health Sciences, School of Nursing, Hamilton, ON
3 University of British Columbia, School of Nursing, T201-2211 Westbrook Mall, Vancouver,
BC, V6T 2B5
4 University of Toronto, Faculty of Medicine, Rehabilitation Sciences Institute, Toronto, ON
5 McMaster University, Geriatrics Education Research and Aging Sciences Center, Hamilton,
ON
6 Memorial University, Health Ethics, St. John’s, NFLD
7 McMaster University, Faculty of Health Sciences, Health Research Methods, Evidence and
Impact, Hamilton, ON
Corresponding Author:
Pamela Durepos
HSC 3H48C, 1280 Main St. W.
Hamilton, ON, L8S 4K1
lapospm@mcmaster.ca
Acknowledgements: The authors are grateful for funding in the way of grants and scholarships
including: Alzheimer Society of Canada Brant, Haldimand-Norfolk, Hamilton-Halton Branch;
Canadian Frailty Network Interdisciplinary Fellowship 2018-19; Canadian Institutes of Health
Research 159269; Canadian Nurses Foundation; Registered Nurses Foundation of Ontario,
Mental Health Interest Group.
Disclosure Statement: The authors have no conflicts of interest to report.

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Abstract
There is growing interest in conceptualizing and diagnosing frailty amongst researchers,
health care professionals and policy-makers. Little is known however, about older adults’
perceptions of the term “frail” and the implications of being classified as frail. The purpose of
this scoping review was to map the breadth of primary studies and synthesize findings describing
community-dwelling older adults’ perceptions of frailty language, classification, the meaning of
the term frailty and potential implications. Eight studies were included in the review and three
core themes were identified: 1) understanding frailty as a multi-dimensional concept and
inevitable consequence of aging; 2) perceiving frailty as a generalizing and harmful label; and 3)
resisting and responding to frailty. Recommendations include using person-centered language,
discussing the term ‘frailty’ with caution, maintaining a holistic view of frailty as a
multidimensional concept, and being aware of the potential consequences of labelling persons as
frail.
Keywords: Frailty, perception, stigma, healthcare implications, language

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Older adults (over 65 years) are a growing segment of the Canadian population
(Canadian Institute for Health Information, 2011). Amongst older adults, frailty has emerged as a
characteristic with important implications for health and the Canadian healthcare system.
Worldwide, 10.7% of community-dwelling older adults are considered frail, and in Canada the
prevalence of frailty for those over 65 is greater at 23% (Collard, Boter, Schoever & Voshaar,
2012; Song, Mitnitski & Rockwood, 2010). While the term ‘frailty’ has been used for decades,
there remains a lack of consensus regarding the meaning of frailty and criteria for diagnosis
(Fisher, 2005). Broadly, the term frailty has been used to describe a person’s vulnerability and
susceptibility to health problems, and is commonly associated with aging (Theou, Walston &
Rockwood, 2015). Amongst health care professionals, frailty is increasingly being used as a
biomedical term and medical diagnosis, with evidence for decline in physiological and physical
functioning (Cosco, Armstrong, Stephan & Brayne, 2015). Contrasting definitions are being used
to operationalize frailty, which influences the diagnostic or assessment tools and language that
health care professionals are using to discuss frailty with older adults. Frailty has been defined as
an accumulation of deficits related to aging in multiple body systems, which results in a dynamic
risk ‘state’ (Maxwell & Wang, 2017; Rockwood & Mitnitski, 2011). Hence, an index of deficits
can be used to assess an individual’s state of frailty (Theou et al., 2015). In contrast, frailty has
also been described as a phenotype, and defined as a ‘clinical syndrome’ (Fried et al., 2001). The
presence of at least three of the following criteria: physical activity, self-reported exhaustion,
unintentional weight loss, slow walking speed, weakness in grip strength, slow walking speed,
and low physical activity, therefore suggests a syndrome of frailty within individuals.
Frailty, when objectively diagnosed or measured, can inform healthcare and support
clinical decision-making (McNally, 2017). As a significant predictor of health outcomes, frailty

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measures can also predict outcomes such as falls, reduced mobility, hospitalization and death,
more accurately than other measurable phenomena like advanced age or comorbidity status
(Fried et al., 2001; Maxwell & Wang, 2017). Certainly, recognizing and addressing frailty may
be advantageous and may support older adults to maintain, improve or avoid negative health
outcomes, and live in their preferred place for longer (Ofori-Asenso et al., 2019; Theou et al.,
2015). Nevertheless, there is also concern that frailty is a pejorative term that emphasizes the
challenging aspects of later life (McNally & Lahey, 2015).
Discourse around the ‘fourth age’ generalizes older adults and the last stage of life as a
period of decline (Gilleard & Higgs, 2010a). As such, classifying or labelling persons as frail
could be associated with negative connotations, contributing to age-related discrimination. There
is also evidence that negative perceptions of aging predict individuals’ mortality and poor health
outcomes (Warmoth, Tarrant, Abraham & Lang, 2016). According to stereotype embodiment
theory, stereotypes can become embodied and negatively influence health and overall
functioning (Levy, 2009). Internalizing a label of frailty has potential to bring about feelings of
guilt or inferiority (Ebrahimi, Wilhelmson, Ekland, Moore, & Jakobsson, 2013) and also to
influence health and healthcare utilization.
Research into frailty and related health care interventions is growing and researchers,
health care professionals and policy-makers are looking to frailty as a diagnostic and outcome
measure, significant to the well-being and independence of older adults (D’Avanzo et al., 2017).
Understanding the perceptions of older adults regarding frailty and classification (i.e., diagnosis,
labelling) is therefore essential when planning research and interventions, to ensure that frailty
language and practices are acceptable, and that classifying persons as frail does not act as a
stigmatizing or discriminatory label. To date, research examining older adults’ perceptions and

