Becoming frail: a major turning point in patients’ life course

Becoming frail: a major turning point in patients’ life course Abstract Background The frailty concept requires that practices should be adapted to meet the challenge of dependence. The GP is in the front line of management of frail elderly patients. Objectives To explore the perception of elderly persons of the term and concept of frailty and to understand their perception of the risk of loss of independence. Methods Two qualitative studies by individual interviews in the homes of elderly persons identified as potentially frail by their GP, or diagnosed as frail and at risk of loss of independence. The sampling was theoretical. The analysis was carried out using an inductive approach following the phases of thematic analysis. The researchers used triangulation and collection was concluded when theoretical saturation had been reached. Results The concept of frailty was seen as forming an integral part of physiological ageing and appeared to be irreversible. The term of frailty had a negative connotation. The physical, cognitive and psychological components of frailty were present in the participants’ discourse. Nutritional and sensory components were less present. Frailty due to inappropriate medication was not cited. Seven risk factors for loss of independence were identified: social isolation, poor physical health, poor mental health, loss of mobility, unsuitable living conditions, unsuitable environment, and low resources. Conclusions Becoming frail is a major turning point in patients’ life course. Coordinated multiprofessional management that takes account of patients’ perceptions could help in negotiating a feasible care plan adapted to the patient’s needs. Frail elderly, general practice, geriatric assessment, personal independence, primary health care, qualitative research Introduction The concept of frailty was first proposed by Fried et al. in 2001 and then completed by Rockwood in 2005 (1,2). Frailty is ‘a state of vulnerability to poor resolution of homoeostasis after a stressor event and is a consequence of cumulative decline in many physiological systems during a lifetime’ (3). In western countries, the prevalence of frailty syndrome is 10.7% in community-dwelling adults aged 65 and older (4). Without interventions, the progression of frailty leads to an increased risk of adverse health-related outcomes: falls, disability, hospitalizations and mortality (5–7). Application of this concept aims at preventing or at least postponing dependence. The ageing of the population and the cost of management of dependence make such an approach even more important (8). The GP is in the front line of management of these frail patients (9–11). Care is based on good practice recommendations proposed by national institutions, such as the British Geriatrics Society and the French Haute Autorité de Santé (12,13). The point of view of the target population needs to be taken into account to understand their perceptions and to adapt our care to their needs. We found no previous publication dealing with this aspect of care. Our research question was ‘What does it mean to be frail and thus at risk of loss of independence?’ To reply to this question, we interviewed frail elderly persons at two key points in their life course, in two distinct studies: (i) after they had been identified as potentially frail by their GP and before geriatric assessment and (ii) after geriatric assessment in those persons identified as being at risk of loss of autonomy. This article presents a summary of these two distinct studies. Analysis of their combined findings provided a complete and global answer to the research question. The principal objective was to explore the perception of elderly participants of the term and the concept of frailty (first study). The secondary objective was to understand their perception of the risk of loss of independence (second study). Methods The two studies were qualitative studies carried out through semi-structured interviews with elderly persons. Both studies were validated by the ethics committee of the University Department of General Practice of Toulouse under the numbers 2014-008 and 2014-0012. First study: interviews with elderly persons identified as potentially frail Population The target population was elderly persons who were followed in primary care and identified as potentially frail by their GP. Inclusion criteria Persons aged over 65 years, living at home, identified as frail by their GP using the Gérontopôle Frailty Screening Tool (14), who were seen for evaluation of frailty and prevention of dependence at the day hospital of Toulouse University Hospital, southwestern France, were eligible for inclusion. Exclusion criteria Persons who had already undergone geriatric assessment, who were hospitalized or living in an institution, who were referred by a physician other than their GP, were identified as frail by an oncogeriatrician or were already included in another research protocol were excluded. Recruitment Based on the planned hospital admissions of the day hospital, theoretical sampling was carried out (15). Preselected participants were listed according to their characteristics to obtain a sample as varied as possible. After each interview, a new participant was selected to obtain a different profile. The participants were contacted by telephone by one of the study’s GP researchers (MH or SG). Recruitment was carried out over 8 months. Participants were informed that they were being contacted for possible inclusion in a study of ageing and its representations in elderly persons. A personal interview in their own home with a researcher was proposed. Data collection Data were collected in semi-directive one-to-one interviews in the participant’s home carried out by one of the study’s GP researchers (MH or SG). A third person (family member) was present at some interviews. The interviews were based on an evolving interview guide developed by three research physicians (MH, SG and BC) with the help of a researcher blinded to the study. It was composed of two parts: (i) situation of the participant (age, life situation, living environment, health problems, etc.) and (ii) the themes of ageing and frailty. The interviews were recorded after the participant’s written consent had been obtained, then retranscribed and anonymized by the two researchers (MH and SG). The interviews were continued until theoretical saturation was achieved. Data analysis Thematic analysis was carried out on paper by three researchers (MH, SG and BC). Firstly, the participants’ discourse was coded; each idea was given an open code. The open codes were then grouped into categories according to their meaningfulness. The categories were then grouped in major general thematic categories to respond to the objective. After categorization, to-ing and fro-ing between the empirical and theoretical data was carried out to construct the themes. Analysis started after the third interview and continued after the end of data collection. The researchers employed triangulation throughout the analysis. Triangulation was used to illuminate blind spots in an interpretive analysis. Second study: interviews with frail elderly persons at risk of loss of independence Population The study population was composed of elderly persons followed in primary care and identified as