Frail patients admitted to the Intensive Care Unit (ICU) have a poorer outcome that may be related to Post ICU Syndrome, readmissions or death within a year of discharge. Assessing frailty can help guide decision-making and care planning.
ObjectiveTo explore the perception of patients in relation to the assessment of frailty in the ICU.
MethodologyQualitative phenomenological study through semi-structured interviews in the ICU of a public hospital of intermediate complexity. Thirteen patients with experience of admission to the ICU participated. A thematic analysis of the discourse was carried out following Braun and Clarke's proposal.
ResultsThree themes and seven subthemes were identified as pivotal in describing the patients' experience: perception of own frailty, coping styles and resources for dealing with frailty, and the value of monitoring the evolution of frailty. Participants understand frailty as opposed to strength, from a multidimensional perspective and linked to the idea of loss of capabilities. They try to deal with fragility by coping and struggling with it, drawing on intrapersonal and interpersonal resources. They place value on monitoring the evolution of frailty insofar as they feel considered and supported.
ConclusionsThe patients' narratives evidence the important repercussion that an ICU admission has on the physical and psycho-socio-emotional dimensions of patients and caregivers. The assessment of frailty and the monitoring of its evolution at discharge is valued as important to be able to adapt care and significant as a facilitator of emotional support. There is a clear need for support at discharge in the different spheres and for accompanying the patient throughout their recovery to enable an early return to their life prior to admission.
Los pacientes frágiles que ingresan en Unidad de Cuidados Intensivos (UCI) tienen una evolución más desfavorable que podría relacionarse con el Síndrome Post UCI, reingresos o fallecimiento en el año posterior al alta. Valorar la fragilidad puede ayudar a orientar la toma de decisiones y planificación de cuidados.
ObjetivoExplorar la percepción de los pacientes en relación con la valoración de la fragilidad en UCI.
MetodologíaEstudio cualitativo fenomenológico mediante entrevistas semiestruturadas en la UCI de un hospital público de complejidad intermedia. Participaron 13 pacientes con experiencia de ingreso en UCI. Se llevó a cabo un análisis temático del discurso siguiendo la propuesta de Braun y Clarke.
ResultadosSe identificaron tres temas y siete subtemas que sirven de eje para describir la experiencia de los pacientes: percepción de la propia fragilidad, el trabajo de lidiar con la fragilidad, y el valor del seguimiento de la evolución de la fragilidad. Los participantes entienden la fragilidad en contraposición a la fortaleza, desde una perspectiva multidimensional y vinculada con la idea la pérdida de capacidades. Intentan lidiar con la fragilidad haciéndola frente y luchando, tirando de recursos intrapersonales e interpersonales. Dan valor al seguimiento de la evolución de la fragilidad en tanto que se sienten considerados y apoyados.
ConclusionesLa narrativa de los pacientes evidencia la importante repercusión que un ingreso en UCI tiene en las dimensiones física y psico-socioemocional de pacientes y cuidadores. La valoración de la fragilidad y el seguimiento de su evolución al alta es valorada como importante para poder adecuar los cuidados y significativa en tanto que facilitadora de soporte emocional. Se hace evidente la necesidad de apoyo al alta en las diferentes esferas y de acompañamiento del paciente a lo largo de su recuperación que permita un pronto retorno a su vida previa al ingreso.
Frailty is common in patients admitted to the intensive care unit and is associated with a worsening of outcomes in terms of morbidity, mortality, and quality of life.
What it contributes?This study provides information on the significance of frailty for patients admitted to the intensive care unit and the value they attach to its assessment and monitoring of how it progresses.
Implications of the studyThe results of this study provide clues to guide the assessment of frailty in the intensive care unit, and for the development of care interventions and follow-up and support programmes after discharge.