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understanding of the term ‘frail’ and frailty classification is limited, and findings have not been
synthesized. The purpose of this scoping review was therefore to: 1) map the breadth of primary
studies describing community-dwelling older adults and frailty language; 2) explore and
summarize perceptions of the term ‘frail’, the meaning of frailty and potential implications of
being classified as frail; and 3) contribute recommendations for the use of frailty language by
stakeholders.
Methods
The authors conducted a scoping review to describe the current state of research
exploring older adults’ perceptions and the meaning of the term ‘frail’. A methodological
framework defined by Arksey & O’Malley (2005) with refinements by Levac, Colquhoun &
O’Brien (2010) was used to inform the study. A scoping review was appropriate to explore the
breadth of research on this topic, synthesize findings from a variety of disciplines/study designs
and to produce recommendations relevant to multiple stakeholders.
Search strategy
Together with a university librarian, the authors developed a comprehensive search
strategy with keywords and MeSH terms. Healthcare databases MEDLINE, CINAHL,
EMBASE, Ageline, and PsychInfo were searched, and hand-searching was conducted for
additional articles within reference lists of included studies, existing networks, GoogleScholar
and relevant organizations (e.g., International Federation on Aging). Diverse sources of literature
representing research from an array of disciplines (including social sciences, biology, law,
medicine, nursing) were searched to explore frailty beyond a strictly biomedical definition
(Arksey & O’Malley, 2005).
Inclusion and exclusion criteria

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Included articles were: 1) primary qualitative, quantitative or mixed methods research
studies; 2) published in English, with full text available between January 1994 and February
2019; 3) describing the perceptions, meaning and perceived implications of frailty language (i.e.,
the term/word ‘frail’ or ‘frailty’), diagnosis (i.e., labelling, classifying or identifying); 4) of
community-dwelling (i.e., not living in long-term care), older adults’ (i.e., aged, frail, elderly, or
seniors). The authors elected to begin their search in 1994 because a seminal article
conceptualizing frailty was published at that timepoint (Rockwood, Fox, Stolee, Robertson &
Beattie, 1994). Articles were excluded if they were: 1) unavailable in English; 2) without full
text; 3) commentaries, editorials, opinion papers, or conference proceedings; 4) not sampling the
target population (i.e., older adults); or 5) not focused on the perceptions of frailty language.
Study selection and analysis
Titles and abstracts were initially screened for inclusion by single authors in DistillerSR
(Evidence Partners, Ottawa, Canada). The full text of selected articles was reviewed
independently by two authors for inclusion in the final sample. Disagreements were resolved
through discussion or consultation with a third author. Study descriptives (e.g., author, year,
method) were extracted and charted in Microsoft Excel in duplicate by two authors for rigour.
Data was analyzed through content analysis, meaning that authors read and re-read each article,
identified codes (i.e., meaningful units of data), classified data according to an agreed upon
coding framework, and then discerned common themes and patterns within and across articles to
address the study purpose. As a method of researcher triangulation and trustworthiness, each
author independently developed a coding framework, categorized the content of three articles
and met to reach consensus regarding a final coding framework through discussion. The
remaining articles were then each coded by two authors, with data extracted into an Excel

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spreadsheet. New codes and themes identified subsequently by authors were added to the coding
framework if agreed upon (Arksey & O’Malley, 2005; Levac et al., 2010; Patton, 2015).
Results
Sample descriptives
The initial search generated 4639 articles from online databases and hand searching of
reference lists. The authors reviewed n=73 full text articles in duplicate and included 10 articles,
representing N=8 unique studies in the final qualitative synthesis (see Figure 1). Included studies
were conducted in the United Kingdom (n=3), in Canada (n=1), the United States of America
(n=2), France (n=1) and the Netherlands (n=1) and were published most often in the Journal of
Aging Studies (n=2) and Ageing & Society (n=2). A qualitative (n=7) or mixed methods design
(n=1) was used for each study, with data was collected through interviews (n=8), observations
(n=2) and/or focus groups (n=1). Participants ranged in age from 55 to 98, with various cut-offs
used to define older adults, including over 55, 65, 75 or 80 years old. The proportion of female
participants (ranging from 44-100%) was greater than males on average. Study authors most
commonly defined frailty as a phenotype (n=4) according to Fried et al. (2001)’s definition, or as
an accumulation of deficits (n=2), based on the model by Rockwood & Mitnitski (2011). See
Table 1 for a description of the included studies.
Qualitative findings
Three core themes were identified through content analysis: 1) understanding frailty as a
multi-dimensional concept and inevitable consequence of aging; 2) perceiving frailty as a
generalizing and harmful label; and 3) resisting and responding to frailty.
Theme 1: Understanding frailty as a multi-dimensional concept and inevitable
consequence of aging. In general, frailty was described and understood by participants as a