being at risk of loss of independence. Persons included were aged over 75, living at home and identified as being at risk of loss of independence by health professionals or social workers for medical and/or social reasons. They were identified using the questionnaire developed by the French health authority (Haute Autorité de Santé) for aid in decision making for establishing a personal care plan in patients aged over 75 years (16). Persons who were dependent for the activities of daily living or who had cognitive disorders were excluded. Recruitment Three recruitment sources were used: GPs, medical and social action coordination centres, and hospitals in a department of southwestern France. The diversification of recruitment sources was designed to obtain as varied a sample as possible. Participants were recruited according to the technique of theoretical sampling (15). After each interview, a new participant was selected to obtain a different profile. When the recruiter had obtained the participant’s consent, the researcher (EE) carrying out the interviews contacted the participant by telephone. The researcher introduced himself as carrying out a study on the living conditions of elderly persons. The interviews were all carried out in the homes of the elderly persons by the same researcher (EE), a GP. Recruitment was carried out over 6 months. Data collection Data were collected in semi-directive one-to-one interviews and direct open observations carried out by a research physician (EE). Observation of the participant’s home and environment was carried out before, during and after the interview. The observation was non-participant, indirect, undisguised and unstructured. All participants signed a written consent form before audio recording was begun and the transcriptions were then anonymized (EE). An evolving interview guide in two parts was used: (i) situation of the participant (age, life situation, living environment, illnesses) and (ii) independence and loss of independence, situations that could threaten their independence (real or imaginary). Data collection was concluded when theoretical saturation was achieved. Data analysis The empirical data (retranscriptions, audio recordings, logbooks of observational data) were analysed using an inductive approach following the different phases of grounded theory (14). The coding stages of verbatim transcriptions into open coding and the creation of conceptual categories were carried out using NVivo® software. This stage started after the third interview. Conceptual categories were developed and then an emergent principal theme and secondary themes were identified manually on paper. To-ing and fro-ing between the empirical and theoretical data was carried out to construct the conceptual categories. Attempts at theorization based on the results and comments noted in the logbook were carried out by diagrams using Microsoft Word®. Throughout these stages, triangulation was used by two other research physicians. Triangulation was used to illuminate blind spots in an interpretive analysis. Results Sample Both studies were carried out between 15 January 2013 and 30 June 2015. Thirty interviews took place, 15 for each study, so that saturation of theoretical data was achieved. The interviews lasted a mean of 30 minutes for the first study and 1 h 15 minutes for the second. Six of the persons contacted declined to take part in the study. The reasons given were lack of interest in the work and lack of time. The participants interviewed were aged 65–90 years. Mean age was 78 years for the first study and 82 years for the second. The characteristics of the study population are summarized in Table 1. Table 1. Characteristics of participants interviewed in the two studies (2014–2015): elderly persons identified as potentially fragile (S1 to S15) and frail elderly persons at risk of loss of independence (S16 to S30) Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – RN, registered nurse; R, rheumatologist; C, cardiologist; P, pneumologist; N, neurologist; G, geriatrician; x, yes; -, none. aEducational level: 1, primary school and secondary school; 2, high school and/or professional diploma; 3, higher education. bTwo specific characteristics of the second half of the sample which met the secondary objective. cDuring the last 12 months. View Large Table 1. Characteristics of participants interviewed in the two studies (2014–2015): elderly persons identified as potentially fragile (S1 to S15) and frail elderly persons at risk of loss of independence (S16 to S30) Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – RN, registered nurse; R, rheumatologist; C, cardiologist; P, pneumologist; N, neurologist; G, geriatrician; x, yes; -, none. aEducational level: 1, primary school and secondary school; 2, high school and/or professional diploma; 3, higher education. bTwo specific characteristics of the second half of the sample which met the secondary objective. cDuring the last 12 months. View Large We present below (i) the results of the first study, responding to the principal objective; (ii) results of the second study, responding to the secondary objective; and (iii) a summing-up of the global results of the two studies. Results of the first study: representation of frailty The concept of frailty: inherent to ageing Analysis of the participant’s discourse on frailty revealed an overall lack of knowledge of the definition and concept of frailty. Frailty was not perceived as a state in itself distinguished from physiological ageing. Being frail seemed rather to be a state of vulnerability that was inevitable and inherent to ageing. Mrs P: ‘Well, you know, the years add up, of course that makes you frail. I mean, that’s the way things are’. Being labelled ‘frail’ Being labelled ‘frail’ or a ‘frail person’ had a negative connotation for the participants interviewed. It was seen as a label stuck on by health professionals, and it could change the participant’s own perception of their bodies and their functional capacities. Mrs G: ‘Anyway, it’s a funny word, frail or fragile, it makes you think that all of a sudden, when you get old, you get like glass or crockery that’s going to break’ (laughter). The components of frailty Physical frailty, cognitive frailty and psychological frailty seemed to predominate in explaining the state of frailty. Physical frailty was essentially represented by difficulties in walking and fear of falls, finally leading to use of mobility aids. Mrs Z: ‘Walking sticks, and what’s it called, a… a… a walking frame. If I got to that state, I don’t know what I’d do. I think that then, you really feel you’re going downhill’; Mrs R: ‘Then there’s physical frailty too. You’re stiffer, slower’. Forgetfulness and difficulty in concentrating summed up frailty of memory that could decrease the participant’s abilities and eventually lead to a state of dementia. Psychological frailty was associated with negative life events, generally family related such as grief and separation. In this sense, it appeared to be linked with social frailty as a consequence of social and societal isolation. Nutritional and sensory frailty seemed of secondary importance in explaining vulnerability. Loss of weight was seen as an alarm signal by the participants. It could be secondary to negative life events, as an extension of psychological frailty. Sensory frailty was essentially