Frailty is common among patients admitted to intensive care units (ICUs) (35% over the age of 65) and is associated with poorer outcomes.1 We understand frailty as a physiological syndrome characterised by a decrease in functional reserve and resistance to stressors, which makes the person more vulnerable and limits their ability to recover from injury or illness.1 Although frailty is strongly correlated with age, it is not limited to older people. For example, young people with significant comorbidities, poorer quality of life, and more frequent hospitalisations than older people without frailty must be considered frail.2
Patients' level of frailty prior to critical illness and ICU admission is recognised as a determinant of the complexity and duration of supportive interventions and recovery outcomes.2,3 There is also evidence of an association between baseline frailty prior to critical illness and the development or worsening of functional and cognitive impairment in ICU survivors.2,3 In addition, studies confirm that one year after admission, 42% of unplanned admission patients and 27% of planned admission patients were more frail.4
Assessment of frailty prior to critical illness provides a frame of reference to guide expectations of survival and recovery, as well as consensual decision-making.2,3 This decision-making extends beyond the ICU stay itself, allowing the design of specific care pathways that facilitate the transition of critical patients to other care settings, preventing disability, and promoting better recovery and quality of life.
There are numerous frailty screening tools in the literature; the Clinical Frailty Scale (CFS), Frailty Index, Frailty Phenotype, and Frailty Assessment Tool for Intensive Care Unit are some of the most widely used in studies to assess the impact of frailty on ICU outcomes.5 Some of the limitations of frailty assessment lie in the heterogeneity of measurement tools, without a "gold standard" reference or scales specifically validated for the ICU.5 A study is currently underway in Spain to adapt and validate the Clinical Frailty Scale (CFS) and the FRAIL scale in ICU patients of different ages, female and male,6,7 which will contribute to the establishment of routine frailty screening in ICUs.
However, in addition to the effort to validate scales for the specific context of the ICU, it must be considered that the concept of frailty has negative and stigmatising connotations that may contribute to missed opportunities in identifying the level of frailty and, consequently, making appropriate interventions.8 The lack of clear and homogeneous concepts for understanding frailty and the reliance on subjective assessment introduce a risk of bias that threatens the validity and interpretation of the results of screening tests.9 In this sense, it is necessary to explore users' perceptions of frailty and their attitudes towards its assessment in order to guide clinical practice. Future evidence will enable screening to be carried out not only with validated tools, but also in a sensitive way that promotes positive attitudes towards screening and assertiveness in decision making. There are several qualitative studies that attempt to inform and guide the assessment of frailty from the user's perspective.10–13 However, these studies are limited to the assessment of frailty in the context of older people (community and residential care settings).
In light of the above, the general aim of the present study is to explore users' perceptions of frailty assessment in an ICU setting. More specifically, it aims to explore their perception of the concept of frailty, describe the experience of frailty in the context of admission to the ICU and at discharge, identify attitudes and recommendations regarding the assessment of frailty, and identify care initiatives to prevent the risks of frailty during admission to the ICU.
MethodologyA qualitative study with interpretive phenomenological approach was conducted with the aim of exploring the way frailty is perceived through experiences, the meanings that surround them and are defined in the psychic life of the individual. To this end, we followed the proposal of Van Manen14 who maintains that the object of phenomenology lies in transforming lived experience into a textual expression of its essence, identifying and describing significant situations of the self and explaining what we are like in our day-to-day lives.
The study was conducted in the ICU of an intermediate complexity public hospital of the Madrid Health Service (SERMAS). It is a multi-purpose ICU, with 18 general beds and 6 specific beds for severe burns, with around 1,000 admissions per year.
The study population was all those patients who had previously participated in the study "Adaptación y validación de escalas de fragilidad en los pacientes críticos ingresados en unidades de cuidados intensivos de España" (Adaptation and validation of frailty scales in critically ill patients admitted to intensive care units in Spain) (PI20/01231). That is to say, patients over 18 years of age who had been admitted to the ICU for 48 h or more (with the exception of those admitted with a diagnosis of present or imminent brain death) and who voluntarily agreed to participate in the study. From all the patients in the aforementioned study, we selected those whose one-year follow-up after hospital discharge had ended and who had been assessed on admission with the FRAIL-Es scale6 as frail (3–5 points) or pre-frail (1–2 points), or with the Clinical Frailty Scale-Spain (CFS-Es)7 as frail (levels 5–9) or vulnerable (level 4).
Purposeful sampling was carried out considering the following experience criteria: patient's sex (female/male), age (>65 years and <65 years), level of frailty (pre-frail and frail; according to the FRAIL-Es or CFS-Es scales), reason for admission (medical/surgical), type of admission (unplanned/planned) and transfer of care on discharge (home, residential care institution, rehabilitation institution). The sample was recruited by telephone from the list of participants and contact details of the PI20/01231 project, once the one-year follow-up period after hospital discharge had ended. When the information had been provided and the patients having agreed to participate, a second call was made to arrange the day, time, and place of the interviews. The size of the sample was determined by the data analysis process and the saturation of the thematic groups. Finally, the sample consisted of 13 participants whose experience characteristics can be seen in Table 1.