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quality or state of being (Warmoth et al., 2016), and as a binary or dichotomous classification,
meaning that persons were either frail or not (Age UK, 2015). Participants commonly described
a pattern of events of ‘becoming frail’, whereby persons experienced a gradual decrease in their
abilities over time (Age UK, 2015; Becker, 1994; Skilbeck, Arthur & Seymour, 2018; Warmoth
et al., 2016). Some participants described a specific health event or a turning point, which caused
them to cross a threshold and become frail (Escourrou et al., 2017, 2019; Skilbeck et al., 2018).
Once frail, individuals were perceived as likely to experience serious illness and decline
(Grenier, 2006).
The process of becoming frail was commonly perceived as out of one’s control and an
inevitable part of the aging process (Age UK, 2015; Escourrou et al., 2019; Escourrou et al.,
2017; Grenier, 2006, 2007; Puts et al., 2009; Schoenborn et al., 2018; Warmoth et al., 2016). A
participant explained, “Frailty is not something that you can prevent, you cannot do anything, it
just happens when you get older" (Puts et al., 2009, p. 264). In contrast, participants classified as
‘not frail’ or ‘pre-frail’ tended to describe frailty as something that could be delayed or reversed
through strategies or “doing things” (Warmoth et al., 2016. p. 1494), like physical or social
activities.
Across all studies, participants described and understood the concept of frailty as having
several dimensions including physical, psychological/cognitive and social domains. The domains
were often understood as interrelated, whereby decline in one domain of function resulted in
losses in another domain (Escourrou et al., 2017, 2019; Grenier, 2006, 2007; Skilbeck et al.,
2018; Warmoth et al., 2016). In a single study, female participants emphasized the social and
psychological aspects of frailty as opposed to males, who limited descriptions of frailty to
physical, chronic, and co-morbid impairments (Puts et al., 2009).

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‘Physical frailty’ figured prominently within persons’ descriptions of frailty and older
age. Physical frailty was often described as a loss of mobility and requirement of assistive
devices, such as canes, walkers, and wheelchairs (Age UK, 2015; Escourrou et al., 2017, 2019;
Grenier, 2006, 2007; Puts et al., 2009; Schoenborn et al., 2018; Warmoth et al., 2016).
Participants often described individuals they perceived as frail as persons who are fragile, fall
often and easily sustain fractures (Age UK, 2015; Puts et al., 2009). The presence of
comorbidities (Puts et al., 2009) and appearance-related descriptors, including low body weight
and pale skin, were also used to describe individuals perceived as frail (Grenier, 2006, 2007; Puts
et al., 2009; Warmoth et al., 2016). A participant explained their understanding of frailty:
Frailty is frailty physically, I think frailty is someone whose bones may crack, …
someone who is slightly bent over and they, when they walk, it’s as though they’re not
sure their feet are going to find that solid ground there … [a person has] pallid
complexion [and is] withdrawn … not want[ing] to be a bother yet here I am. I am no
longer able to take care of myself…. (Grenier, 2007, p. 433).
‘Psychological frailty’ was described as referring to a person’s mood, attitude, self-
esteem and cognitive function. Having depressive thoughts, anxiety, fear, a negative attitude,
being unable to cope, and as having one’s identity threatened were examples of psychological
frailty described by participants (Becker, 19954; Grenier, 2006, 2007; Puts et al., 2009; Skilbeck
et al., 2018; Warmoth et al., 2016). As such, having a frail ‘state of mind’ was perceived as being
dependent on, and reflective of a person’s personality, attitude and outlook on life (Age UK,
2015; Schoenborn et al., 2018). Additionally, cognitive losses, such as forgetfulness or difficulty
concentrating, were perceived as characterizing psychological frailty (Escourrou et al., 2017,
2019; Puts et al., 2009). Decline and losses in psychological status were perceived as ultimately
contributing to an emotional experience that led to classification and self-identification as frail
(Grenier, 2006, 2007).

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‘Social frailty’ was described as loneliness, infrequent interactions (Puts et al., 2009),
and disengagement behaviours (Age UK, 2015; Warmoth et al., 2016), which compounded the
losses that can accompany later life. Individuals with frailty were described as withdrawing from
participation in social events, while at the same time being excluded from invitations to social
activities because of functional limitations (Warmoth et al., 2016). As such, social isolation was
described as both a cause and a result of frailty. Being excluded from social gatherings was
perceived as reducing motivation for participation in future social events, and as eliciting a
perpetuating pattern which led to further isolation (Warmoth et al., 2016). Participants explained
that social frailty was exacerbated by environmental constraints, including limited access to
transportation, poor building accessibility, and financial concerns (Age UK, 2015; Escourrou et
al., 2017, 2019). Facilities without wheelchair ramps, for example, were described as preventing
adults with immobility from attending social events and leading to social disconnection.
Regardless of the domain of frailty, whether physical, psychological or social, feelings of
loss were often associated with the sense of being frail. Examples of loss were linked to deficits
in function, mood and identity. The multiplicity of losses was perceived as accumulating, and
ultimately translating into the overall loss of independence, control, dignity, certainty,
confidence and one’s sense of personhood (Age UK, 2015; Grenier, 2006, 2007; Puts et al.,
2009; Warmoth et al., 2016).
Theme 2: Perceiving frailty as a generalizing and harmful label. Across all studies,
participants associated the terms ‘frail’ and ‘frailty’ with similar, negative age-related stereotypes
related to all domains (Schoenborn et al., 2018; Warmoth et al., 2016). In the Age UK report
(2015), a collage of words taken from interviews graphically illustrated the concept of frailty,
emphasizing an array of negative terms, representing participants’ views (p. 12). Physical