represented by failing eyesight. The participants associated failing eyesight with ageing and considered that it led to loss of independence and to isolation. Frailty due to inappropriate medication was not mentioned by the participants. Results of the second study: perception of risk of loss of independence Seven risk factors for loss of independence were identified after combined and simultaneous analysis of data issued from interviews and observations. Mental health Mental health appeared to be of decisive importance in maintaining independence. (‘Mental health is defined as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community’ World Health Organization, December 2013.) Social isolation and poor physical health were two major factors affecting mental health. The concept of willpower was regularly linked with mental health. Willpower gave the participants the drive needed to carry out the tasks of daily living. Willpower was related to the idea of the struggle to carry on their daily life as usual. It seemed difficult to maintain habits and activities in a world which was changing with or without them, and with which they could not always identify. Mrs A: Sometimes I don’t feel like walking but I force myself to walk. As long as I’ve got a little willpower that helps me carry on… Physical health Progressive decline in abilities over time was perceived as inevitable. Chronic illness seemed to be experienced as an irremediable and progressive internal violation which made the participant anxious and uncertain with regard to the future. Mrs B, who has rheumatoid arthritis: ‘It was chronic AND progressive: well, it’s certainly progressing!’ Change in abilities resulted in changes in the participant’s personal resources and in the constraints of their environment. Social isolation Mrs L: ‘I came to live here with my husband when we retired, then my husband died and I’ve stayed alone — here’. Geographical isolation (living in an isolated house without neighbours) and widowhood both led to social isolation. The impossibility of moving around and going out, whether for financial or physical reasons, deprived the participant of contact with the social world outside. This isolation gave rise to fear about situations where it would be necessary to call for help, for example in the event of a fall. Confrontation with all ‘life’s worries’ that could not be shared led to exhaustion and anxiety when faced with the need to deal with difficulties and manage everything on one’s own. Loss of mobility: no more going out Within a mobile society, loss of mobility was disabling and difficult to accept. Loss of mobility was symbolized by having to give up driving, a decisive turning point in the process of loss of independence. Driving cessation was all the more difficult when driving was considered to be out of the question by active persons in society (physician, child) who authorized themselves to make the decision on behalf of and instead of the participant. This decision redefined the child/parent roles. Mrs L: ‘I’ve given up the car and that’s got me down. It’s got me down because I was very independent, I did my own shopping, I went to the market every Monday and things like that… and now I depend on someone else’. Unsuitable environment Lack of nearby shops made it impossible to carry out ‘vital’ daily tasks. The lack of public transport in the town or links with neighbouring towns deprived the participant of an independence of which they were physically capable. Mrs D, living alone at home, spoke of the bus that used to run between nearby towns and that had been discontinued by the council: ‘Yes, and to go and see the doctor, the specialist in (town)… I took the bus to go and see them. I went everywhere on the bus!’ Lack of neighbours deprived the elderly of human assistance and could increase social isolation. On another level, the lack of children, other family members, or relatives and friends nearby could have the same consequences. The availability of health care services in the neighbourhood was an important issue for the elderly persons. Unsuitable living conditions The elderly person’s home could become unsuitable over the years. A first floor, stairs, a ‘dangerous’ bathroom, or a garden to be kept up put the participant in a situation which could lead to a loss of independence. The difficulty in living in their own home, with its long history and many memories, led to regression and negatively affected the participant’s emotional health. Mr and Mrs B did not use their bedroom and the other upstairs rooms as they could no longer climb the stairs. Mr B: ‘We’ve got everything we need on the ground floor, except health!’ Low resources Low financial resources, a ‘small pension’, led to anxiety and left the older person with a narrow margin with which to manage their day-to-day needs. The question of the availability of assistance from other persons in the participant’s environment was also a major preoccupation. Global results: becoming frail—a major turning point in the life course Considering the results of the two studies, it seemed that frailty syndrome for an elderly person may be accompanied by an identity crisis. The findings indicate that frail elderly status is related to both physical difficulties (loss of mobility or difficulty in keeping up daily activities in the house) and psychological difficulties (negative connotation of the term ‘frailty’ when it was used, social isolation, moral distress). Discussion The concept of frailty was not familiar to the persons interviewed. It was part of physiological ageing and was perceived as irreversible. The term of frailty used by health professionals carried a negative connotation. The physical, cognitive and psychological components of frailty were cited by the patients. The nutritional and sensory components were less present. Frailty due to inappropriate medication was not cited. The frailty syndrome increases the risk of becoming dependent (17). Seven risk factors for loss of independence were identified: social isolation, poor physical health, poor mental health, loss of mobility, unsuitable living conditions, unsuitable environment and low resources. Reversibility of frail syndrome Frailty was not a notion that was familiar to our population and was confused with ageing. Participants seemed to identify frail syndrome as an irreversible state. In spite of the absence of an international consensus on the definition of frailty (18), the scientific community agrees on the reversible nature of the status of frailty (2,10,12,13). This reversibility is the reason motivating management, making it possible to postpone or prevent the onset of dependence (19). Becoming frail: a major turning point in the life course A societal change and a change of identity As advancing age is associated with vulnerability (20), disclosure of frailty adds further weight to the feeling of vulnerability. The term ‘frailty’ was felt to be pejorative by the patients we studied. There is a link between frailty and low self-esteem (21). The term ‘frailty’ or fragility was considered to be applicable to objects and not to define a state of health, for the participants both of our study and in the literature (22). The elderly person who has just been diagnosed as frail may feel that they are losing control, and this decreases their ability to adjust (21,22). By including the