Experience characteristics of the participants /respondents.
| Code | Sex | Age | Level of frailty | Reason for admission to ICU | Type of admission to ICU | Length of stay in ICU/total hospital stay | Level of severity in ICU | Transfer on discharge | Barthel Index | Lawton and Brody | Link with rehabilitation assistance services | Other support/aid resources | PCS | MCS |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| P1 | Female | >65 | Frail/frail | Unplanned | Medical | 17 days in ICU/84 days in hospital | 61 | Home | 70 | 5 | Yes | Family care | 27.22 | 44.27 |
| P2 | Male | <65 | Vulnerable/frail | Unplanned | Surgical | 14 days in ICU/42 days in hospital | 59 | Functional recovery centre, 59 days | 95 | 5 | Yes | Family care | ― | ― |
| P3 | Female | <65 | Vulnerable/frail | Unplanned | Medical | 18 days in ICU/46 days in hospital | 59 | Functional recovery centre, 59 days | 100 | 8 | Yes | Family support, lives alone | 23.45 | 69.32 |
| P4 | Female | >65 | Vulnerable/frail | Unplanned | Medical | 6 days in ICU/9 days in hospital | 59 | Home | 100 | 8 | No | Family support, lives alone. Call pendant | 43.13 | 59.55 |
| P5 | Female | >65 | Vulnerable/pre-frail | Unplanned | Medical | 4 days in ICU/11 days in hospital | 62 | Home | 70 | 5 | No | Lives with her daughter, good family support | 25.73 | 44.79 |
| P6 | Female | >65 | Vulnerable/pre-frail | Unplanned | Medical | 13 days in ICU/13 days in hospital | 80 | Home | 95 | 8 | No | Lives with a son, but independently | 33.01 | 61.97 |
| P7 | Female | <65 | Vulnerable/frail | Unplanned | Surgical | 12 days in ICU/44 days in hospital | 41 | Functional recovery centre, 59 days | 75 | 2 | Yes (private rehabilitation and at home every day with her husband) | Caregiver, husband has left work to care for her | 43.07 | 53.37 |
| P8 | Male | >65 | Vulnerable/frail | Unplanned | Medical | 3 days in ICU/13 days in hospital | 68 | Home | 80 | 3 | No | Cared for by wife | 40.4 | 25.58 |
| P9 | Female | <65 | Frail/frail | Unplanned | Medical | 3 days in ICU/7 days in hospital | 45 | Home | 85 | 1 | No | Cared for by husband and family financial resources | 35.81 | 26.65 |
| P10 | Female | >65 | Frail/frail | Unplanned | Medical | 7 days in ICU/41 days in hospital | 55 | Home (hospital to home) | 85 | 7 | No | Professional caregiver | 20.33 | 57.41 |
| P11 | Female | >65 | Frail/frail | Unplanned | Medical | 3 days in ICU/10 days in hospital | 57 | Home | 40 | 1 | No | Family care | 40.07 | 49.6 |
| P12 | Male | <65 | Not frail/pre-frail | Unplanned | Surgical | 19 days in ICU/36 days in hospital | 67 | Functional recovery centre | 95 | 4 | Yes | Family care and rehabilitation | 46.85 | 36.1 |
| P13 | Male | >65 | Vulnerable/pre-frail | Unplanned | Surgical | 3 days in ICU/17 days in hospital | 74 | Home | 100 | 7 | No | Family support | 47.81 | 54.31 |
Level of frailty (assessed one month before hospital admission with CFS-Es7/FRAIL-Es6). The Clinical Frailty Scale-España (CFS-Es) classifies patients as: frail (5–9 points), vulnerable or pre-frail (4 points) and not frail (0–3 points). The FRAIL-Es classifies patients as: frail (3–5 points), pre-frail (1–2 points) and not frail (0 points).
Level of ICU severity (assessed on admission to the ICU with Simplified Acute Physiology Score 3 [SAPS 3]15).
Barthel Index16 (assessed at time of interview). Independence: 100; mild dependence: 95; moderate dependence: 65–90; severe dependence: 25–60; total dependence:0–20.