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stereotypes assumed that persons’ with frailty were all, “grey-haired, hunched, wobbly”
(Warmoth et al., 2016, p. 1490), using mobility and sensory aids, and were predominantly female
(Age UK, 2015; Puts et al., 2009; Schoenborn et al., 2018). Psychological stereotypes included
assumptions that persons with frailty all had poor cognitive functioning, memory loss, or
dementia (Warmoth et al., 2016). Overall, frailty was viewed as a term that homogenized unique
experiences of change and aging, and most participants viewed labeling or classifying persons as
frail as problematic. A participant explained:
Frailty is a generalization and I don’t think it has really any place in the medical
conversation…whatever the element that goes into making up frailty ought to be
discussed, but the generalization of frailty I don’t think is helpful at all (Schoenborn et
al., 2018, p. 3).
Participants also perceived that others (and even they themselves) held negative attitudes towards
frailty, which led to de-valuing persons with frailty as members of society and undermining these
persons’ opinions, capabilities or contributions. For example, a participant described that persons
were always, “thinking you weren’t good enough to do something” (Warmoth et al., 2016, p.
1490).
Participants were reported across the included studies as having strong negative
emotional reactions to discussions around frailty, and there was strong agreement that frailty was
an unwanted label. In some studies, it was explicitly noted that participants completely avoided
the use of the word frailty in describing their state of health, despite being classified as frail
according to validated tools (Age UK, 2015; Becker, 1994; Escourrou et al., 2017, 2019;
Grenier, 2006, 2007; Warmoth et al., 2016). Being referred to as frail met with considerable
offense, resistance and strong emotional reactions from participants (Age UK, 2015; Becker,
1994; Grenier, 2006, 2007; Puts et al., 2009; Schoenborn et al., 2018; Warmoth et al., 2016).
Schoenborn et al. (2018) reported that emotional reactions occurred more often in participants

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who were not frail, when compared to persons considered frail. For example, a participant who
was assessed as non-frail, fiercely rejected the idea of being labelled as frail, denoted by
exclamatory punctuation:
I am never sick, fortunately, my wife neither. I don't even know what it is like being in
bed sick. I have had the flu occasionally but that is not frailty. No, I am definitely not
frail, definitely not! (Puts et al., 2009, p. 263).
Similarly, another participant cautioned against applying the label because of its associated
stigma:
I don’t think you should label people as being frail um no, no I wouldn’t, wouldn’t want
to stigmatise people by saying ya know I think you’re frail um know you are getting older
and you can’t do as much as you perhaps would like to do (Warmoth et al., 2016, p.
1493).
Only a small subset of participants from the study by Schoenborn et al., (2018) did not find
‘anything wrong’ with the word frailty.
The term frail was also perceived as an identity faced by older adults and linked to
functional impairments (Becker, 1994). Self-identifying as frail or adopting an identity of frailty
was perceived as succumbing to a permanent loss of independence, control, and dignity (Age
UK, 2015; Becker, 1994; Escourrou et al., 2017, 2019; Skilbeck et al., 2018; Warmoth et al.,
2016). Warmoth et al. (2016) explained that self-identifying as frail meant to, “incorporate the
negative, and feared, views about older people as feeble, dependent and vulnerable” (p.1490). As
such, individuals avoided adopting the frailty identity. However, some participants did describe
adopting or accepting a frailty identity:
I’m frail in every sense of the word because of my incapacity, my lack of balance, my
inability to walk, to stand up, um no, no, I’m frail because I am. (Warmoth et al, 2016,
p. 1491).

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Self-identifying and being classified as frail were described as altering and lowering self-
perceptions, decreasing self-esteem, and affecting confidence in one’s abilities, strengths and
self-value (Escourrou et al., 2017, 2019; Warmoth et al., 2016). Developing a ‘fixed identity’ of
frailty (i.e., labelling oneself as frail) and ‘acting frail’ were perceived as carrying a negative risk
(Grenier, 2006; 2007; Schoenborn et al., 2018). In addition, altered self-perception and fixed
identity were perceived as leading to deterioration in health status (Puts et al., 2009; Schoenborn
et al., 2018). Across studies, tensions between changes to the physical body (i.e., external
identity) and perceptions of one’s self and personhood (i.e., internal identity) were highlighted
(Grenier, 2006, 2007; Puts et al., 2009). This was exemplified in Puts et al. (2009) where 6 out of
8 adults perceived themselves as less frail than their measured level or classification of frailty. A
participant justified that she should not be classified as frail, although others perceived her as
frail. She explained:
Even though I have a heart problem, I do what I want to do, all my own work and
everything. So, I don’t consider myself frail. I don’t want to consider myself frail
(Grenier, 2007, p. 7).
Theme 3: Resisting and responding to frailty. Participants described using coping
techniques, health behaviours and seeking or avoiding healthcare services as ways they resisted
and responded to becoming or being labelled as frail. A variety of coping techniques were
perceived as allowing participants to maintain a sense of control over their health and avoid
becoming frail when facing an uncertain and unpredictable future (Puts et al., 2009; Warmoth et
al., 2016). Strategies included engaging in predictable routines (Skilbeck et al., 2018), hiding
frailty by ‘keeping up appearances’ (Age UK, 2015), associating with younger people (Grenier,
2006, 2007), or conversely, exaggerating their limitations to acquire services which would
support their health (Warmoth et al., 2016).