children in decision making regarding the management of the elderly person, the health professional reverses the status of parental authority. Control of life space was a source of security for frail participants in our study as well as in the literature (23,24). The degree of mobility, by influencing perceived independence, also played a fundamental role (24,25). Frailty is associated with a low level of wellbeing (26), in particular through change in psychological and emotional components (21). The frail elderly person feels that there is no ‘light at the end of the tunnel’ (27). Our findings support the concept of the frailty identity crisis described in particular by Andrew et al. (26) and Fillit and Butler (27). This psychological vulnerability (27) is independent of physical components. Conversely, emotional wellbeing has a protective effect against physical decline in the elderly (28). The frailty identity crisis, physical decline and the change in status within society are responsible for a major turning point in the life course. The place of the GP As pointed out by Callaghan and Smith (11), the GP has an important place in the management of frail patients. This is a considerable challenge in view of the large number of potential patients and the complexity of management. In addition, there are the medical, societal and financial impacts of inappropriate management. Faced with this challenge, the British Geriatrics Society has proposed the gold standard for the management of frailty in older people. This is the process of care known as comprehensive geriatric assessment (CGA) (29). This approach has demonstrated its efficacy and should thus be prioritized in primary care (30). As yet, global management approaches to frail patients have not demonstrated a significant improvement in patients’ health or health care utilization (31). The only types of management that have shown some efficacy were the prescription of physical exercise and reduction of inappropriate medication (19). In our study, physical frailty was the component best perceived by the patients, and this could be of help in negotiating the support plan. The risk due to inappropriate medication, which was not identified by the participants in our study, could require a further effort at communication by the GP. This could transform passive acceptance of the status of frail patient into an active and adaptive response (27). Limitations A caregiver was present at some interviews. Caregivers were asked to allow the participants to express themselves freely. Their presence could however have influenced the participant’s discourse. Four participants in the sample (two couples) were interviewed individually, but in the presence of their spouse. This arrangement yielded complementary information on living conditions but may have restricted what was said by each partner. Perspectives GPs, by better understanding the physical and psychological changes in their frail elderly patients, could communicate more appropriately. This could lead to improvements in management of their patients at this major turning point in their life course. This hypothesis remains to be tested in our patients. Conclusion Management of frail patients has become a priority in primary care. For an elderly person, the onset of frailty appears to be a major turning point in their life course. Psychological and societal components cumulate with the physical component. The feelings and perception of frail elderly subjects concord with the content of the CGA. As general physicians, taking account of this major turning point in life would be of help in negotiating a care plan that is adapted to the individual person and that includes achievable aims. Declaration Funding: None. Ethical approval: The ethics committee of the University Department of General Practice of Toulouse approved both studies under the numbers 2014-008 and 2014-0012. Conflict of interest: None. Acknowledgement The authors thank all those who agreed to take part in the interviews. References 1. Fried LP , Tangen CM , Walston J , et al. ; Cardiovascular Health Study Collaborative Research Group . Frailty in older adults: evidence for a phenotype . J Gerontol A Biol Sci Med Sci 2001 ; 56 : M146 – 56 . Google Scholar CrossRef Search ADS PubMed 2. Rockwood K . What would make a definition of frailty successful ? Age Ageing 2005 ; 34 : 432 – 4 . Google Scholar CrossRef Search ADS PubMed 3. Clegg A , Young J , Iliffe S , Rikkert MO , Rockwood K . Frailty in elderly people . 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How older persons perceive the loss of independence: the need of a holistic approach to frailty . J Frailty Aging 2017 ; 6 : 107 – 12 . Google Scholar PubMed 26. Andrew MK , Fisk JD , Rockwood K . Psychological well-being in relation to frailty: a frailty identity crisis ? Int Psychogeriatr 2012 ; 24 : 1347 – 53 . Google Scholar CrossRef Search ADS PubMed 27. Fillit H , Butler RN . The frailty identity crisis . J Am Geriatr Soc 2009 ; 57 : 348 – 52 . Google Scholar CrossRef Search ADS PubMed 28. Ostir GV , Markides KS , Black SA , Goodwin JS . Emotional well-being predicts subsequent functional independence and survival . J Am Geriatr Soc 2000 ; 48 : 473 – 8 . Google Scholar CrossRef Search ADS PubMed 29. Welsh TJ , Gordon AL , Gladman JR . Comprehensive geriatric assessment—a guide for the non-specialist . Int J Clin Pract 2014 ; 68 : 290 – 3 . Google Scholar CrossRef Search ADS PubMed 30. Monteserin R , Brotons C , Moral I , et al. Effectiveness of a geriatric intervention in primary care: a randomized clinical trial . Fam Pract 2010 ; 27 : 239 – 45 . Google Scholar CrossRef Search ADS PubMed 31. Hopman P , de Bruin SR , Forjaz MJ , et al. Effectiveness of comprehensive care programs for patients with multiple chronic conditions or frailty: a systematic literature review . Health Policy 2016 ; 120 : 818 – 32 . Google Scholar CrossRef Search ADS PubMed © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Family Practice Oxford University Press

Becoming frail: a major turning point in patients’ life course

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Oxford University Press
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Abstract

Abstract Background The frailty concept requires that practices should be adapted to meet the challenge of dependence. The GP is in the front line of management of frail elderly patients. Objectives To explore the perception of elderly persons of the term and concept of frailty and to understand their perception of the risk of loss of independence. Methods Two qualitative studies by individual interviews in the homes of elderly persons identified as potentially frail by their GP, or diagnosed as frail and at risk of loss of independence. The sampling was theoretical. The analysis was carried out using an inductive approach following the phases of thematic analysis. The researchers used triangulation and collection was concluded when theoretical saturation had been reached. Results The concept of frailty was seen as forming an integral part of physiological ageing and appeared to be irreversible. The term of frailty had a negative connotation. The physical, cognitive and psychological components of frailty were present in the participants’ discourse. Nutritional and sensory components were less present. Frailty due to inappropriate medication was not