Lawton and Brody Instrumental Activities of Daily Living scale17 (assessed at time of interview). Independent: 8; mild dependence: 6–7; moderate dependence: 4–5; severe dependence: 2–3; total dependence: 0−1. Scoring the same for males and females.
Links to rehabilitative care services: at any time from discharge, functional rehabilitation.
12-item Short form Health Survey (SF-12)18: PCS variable (Physical Component Summary-physical health-related quality of life) and MCS (Mental Component Summary-mental health-related quality of life). Taking the median of the population in which the instrument was validated as the reference point, value below 50 are considered bad data and values above 50 are considered good data (the higher, the better perceived quality of life).
ICU: intensive care unit.
This took place between February 2023 and May 2024 (15 months) through semi-structured qualitative interviews using a purpose-designed guide (Table 2). In designing the guide, the researchers took into account previous similar studies with older adult patients and their own clinical and research experience. The interviews were conducted by two nurses with a research role. All interviews were face-to-face, either in hospital or at home (depending on the informant's preference and functional limitations in terms of mobility). The interviews were audio-recorded, with the prior consent of the informants, and then transcribed Verbatim®. The average duration of the interviews was 45 min. They were conducted on average 498 days after discharge from the ICU. Occasionally, they were conducted with the support of the family caregiver, who helped to reassure and clarify to the respondent.
Interview guide.
| General research aim To explore the perception of users/families in relation to the assessment of frailty in an intensive care unit | |
|---|---|
| Specific aims of the research | Dynamic interview questions |
| To explore their perception of the concept of frailty | 1. What does the word "frailty" mean to you? |
| 2. To what extent do you think you (or your relative/loved one) might be frail? | |
| 3. How do you feel about your own (or your relative's/loved one's) frailty? | |
| To describe the experience of frailty in the context of admission to ICU | 4. What was the experience of being admitted to the ICU in relation to your frailty (or the frailty of your relative/loved one)? |
| 5. How do you think your own frailty (or the frailty of your relative/loved one) may have influenced admission to the ICU, progress, and subsequent recovery after discharge? | |
| To identify attitudes and recommendations for the assessment of frailty | 6. What was the experience of actively participating in the frailty assessment through the questionnaires? |
| 7. To what extent do you think the questionnaires captured your perception of frailty (in relation to yourself or a family member/caregiver)? | |
| 8. How do you think of frailty assessment might apply to people admitted to intensive care? | |
| 9. What recommendations would you make to healthcare professionals regarding the assessment of frailty in people admitted to ICU? | |
| To identify care initiatives for the prevention of risks derived from frailty during admission to ICU | 10. What special care do you think you would have needed in the ICU to meet the needs of your frailty? And after discharge? |
| 11. What resources do you think would be appropriate to support people admitted to an ICU and their families? | |
ICU: Intensive Care Unit.
A thematic discourse analysis, as suggested by Braun and Clarke19 was carried out in the following stages: (1) transcribing the data, reading and rereading the material, jotting down ideas (using mind maps and initial notes); (2) coding the most relevant aspects of the data (using Atlas-ti 8.2 software), compilation of relevant data for each code (definitions of codes and quotations assigned to the codes); (3) preparation of a thematic map of the analysis (using relationship networks and conceptual maps); (4) interpretive analysis of each theme, delving into the meaning (definitions, characteristics, attributes, etc.) through intermediate memoranda; and (5) selection and final analysis of the selected text fragments and writing a report of the analysis (advanced memoranda).
Ethical considerationsThe Centre’s Ethics and Drug Research Committee (CEIm22/52) approved the study. The rights of the respondents in terms of autonomy/self-determination were respected at all times. All participants were informed of the aims of the project, what would be required of them as participants and the potential benefits they could expect from participating. This information was provided verbally during the recruitment call and in writing with verbal reinforcement at the time of the interview. Consent to participate was obtained in writing through an informed consent document. Care was taken to ensure the anonymity of informants by coding the interviews and eliminating any content that could reveal their identity. All information generated was safeguarded by the principal investigator. This research is considered to be of a sensitive nature, which required a constant attitude of reflexivity and adaptation of procedures to ensure the safety of respondents in terms of emotional damage.