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Coping strategies employed to facilitate adaptation to changing health included reshaping
perceptions of independence, for example, by comparing oneself to others with worse
impairments (Skilbeck et al., 2018; Warmoth et al., 2016), adjusting expectations of capabilities,
and finding creative ways to manage new impairments (Skilbeck et al., 2018). Some older adults
chose to form new supportive connections and relationships in their lives, focused on ‘keeping
busy’ or maintaining a strong mindset (Grenier, 2006, 2007). Others were interested in
discussing the concept of frailty, but wanted to avoid using the terms frail or frailty (Schoenborn
et al., 2018).
Some participants perceived that frailty could be a useful or motivating label or
diagnosis, bringing a person’s attention to vulnerabilities that they were previously unaware of
and encouraging them to seek healthcare and supportive services (Warmoth et al., 2016). A
single study reported that participants who self-identified as frail, and accepted a frailty identity
tended to be more open to discussing frailty than others (Schoenborn et al., 2018). In contrast,
participants who vehemently resisted discussing frailty were described as more likely to refuse
assistance like mobility aids (Skilbeck et al., 2018). Similarly, participants described as not frail
or pre-frail in a single study expressed that they would avoid health care professionals if the topic
of frailty and their frailty status was introduced (Schoeneborn et al., 2018). A participant
explained, “[I would] get another doctor. I’m dead serious” (Schoenborn et al., 2018, p. 4). Self-
identifying as frail and having fewer social interactions were also perceived as causing people to
reduce their use of healthcare services, to decrease healthy behaviours, amidst beliefs that
advancing frailty was inevitable and services/activities would not be beneficial (Puts et al.,
2009). As one participant in the Schoenborn et al. (2018) study explained:
When a physician would say to somebody [that he or she is frail]…would that have any
detrimental effect on the individual of start becoming more frail and start acting more

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frail?… Because psychologically that seeds been planted…, [the individual may think]:
‘I’m frail so I guess I’m just gonna have to sit in this chair and watch television 24 hours
a day (p. 4).
Discussion
To the authors’ knowledge, this is the first scoping review to map the breadth of primary
studies exploring perceptions of the word frailty amongst older community-dwelling adults. In
general, the articles in this scoping review demonstrate that perceptions, understandings and
experiences of the word and/or label ‘frail’ are closely aligned across sociological and
biomedical fields. Perceived as a generalizing term, frailty is described within the included
studies as reflecting negative stereotypes across domains of physical, psychological, cognitive,
and social function. While frailty is discussed as a multi-dimensional construct in all of the
studies, it is clear that increased emphasis on the social domain, particularly when it comes to
how frailty is measured, is required in the field of frailty studies.
Breadth of primary studies
Studies included in this scoping review were from a select number of Western countries,
which could be related to both aging trends in these locations and interest/specializations in
frailty research and measures within the United States, Canada and the UK. The scoping review
was also limited to studies published in English, and as such there is potential studies from
additional countries could have been excluded.
The few primary studies which were identified in this scoping review (n=8) suggests that
little research has been completed to explore the perceptions of older adults around frailty
language, the meaning of frailty and being classified as frail. This is concerning because research
into the science of frailty diagnosis and measurement is quickly advancing and assessing frailty
can provide valuable insight into the current and future well-being of older adults (Cosco et al.,

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2015). If the voices of older adults are not included in the discussion on frailty, there may be
limited uptake and interest in utilizing services or measures that are not perceived as aligning
with preferred language and priorities. Older adults in particular are often excluded from
participating in research due to barriers such as transportation, cognitive function, immobility
(Velzke & Baumann, 2017). However, research-funding bodies are cognizant of the benefits of
citizen engagement, and methods such as co-design, co-production and participation are
becoming expected elements of study design (Doolan-Noble, Mehta, Waters & Baxter, 2019).
Engaging citizens (in this case older adults) in research is necessary to support the development
of acceptable interventions, inform the use of preferred language, and promote the uptake of
services once publicly available (Velzke & Baumann, 2017).
Exploring the social domain of frailty
Participants across studies consistently described frailty as having social and
psychological domains and viewed symptoms of ‘social or psychological’ frailty as potent
indicators of overall frailty and wellbeing. Despite the importance placed on these domains of
frailty, the nine tools used to assess frailty within eight of the included studies sampled content
based on a variety of frailty models, domains and definitions and did not all address
psychological or social frailty. The most commonly used tools were the Frailty Index (n=2)
based on the accumulation of deficits model (Rockwood & Mitnitski, 2011), which does include
items sampling social frailty, and the Fried Frailty Phenotype (n=2), which focuses on primarily
physical criteria for frailty, without social or psychological items (Fried et al., 2001).
Assessing frailty solely based on physical criteria remains commonplace both in research
and clinical practice, with most of the content in frailty instruments sampling physical
characteristics and limiting or neglecting social or psychological factors (Sutton et al., 2016).