cited. Seven risk factors for loss of independence were identified: social isolation, poor physical health, poor mental health, loss of mobility, unsuitable living conditions, unsuitable environment, and low resources. Conclusions Becoming frail is a major turning point in patients’ life course. Coordinated multiprofessional management that takes account of patients’ perceptions could help in negotiating a feasible care plan adapted to the patient’s needs. Frail elderly, general practice, geriatric assessment, personal independence, primary health care, qualitative research Introduction The concept of frailty was first proposed by Fried et al. in 2001 and then completed by Rockwood in 2005 (1,2). Frailty is ‘a state of vulnerability to poor resolution of homoeostasis after a stressor event and is a consequence of cumulative decline in many physiological systems during a lifetime’ (3). In western countries, the prevalence of frailty syndrome is 10.7% in community-dwelling adults aged 65 and older (4). Without interventions, the progression of frailty leads to an increased risk of adverse health-related outcomes: falls, disability, hospitalizations and mortality (5–7). Application of this concept aims at preventing or at least postponing dependence. The ageing of the population and the cost of management of dependence make such an approach even more important (8). The GP is in the front line of management of these frail patients (9–11). Care is based on good practice recommendations proposed by national institutions, such as the British Geriatrics Society and the French Haute Autorité de Santé (12,13). The point of view of the target population needs to be taken into account to understand their perceptions and to adapt our care to their needs. We found no previous publication dealing with this aspect of care. Our research question was ‘What does it mean to be frail and thus at risk of loss of independence?’ To reply to this question, we interviewed frail elderly persons at two key points in their life course, in two distinct studies: (i) after they had been identified as potentially frail by their GP and before geriatric assessment and (ii) after geriatric assessment in those persons identified as being at risk of loss of autonomy. This article presents a summary of these two distinct studies. Analysis of their combined findings provided a complete and global answer to the research question. The principal objective was to explore the perception of elderly participants of the term and the concept of frailty (first study). The secondary objective was to understand their perception of the risk of loss of independence (second study). Methods The two studies were qualitative studies carried out through semi-structured interviews with elderly persons. Both studies were validated by the ethics committee of the University Department of General Practice of Toulouse under the numbers 2014-008 and 2014-0012. First study: interviews with elderly persons identified as potentially frail Population The target population was elderly persons who were followed in primary care and identified as potentially frail by their GP. Inclusion criteria Persons aged over 65 years, living at home, identified as frail by their GP using the Gérontopôle Frailty Screening Tool (14), who were seen for evaluation of frailty and prevention of dependence at the day hospital of Toulouse University Hospital, southwestern France, were eligible for inclusion. Exclusion criteria Persons who had already undergone geriatric assessment, who were hospitalized or living in an institution, who were referred by a physician other than their GP, were identified as frail by an oncogeriatrician or were already included in another research protocol were excluded. Recruitment Based on the planned hospital admissions of the day hospital, theoretical sampling was carried out (15). Preselected participants were listed according to their characteristics to obtain a sample as varied as possible. After each interview, a new participant was selected to obtain a different profile. The participants were contacted by telephone by one of the study’s GP researchers (MH or SG). Recruitment was carried out over 8 months. Participants were informed that they were being contacted for possible inclusion in a study of ageing and its representations in elderly persons. A personal interview in their own home with a researcher was proposed. Data collection Data were collected in semi-directive one-to-one interviews in the participant’s home carried out by one of the study’s GP researchers (MH or SG). A third person (family member) was present at some interviews. The interviews were based on an evolving interview guide developed by three research physicians (MH, SG and BC) with the help of a researcher blinded to the study. It was composed of two parts: (i) situation of the participant (age, life situation, living environment, health problems, etc.) and (ii) the themes of ageing and frailty. The interviews were recorded after the participant’s written consent had been obtained, then retranscribed and anonymized by the two researchers (MH and SG). The interviews were continued until theoretical saturation was achieved. Data analysis Thematic analysis was carried out on paper by three researchers (MH, SG and BC). Firstly, the participants’ discourse was coded; each idea was given an open code. The open codes were then grouped into categories according to their meaningfulness. The categories were then grouped in major general thematic categories to respond to the objective. After categorization, to-ing and fro-ing between the empirical and theoretical data was carried out to construct the themes. Analysis started after the third interview and continued after the end of data collection. The researchers employed triangulation throughout the analysis. Triangulation was used to illuminate blind spots in an interpretive analysis. Second study: interviews with frail elderly persons at risk of loss of independence Population The study population was composed of elderly persons followed in primary care and identified as being at risk of loss of independence. Persons included were aged over 75, living at home and identified as being at risk of loss of independence by health professionals or social workers for medical and/or social reasons. They were identified using the questionnaire developed by the French health authority (Haute Autorité de Santé) for aid in decision making for establishing a personal care plan in patients aged over 75 years (16). Persons who were dependent for the activities of daily living or who had cognitive disorders were excluded. Recruitment Three recruitment sources were used: GPs, medical and social action coordination centres, and hospitals in a department of southwestern France. The diversification of recruitment sources was designed to obtain as varied a sample as possible. Participants were recruited according to the technique of theoretical sampling (15). After each interview, a new participant was selected to obtain a different profile. When the recruiter had obtained the participant’s consent, the researcher (EE) carrying out the interviews contacted the participant by telephone. The researcher introduced himself as carrying out a study on the living conditions of elderly persons. The interviews were all carried out in the homes of the elderly persons by the same researcher (EE), a GP. Recruitment was carried out over 6 months. Data collection Data were collected in semi-directive one-to-one interviews and direct open observations carried out by a research physician (EE). Observation of the participant’s home and environment was carried out before, during and after the interview. The observation was non-participant, indirect, undisguised and unstructured. All participants signed a written consent form before audio recording was begun and the transcriptions were then anonymized (EE). An evolving interview guide in two parts was used: (i) situation of the participant (age, life situation, living environment, illnesses) and (ii) independence and loss of independence, situations that could threaten their independence (real or imaginary). Data collection was concluded when theoretical saturation was achieved. Data analysis The empirical data (retranscriptions, audio recordings, logbooks of observational data) were analysed using an inductive approach following the different phases of grounded theory (14). The coding stages of verbatim transcriptions into open coding and the creation of conceptual categories were carried out using NVivo® software. This stage started after the third interview. Conceptual categories were developed and then an emergent principal theme and secondary themes were identified manually on paper. To-ing and fro-ing between the empirical and theoretical data was carried out to construct the conceptual categories. Attempts at theorization based on the results and comments noted in the logbook were carried out by diagrams using Microsoft Word®. Throughout these stages, triangulation was used by two other research physicians. Triangulation was used to illuminate blind spots in an interpretive analysis. Results Sample Both studies were carried out between 15 January 2013 and 30 June 2015. Thirty interviews took place, 15 for each study, so that saturation of theoretical data was achieved. The interviews lasted a mean of 30 minutes for the first study and 1 h 15 minutes for the second. Six of the persons contacted declined to take part in the study. The reasons given were lack of interest in the work and lack of time. The participants interviewed were aged 65–90 years. Mean age was 78 years for the first study and 82 years for the second. The characteristics of the study population are summarized in Table 1. Table 1. Characteristics of participants interviewed in the two studies (2014–2015): elderly persons identified as potentially fragile (S1 to S15) and frail elderly persons at risk of loss of independence (S16 to S30) Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – RN, registered nurse; R, rheumatologist; C, cardiologist; P, pneumologist; N, neurologist; G, geriatrician; x, yes; -, none. aEducational level: 1, primary school and secondary school; 2, high school and/or professional diploma; 3, higher education. bTwo specific characteristics of the second half of the sample which met the secondary objective. cDuring the last 12 months. View Large Table 1. Characteristics of participants interviewed in the two studies (2014–2015): elderly persons identified as potentially fragile (S1 to S15) and frail elderly persons at risk of loss of independence (S16 to S30) Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (M/F) Marital status Educational levela Living environment Social environment Domestic help S1 83 F Widow 1 Urban – x S2 70 F Married 2 Urban Spouse, child – S3 75 F Spinster 3 Urban Neighbour – S4 82 F Widow 2 Urban – x S5 68 F Divorced 2 Urban Neighbour – S6 82 M Married 1 Semi-urban Child, spouse – S7 65 F Spinster 3 Urban Sister – S8 79 M Married 1 Urban Spouse, child – S9 78 M Married 3 Urban Spouse, child – S10 86 F Widow 2 Rural Children x S11 90 F Widow 3 Semi-urban Children x S12 80 F Married 3 Semi-urban Spouse, children – S13 83 M Married 3 Semi-urban Spouse, children x S14 83 M Married 1 Rural Spouse, child x S15 66 M Bachelor 2 Semi-urban – x Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – Subject Age (yr) Gender (F/M) Marital status Educational levela Living environment Social environment Domestic help Professionals involved in careb Hospitalizationb,c S16 88 F Widow 3 Urban Neighbours x GP, RN, R – S17 87 M Widower 2 Urban Family x GP, P, RN – S18 84 F Married 1 Semi-urban Family x GP – S19 82 M Married 2 Semi-urban Family x GP, C, RN – S20 84 M Married 2 Rural Family x GP, RN – S21 83 F Married 1 Rural Family x GP, RN – S22 93 F Widow 2 Rural Neighbours – GP – S23 77 M Divorced 1 Rural Neighbours x GP, P – S24 78 F Widow 2 Rural Neighbours – GP, P – S25 82 F Widow 3 Semi-urban – x GP x S26 82 M Widower 3 Rural – – GP, RN x S27 79 F Widow 1 Semi-urban Neighbours, family – GP x S28 83 F Widow 2 Semi-urban Neighbours – GP x S29 79 M Married 2 Rural Family – GP, N, C, G x S30 78 F Married 1 Rural Family – – – RN, registered nurse; R, rheumatologist; C, cardiologist; P, pneumologist; N, neurologist; G, geriatrician; x, yes; -, none. aEducational level: 1, primary school and secondary school; 2, high school and/or professional diploma; 3, higher education. bTwo specific characteristics of the second half of the sample which met the secondary objective. cDuring the last 12 months. View Large We present below (i) the results of the first study, responding to the principal objective; (ii) results of the second study, responding to the secondary objective; and (iii) a summing-up of the global results of the two studies. Results of the first study: representation of frailty The concept of frailty: inherent to ageing Analysis of the participant’s discourse on frailty revealed an overall lack of knowledge of the definition and concept of frailty. Frailty was not perceived as a state in itself distinguished from physiological ageing. Being frail seemed rather to be a state of vulnerability that was inevitable and inherent to ageing. Mrs P: ‘Well, you know, the years add up, of course that makes you frail. I mean, that’s the way things are’. Being labelled ‘frail’ Being labelled ‘frail’ or a ‘frail person’ had a negative connotation for the participants interviewed. It was seen as a label stuck on by health professionals, and it could change the participant’s own perception of their bodies and their functional capacities. Mrs G: ‘Anyway, it’s a funny word, frail or fragile, it makes you think that all of a sudden, when you get old, you get like glass or crockery that’s going to break’ (laughter). The components of frailty Physical frailty, cognitive frailty and psychological frailty seemed to predominate in explaining the state of frailty. Physical frailty was essentially represented by difficulties in walking and fear of falls, finally leading to use of mobility aids. Mrs Z: ‘Walking sticks, and what’s it called, a… a… a walking frame. If I got to that state, I don’t know what I’d do. I think that then, you really feel you’re going downhill’; Mrs R: ‘Then there’s physical frailty too. You’re stiffer, slower’. Forgetfulness and difficulty in concentrating summed up frailty of memory that could decrease the participant’s abilities and eventually lead to a state of dementia. Psychological frailty was associated with negative life events, generally family related such as grief and separation. In this sense, it appeared to be linked with social frailty as a consequence of social and societal isolation. Nutritional and sensory