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Participants’ personal experiences and the perceived importance of social frailty in our study
findings support a conceptual model of social frailty (Bunt, Steverink, Olthof, van der Schans &
Hobbelen, 2017). Social frailty is defined as a “continuum of being at risk of losing or having
lost resources to fulfill social needs” (Bunt et al., 2017, p. 323). Factors described as contributing
to needs fulfillment including social or general resources, social behaviours and activities and
self-management abilities, are likely indicators for social frailty that can and should be
incorporated in frailty tools (Bunt et al., 2017), such as the recently published Fit-Frail Scale
(Theou et al., 2019) which incorporates several dimensions of frailty including the social and
psychological aspects of frailty mentioned by the participants of the studies in our review.
Critical perceptions of language and social meaning
Apart from social understandings of frailty, there are also culturally specific
understandings of frailty that should be explored. Variations exist in linguistic equivalencies, as
revealed in the Puts et al. (2009) article, where the word frailty does not exist in the Dutch
language and terms such as vulnerability and fragility are used instead. In fact, several languages
have variations of the term, which can be accompanied by slight differences in meaning
(Grenier, 2007). Interestingly, in French-speaking Québec, frailty has been discussed as perte
d’autonomie or loss of autonomy, and not frêle, which would be the direct translation (Grenier,
2007). Overall, these subtle differences highlight the tendency for frailty to be conceptualized as
a negative experience and demonstrate how easily it is associated with loss, regardless of
linguistic or cultural variations.
The primarily negative perceptions of aging and living with frailty described in the
articles included in this review contrasts findings from other research where older people who
are considered frail can “enjoy positive aspects of embodiment and maintain objective strengths”

17
(Pickard, 2018, p. 25). While some older adults may report this experience, the negative
connotations and understandings of a designation of frailty reported in this review are hard to
ignore, a perspective that has been similarly described in disability studies, where social forces
are perceived as shaping the experience of disability, in ways that highlight fragility and
vulnerability, and which are not adequately deconstructed or challenged (Burghardt, 2013). As
such, additional research on how to positively influence society’s shared views of aging and
frailty is needed, along with a critical examination of the unintended effects of frailty discourse
and assessment (Pickard et al., 2019).
Frailty as an imposed and generalizing label
By bringing older adults’ understandings and perceptions of frailty to the fore within this
review, it is evident that the term frailty is a label most often imposed on older people by others,
usually by healthcare providers. Frailty is described as an imposed identity and label by Higgs
and Gilleard (2014) who state that frailty “is made manifest through third party actions, not
through first person accounts” (p. 15). While effort is being made to use person-first language in
frailty research, the term itself remains a powerful designation that may not only serve to ‘other’
persons classified as frail, but also promulgates fourth age discourse and a negative social image
of later life (Gilleard & Higgs, 2010a; Higgs & Gilleard, 2014). Some scholars have argued that
frailty is a socially constructed label that is imposed on older adults (Gilleard & Higgs, 2010b),
highlighting the need to explore societal understandings of later life and the effect that these
perspectives can have on older adults’ experiences, especially those who are labelled or
‘diagnosed’ as frail. Hence, persons perceived or labelled as frail may be symbolically reduced to
this label, and frailty as a construct of the fourth age may diminish understandings of the
spectrum of diverse aging experiences that can exist (Grenier, Lloyd & Phillipson, 2017).

18
Based on the results of this review, older adults do not in general identify with the
imposed identity of ‘frailty’ and generalizations are described as having harmful implications,
including avoidance of healthcare services which aim to support independence and well-being.
Although older adults can employ coping mechanisms to avoid becoming or being labelled as
frail and participants in the included studies perceived that frailty could be useful for risk
stratification and resource access as related to healthcare, the all-encompassing term was seen as
harmful when, for example, an individual had impaired function in only one of these domains,
but was labelled as frail implying impairment across all domains. As an all-encompassing term,
there is the potential that labelling someone as frail can lead to self-fulfilling negative beliefs
about the self, as well further self-identification with failing health, which could in turn lead to
increased frailty in other domains. In this sense, self-perceived or diagnosed frailty was viewed
as having the potential to cause harm, including stimulating additional decline (Schoenborn et
al., 2018; Puts et al., 2009). Overall, the imposed identity of ‘being frail’ was discordant with
many older adults’ self-views and as a result, people within the included studies resisted self-
identification and the generalizations that accompany the label of frailty. Importantly, denial of
one’s functional status or limitations was perceived as leading to the avoidance of the very
healthcare services which aimed to support an individual with adaptive strategies for
independence and health.
Recommendations
Overall, recommendations based on this review propose that health care professionals
and researchers should: 1) employ a holistic view and understand frailty as a multidimensional
concept; 2) use the terms ‘frail’ and ‘frailty’ with caution and sensitivity, focusing on person-
centered language and finding mutual understanding; and 3) be aware of the potential