frailty seemed of secondary importance in explaining vulnerability. Loss of weight was seen as an alarm signal by the participants. It could be secondary to negative life events, as an extension of psychological frailty. Sensory frailty was essentially represented by failing eyesight. The participants associated failing eyesight with ageing and considered that it led to loss of independence and to isolation. Frailty due to inappropriate medication was not mentioned by the participants. Results of the second study: perception of risk of loss of independence Seven risk factors for loss of independence were identified after combined and simultaneous analysis of data issued from interviews and observations. Mental health Mental health appeared to be of decisive importance in maintaining independence. (‘Mental health is defined as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community’ World Health Organization, December 2013.) Social isolation and poor physical health were two major factors affecting mental health. The concept of willpower was regularly linked with mental health. Willpower gave the participants the drive needed to carry out the tasks of daily living. Willpower was related to the idea of the struggle to carry on their daily life as usual. It seemed difficult to maintain habits and activities in a world which was changing with or without them, and with which they could not always identify. Mrs A: Sometimes I don’t feel like walking but I force myself to walk. As long as I’ve got a little willpower that helps me carry on… Physical health Progressive decline in abilities over time was perceived as inevitable. Chronic illness seemed to be experienced as an irremediable and progressive internal violation which made the participant anxious and uncertain with regard to the future. Mrs B, who has rheumatoid arthritis: ‘It was chronic AND progressive: well, it’s certainly progressing!’ Change in abilities resulted in changes in the participant’s personal resources and in the constraints of their environment. Social isolation Mrs L: ‘I came to live here with my husband when we retired, then my husband died and I’ve stayed alone — here’. Geographical isolation (living in an isolated house without neighbours) and widowhood both led to social isolation. The impossibility of moving around and going out, whether for financial or physical reasons, deprived the participant of contact with the social world outside. This isolation gave rise to fear about situations where it would be necessary to call for help, for example in the event of a fall. Confrontation with all ‘life’s worries’ that could not be shared led to exhaustion and anxiety when faced with the need to deal with difficulties and manage everything on one’s own. Loss of mobility: no more going out Within a mobile society, loss of mobility was disabling and difficult to accept. Loss of mobility was symbolized by having to give up driving, a decisive turning point in the process of loss of independence. Driving cessation was all the more difficult when driving was considered to be out of the question by active persons in society (physician, child) who authorized themselves to make the decision on behalf of and instead of the participant. This decision redefined the child/parent roles. Mrs L: ‘I’ve given up the car and that’s got me down. It’s got me down because I was very independent, I did my own shopping, I went to the market every Monday and things like that… and now I depend on someone else’. Unsuitable environment Lack of nearby shops made it impossible to carry out ‘vital’ daily tasks. The lack of public transport in the town or links with neighbouring towns deprived the participant of an independence of which they were physically capable. Mrs D, living alone at home, spoke of the bus that used to run between nearby towns and that had been discontinued by the council: ‘Yes, and to go and see the doctor, the specialist in (town)… I took the bus to go and see them. I went everywhere on the bus!’ Lack of neighbours deprived the elderly of human assistance and could increase social isolation. On another level, the lack of children, other family members, or relatives and friends nearby could have the same consequences. The availability of health care services in the neighbourhood was an important issue for the elderly persons. Unsuitable living conditions The elderly person’s home could become unsuitable over the years. A first floor, stairs, a ‘dangerous’ bathroom, or a garden to be kept up put the participant in a situation which could lead to a loss of independence. The difficulty in living in their own home, with its long history and many memories, led to regression and negatively affected the participant’s emotional health. Mr and Mrs B did not use their bedroom and the other upstairs rooms as they could no longer climb the stairs. Mr B: ‘We’ve got everything we need on the ground floor, except health!’ Low resources Low financial resources, a ‘small pension’, led to anxiety and left the older person with a narrow margin with which to manage their day-to-day needs. The question of the availability of assistance from other persons in the participant’s environment was also a major preoccupation. Global results: becoming frail—a major turning point in the life course Considering the results of the two studies, it seemed that frailty syndrome for an elderly person may be accompanied by an identity crisis. The findings indicate that frail elderly status is related to both physical difficulties (loss of mobility or difficulty in keeping up daily activities in the house) and psychological difficulties (negative connotation of the term ‘frailty’ when it was used, social isolation, moral distress). Discussion The concept of frailty was not familiar to the persons interviewed. It was part of physiological ageing and was perceived as irreversible. The term of frailty used by health professionals carried a negative connotation. The physical, cognitive and psychological components of frailty were cited by the patients. The nutritional and sensory components were less present. Frailty due to inappropriate medication was not cited. The frailty syndrome increases the risk of becoming dependent (17). Seven risk factors for loss of independence were identified: social isolation, poor physical health, poor mental health, loss of mobility, unsuitable living conditions, unsuitable environment and low resources. Reversibility of frail syndrome Frailty was not a notion that was familiar to our population and was confused with ageing. Participants seemed to identify frail syndrome as an irreversible state. In spite of the absence of an international consensus on the definition of frailty (18), the scientific community agrees on the reversible nature of the status of frailty (2,10,12,13). This reversibility is the reason motivating management, making it possible to postpone or prevent the onset of dependence (19). Becoming frail: a major turning point in the life course A societal change and a change of identity As advancing age is associated with vulnerability (20), disclosure of frailty adds further weight to the feeling of vulnerability. The term ‘frailty’ was felt to be pejorative by the patients we studied. There is a link between frailty and low self-esteem (21). The term ‘frailty’ or fragility was considered to be applicable to objects and not to