19
consequences that frailty language and labelling may have on persons’ well-being and use of
healthcare services.
1) A holistic view of frailty includes valuing domains of psychological, social, and
physical well-being equally. Frailty was perceived as a multidimensional concept, and as such,
cannot be reduced and based only on indicators of physical health. Complex factors indicating
the social determinants of health (e.g., housing, financial status, social support, culture,
education) are linked to frailty, and must therefore be considered part of the comprehensive
assessment and sensitive discussion of frailty with older adults, or factors critical to the
prevention or treatment of frailty will be neglected.
Research has shown that healthcare professionals in general support a holistic view of
frailty (Gustaffson, Edberg & Dahlin-Ivanoff, 2012; Coker, Martin, Simpson & Lafortune,
2019). However, interdisciplinary training and education is required to ensure that perspectives
of frailty (and all diagnoses) extend beyond a biomedical model (Coker et al., 2019). The
perceptions and meaning of frailty amongst researchers have not been explored to the authors’
knowledge, and researchers leading the development and use of frailty measures should aim to
adequately represent all domains of frailty in diagnostic tools. As such, interdisciplinary training
and education relative to the concept of frailty and influencing factors (i.e., social determinants
of health) may be beneficial to health care professionals and researchers.
2) Using frailty language, including the terms ‘frail’ or ‘frailty’ is cautioned, as many
older adults do not use these words to describe themselves, and labelling persons as frail may
contribute to stereotypes or discrimination (Age UK, 2015; Becker, 1994; Grenier, 2007).
Person-centered, ‘person-first’ or ‘ableist’ language such as ‘a person living with frailty’ is
recommended to emphasize personhood and avoid replacing a person with a diagnosis (Puts et

20
al., 2009). Acknowledging and valuing the individual, unique identity of older adults is essential
to providing high-quality care and building trusting relationships (Becker, 1994).
Communicating with older adults about individual, specific health challenges or age-related
changes is preferred, rather than using the term frail as an all-encompassing description of health.
Seeking shared-understanding of frailty and educating older adults to understand frailty as a
dynamic, reversible and avoidable concept by sharing specific examples of ‘living with frailty’
may also promote acceptance of the term (Age UK, 2015; Schoenborn et al., 2018). Overall,
avoiding labelling persons facilitates communication, leads to better care plans and improves
outcomes (Escourrou et al., 2019; Grenier, 2006; Skilbeck et al., 2018).
3. Healthcare professionals and researchers must be aware of the potential consequences
of labelling or diagnosing persons as frail, so as to avoid causing harm and reducing healthcare
service use. Findings from this scoping review illustrated that being diagnosed or self-identifying
as frail may generate a ‘cycle of decline’, result in ‘hiding health problems’, or avoiding
healthcare services, and contribute to further health concerns. Interdisciplinary training and
education surrounding the connection between self-perception and realized health (i.e., mind-
body) may assist health care professionals and researchers to recognize the serious potential for
harm of labelling. In addition, gauging people’s preferences for communication (i.e., the level
and type of information) and language (i.e., what words does the individual use) may assist
health care professionals to avoid offending persons’ identity. Future research may consider
investigating knowledge translation strategies to educate all stakeholders on the meanings,
understandings and implications of frailty, in order to better meet the needs of older adults.

21
In summary, the ongoing critique of frailty, in terms of “its perpetuation of decline
narratives and ultimately its potentially (albeit unintentionally) harmful impact on older people
who are labelled ‘frail’ (Pickard et al., 2019, p. 457), raises the question as to whether new
terminology is required, or whether a more holistic perspective of the changes that can
accompany aging is needed? The World Health Organization’s World Report on Ageing and
Health (2015) uses the term “intrinsic capacity” when discussing the potential for healthy aging,
in terms of individuals’ physical and cognitive health, overall functional ability and the ongoing
influence of the social environment. Such conceptualizations of the aging experience, that are
less disease and limitation-focused and that positively support older adults in their health in ways
that are meaningful to them, are increasingly being called for (Pickard et al, 2019). Importantly,
exploring, engaging, and valuing older adults in the discourse on frailty does not require setting
“aside the progress made in a formal quantitative understanding of frailty in order to engage in a
debate about semantics” (Rockwood & Howlett, 2018, p.3). Grenier (2019), a primary author
included in this review from the field of critical gerontology, has argued that it is crucial to
explore the semantics or meaning attributed to the term frailty and the language associated with
‘being frail’, especially as research is consistently demonstrating that older people do not ascribe
to a frailty lens, or see themselves as frail.
Limitations
The authors restricted inclusion criteria to include only English language articles,
therefore additional unpublished articles, or findings from non-English languages may suggest
alternative perceptions of frailty. In addition, when translated to other languages, the word ‘frail’
may not have a direct translation or may hold different cultural associations making it difficult to
synthesize findings. Within some databases (i.e. CINAHL) use of the keyword ‘frail’ limited