define a state of health, for the participants both of our study and in the literature (22). The elderly person who has just been diagnosed as frail may feel that they are losing control, and this decreases their ability to adjust (21,22). By including the children in decision making regarding the management of the elderly person, the health professional reverses the status of parental authority. Control of life space was a source of security for frail participants in our study as well as in the literature (23,24). The degree of mobility, by influencing perceived independence, also played a fundamental role (24,25). Frailty is associated with a low level of wellbeing (26), in particular through change in psychological and emotional components (21). The frail elderly person feels that there is no ‘light at the end of the tunnel’ (27). Our findings support the concept of the frailty identity crisis described in particular by Andrew et al. (26) and Fillit and Butler (27). This psychological vulnerability (27) is independent of physical components. Conversely, emotional wellbeing has a protective effect against physical decline in the elderly (28). The frailty identity crisis, physical decline and the change in status within society are responsible for a major turning point in the life course. The place of the GP As pointed out by Callaghan and Smith (11), the GP has an important place in the management of frail patients. This is a considerable challenge in view of the large number of potential patients and the complexity of management. In addition, there are the medical, societal and financial impacts of inappropriate management. Faced with this challenge, the British Geriatrics Society has proposed the gold standard for the management of frailty in older people. This is the process of care known as comprehensive geriatric assessment (CGA) (29). This approach has demonstrated its efficacy and should thus be prioritized in primary care (30). As yet, global management approaches to frail patients have not demonstrated a significant improvement in patients’ health or health care utilization (31). The only types of management that have shown some efficacy were the prescription of physical exercise and reduction of inappropriate medication (19). In our study, physical frailty was the component best perceived by the patients, and this could be of help in negotiating the support plan. The risk due to inappropriate medication, which was not identified by the participants in our study, could require a further effort at communication by the GP. This could transform passive acceptance of the status of frail patient into an active and adaptive response (27). Limitations A caregiver was present at some interviews. Caregivers were asked to allow the participants to express themselves freely. Their presence could however have influenced the participant’s discourse. Four participants in the sample (two couples) were interviewed individually, but in the presence of their spouse. This arrangement yielded complementary information on living conditions but may have restricted what was said by each partner. Perspectives GPs, by better understanding the physical and psychological changes in their frail elderly patients, could communicate more appropriately. This could lead to improvements in management of their patients at this major turning point in their life course. This hypothesis remains to be tested in our patients. Conclusion Management of frail patients has become a priority in primary care. For an elderly person, the onset of frailty appears to be a major turning point in their life course. Psychological and societal components cumulate with the physical component. The feelings and perception of frail elderly subjects concord with the content of the CGA. As general physicians, taking account of this major turning point in life would be of help in negotiating a care plan that is adapted to the individual person and that includes achievable aims. Declaration Funding: None. Ethical approval: The ethics committee of the University Department of General Practice of Toulouse approved both studies under the numbers 2014-008 and 2014-0012. Conflict of interest: None. Acknowledgement The authors thank all those who agreed to take part in the interviews. References 1. Fried LP , Tangen CM , Walston J , et al. ; Cardiovascular Health Study Collaborative Research Group . Frailty in older adults: evidence for a phenotype . J Gerontol A Biol Sci Med Sci 2001 ; 56 : M146 – 56 . Google Scholar CrossRef Search ADS PubMed 2. Rockwood K . What would make a definition of frailty successful ? Age Ageing 2005 ; 34 : 432 – 4 . Google Scholar CrossRef Search ADS PubMed 3. Clegg A , Young J , Iliffe S , Rikkert MO , Rockwood K . Frailty in elderly people . 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Comment prendre en charge les personnes âgées fragiles en ambulatoire? Paris, France : Haute Autorité de Santé , 2013 . https://www.has-sante.fr/portail/upload/docs/application/pdf/2014-01/fps_prise_en_charge_paf_ambulatoire.pdf (accessed on 13 April 2018 ). 14. Vellas B , Balardy L , Gillette-Guyonnet S , et al. Looking for frailty in community-dwelling older persons: the Gérontopôle Frailty Screening Tool (GFST) . J Nutr Health Aging 2013 ; 17 : 629 – 31 . Google Scholar CrossRef Search ADS PubMed 15. Glaser BG , Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research . London, UK : Aldine Transaction , 1967 . 16. Haute Autorité de Santé . Questionnaire d’aide à la décision d’initier un PPS chez des patients de plus de 75 ans . https://www.has-sante.fr/portail/upload/docs/application/pdf/2014-04/questionnaire_pps_web.pdf (accessed on 18 May 2018). 17. Rockwood K , Howlett SE , MacKnight C , et al. Prevalence, attributes, and outcomes of fitness and frailty in community-dwelling older adults: report from the Canadian study of health and aging . J Gerontol A Biol Sci Med Sci 2004 ; 59 : 1310 – 7 . Google Scholar CrossRef Search ADS PubMed 18. Rodriguez-Manas L , Feart C , Mann G , et al. Searching for an operational definition of frailty: a Delphi method based consensus statement: the frailty operative definition-consensus conference project . J Gerontol A Biol Sci Med Sci 2013 ; 68 : 62 – 7 . Google Scholar CrossRef Search ADS PubMed 19. Morley JE , Vellas B , van Kan GA , et al. Frailty consensus: a call to action . J Am Med Dir Assoc 2013 ; 14 : 392 – 7 . Google Scholar CrossRef Search ADS PubMed 20. Brocklehurst H , Laurenson M . A concept analysis examining the vulnerability of older people . Br J Nurs 2008 ; 17 : 1354 – 7 . Google Scholar CrossRef Search ADS PubMed 21. Guerrero-Escobedo P , Tamez-Rivera O , Amieva H , Avila-Funes JA . 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Effectiveness of a geriatric intervention in primary care: a randomized clinical trial . Fam Pract 2010 ; 27 : 239 – 45 . Google Scholar CrossRef Search ADS PubMed 31. Hopman P , de Bruin SR , Forjaz MJ , et al. Effectiveness of comprehensive care programs for patients with multiple chronic conditions or frailty: a systematic literature review . Health Policy 2016 ; 120 : 818 – 32 . Google Scholar CrossRef Search ADS PubMed © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

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Family PracticeOxford University Press

Published: May 24, 2018

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