22
search results, however concurrent searches in other databases and hand-searches support the
comprehensiveness of the search. The protocol and findings from this review were not registered
in a review database due to the iterative nature and timeline of this project, but the authors are
confident that the methods have been reported transparently and were guided by PRISMA
reporting guidelines (Moher et al., 2009).
Strengths
The authors of this scoping review are individuals from rehabilitation sciences,
nursing, ethics, and kinesiology disciplines. Diversity as an interdisciplinary team and the mix of
both research skills and clinical work with older adults added a variety of perspectives to this
review. The authors screened titles, abstracts and full texts in duplicate, adding rigour to our
study selection process. Extracting and the coding of data were also performed in duplicate to
enhance reliability, and three articles were analyzed by all authors to enhance trustworthiness
and to avoid researcher bias.
Conclusion
Overall, critical work has been done in operationalizing and quantifying frailty
(Rockwood & Howlett, 2018), particularly in terms of the tools and measurements that have
been developed. Frailty certainly exists and is often experienced by people as they age, therefore
use of the term cannot be dismissed altogether, especially in healthcare practice and research
(Pickard et al., 2019). However, ongoing examination of the term frailty, and guidelines for
person-centered language are necessary. The recommendations summarized can inform next
steps for frailty research and the formulation of guidelines for healthcare professionals,
policymakers, and interdisciplinary researchers, around the use of frailty language. These

23
recommendations may ultimately help stakeholders to avoid inadvertent stigmatization and
promote the inclusion of older adults in conversations about frailty.

24
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31
Figure 1. Search flow.
Note from: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred reporting Iiems
for systematic reviews and Meta-analyses: The PRISMA statement. PLoS Med 6(7): e1000097.
doi:10.1371/journal.pmed1000097
Records identified through
database searching
(n = 8528)
Screening
Included
Eligibility
Identification
Additional records identified
through other sources
(n = 8)
Records after duplicates removed
(n = 4639)
Records screened
(n = 4639)
Records excluded
(n = 4566)
Full-text articles assessed
for eligibility
(n = 73)
Full-text articles excluded,
with reasons (N = 63)
• Study type (n=7)
• Population (n=13)
• Study Focus
(n=43)
Articles included
(n = 10)
Primary studies included
in qualitative synthesis
(n =8)

Table 1. Included studies
Study
Author,
Year
Country
Journal
Design and
Methods
Setting
Sample
Size
Sample Descriptives
Study Aim
Age UK,
2015
United
Kingdom
BritainThinks
Report;
on behalf of
Age UK and
the British
Geriatrics
Society
Qualitative;
Interviews and
focus groups
Southampton,
Manchester and
surrounding
areas
Community-
dwellings
N=39
*Age & gender not reported
With frailty: (n=12),
Non-frail: (n=6),
Family carers: (n=5),
Hospital managers: (n=4),
Nurses: (n=6),
Non-specialist health care
professionals: (n=6)
Identify ways of supporting
older people to: identify with
the concept of frailty,
engage with preventative
strategies and access services
for frailty
Becker,
1994
United
States
Journal of
Aging Studies
Qualitative;
Interviews
San Francisco
Community-
dwellings,
Long-term care
N=28
Over 80 years;
With frailty: (n=19)
Pre-frail: (n=4)
57% Female
Explore the meaning of
autonomy and decreases in
functional ability to older
adults
Escourrou,
2019;
Escourrou,
2017
France
Family
Practice;
The Journal of
Frailty &
Aging
Grounded
Theory;
Interviews and
observations
Toulouse
Community-
dwellings,
Hospital day
program
N=30
Over 65 years,
Pre-frail:
(n=15)
Over 75 years,
With frailty &
risk of losing independence:
(n=15)
60% Female
Explore the perceptions of
older adults of the term and
concept of frailty;
Explore perceived risk of
losing of independence

33
Grenier,
2006;
Grenier,
2007
Canada
Journal of
Social Work
Practice;
Ageing &
Society
Narrative;
Interviews
Montreal
Community-
dwellings
N=12
*Age not reported
Older, diverse, English-
speaking women
100% Female
Explore the distinctions
between 'being and 'feeling'
frail, the emotional feelings
that accompany aging and
what is defined as ‘frailty’;
Explore older women’s
understanding and use of the
word frail.
Puts, 2009
Netherlands
Journal of
Aging Studies
Grounded
Theory;
Interviews
Amsterdam
Community-
dwellings
N=25
67-90 years,
With frailty: (n=11)
Non-frail: (n=14)
44% Female
Explore the meaning that
older adults attach to frailty;
Compare perceptions of
frailty amongst men and
women who are frail and not-
frail of frailty
Schoenborn,
2018
United
States
BMC
Geriatrics
Mixed Methods;
Questionnaire
and Interviews
Baltimore
Community-
dwellings
N=29
Mean age 76,
With frailty: (n=12)
Pre-frail: (n=8)
Non-frail: (n=9)
72% Female
Explore perceptions and
informational needs about
frailty among older adults
Skilbeck,
2018
United
Kingdom
International
Journal of
Older People
Nursing
Ethnography;
Interviews and
observations
North England
Community-
dwellings
N=10
Over 75 years,
With frailty,
Living alone
70% Female
Explore how older people
with complex health
problems experience and
understand frailty in their
daily lives
Warmoth,
2016
United
Kingdom
Ageing &
Society
Grounded
Theory;
Interviews
Southwest
England
Community-
dwellings and
Long-term care
N=29
Over 66 years,
59% Female
Explore older peoples’
perceptions and
understandings of frailty;
Explore if frailty is
considered an inevitable
consequence of ageing or can
be actively managed or
resisted

34