Quality criteriaThe benchmark quality criteria considered were credibility, transferability, and confirmability.20 To achieve these, strategies such as triangulation of analysts, detailed description of the research process, review of findings by an expert in the field of study (critical friend), and the above-mentioned constant attitude of reflexivity were implemented.21
ResultsThirteen respondents participated (38.5% frail before admission and 61.5% pre-frail; 9 women and 4 men), of whom 8 (61.5%) were over 65 years of age. Of the patients under 65 years of age, 2 were men and 3 were women. All admissions were unplanned, of which 64% were for acute illnesses (55% frail). All admissions for surgery were for pre-frail patients. The mean stay in the ICU and hospital was 9 and 29 days, respectively. In 69.2% of cases, discharge was to home (in one case as part of the home hospitalisation programme). The remaining patients (30.8%) were transferred to functional recovery clinics. At the time of the interviews (average of 498 days after admission), the respondents reported a mean score of 83.8 for the Barthel index and 4.92 for the Lawton and Brody scale (moderate dependence).
The findings that respond to the research objectives were then reported through the themes identified in the participants' discourse and condensed in Fig. 1.
When the respondents reflect on the concept of frailty, they bring up adjectives such as brittle, weak, or easily ‘shattering’ or ‘breaking’. Just as fragile materials break because they are unable to deform under the stresses exerted on them, so, according to the narratives, frail people are more likely to fall ill or have a worse prognosis in a health-disease process. Q2. Well, being fragile… for me at the moment it means breaking in a way. Q11. (Family caregiver) (I see him as frail in the sense that I see him as very… like… anything could happen to him. Well, when I see him… I see him as vulnerable. So, for me (frailty) is this: the possibility that something could happen to him at any moment…
In contrast to frailty, they refer to consistency, toughness, and solidity, which the respondents summarise in the idea of 'having energy', 'being strong', and 'doing things'. Q5. (The opposite of being frail) It's having a lot of energy or doing things. That's the only thing I understand. It's being strong and (having the ability to) do things, something like that. That's what it is for me. Q11. Well (frailty) is a lack of strength, anything, frailty of movement, frailty of… lack of strength, that you are not strong. Q12. By toughness I mean that I have to go through this, and I have to adapt. That's what's hard. That's important toughness.
The respondents consider that people can be physically and/or mentally frail. When they talk about frailty in terms of weakness they think of the physical dimension. On the other hand, when they do so in terms of toughness or solidity, they mainly consider the psycho-socio-emotional dimension. Q2. (People can be) frail in terms of their mental health or physically. […] I am at high risk of being frail because of alcoholism, because of what has happened to me, because of my mental health. Q4. Physically, no, physically I couldn't even stand up. Mentally, yes, it was. I consider myself a very strong person. I have (always) been a fighter, very strong, and a warrior.
When talking about frailty, the participants refer to their experiences of deficit, loss of functional capacity, and dependence. In their discourses, these terms are interrelated to the point of integration and fusion, losing the limits that define each of them individually (Fig. 2). Q1. Well, frailty is… that I (can't) manage certain things. For example, if I go to have a bath, if I get up to make myself a coffee…. That's what I see as frailty. Q4. For me, frailty is that I don't feel like I used to. The things I do at home… that I go out and I'm sort of drunk, and I'm at home and I trip every other step. Q6. For me, frailty is having to depend on people. Until last year I didn't depend on anyone and now I do because I get very tired when walking, when climbing hills (in other words, for you frailty means depending on others). Depend, yes.
Far from placing the emphasis of their discourse on frailty in terms of deficiency, the respondents focus on the functional level (everyday life). Thus, the inability to carry out activities in the way or within the margins of what each person considers normal (in comparison with their situation prior to admission to the ICU) takes on special relevance. All participants recognise having lost abilities that they consider essential to cope with the needs and demands of daily life. Q1. I feel very limited. Q4. Well, I can do what I can do, but not as easily as before. I get tired more easily now. I used to walk a lot from here to (there) every day. Now I go down the street and every 10 min I have to sit down. Q9. I don't think I'm any use to myself. I get tired doing anything. I can't walk because if I walk too much, I get short of breath.
In this sense, the notion of dependence arises, which is interpreted as not being able to lead the autonomous life they led before; not being able to manage the activities of daily living (ADLs) on their own. Dependence is seen as negative in the sense of undesirable. The respondents claim that they do not like being dependent on others and work proactively to achieve the greatest possible independence. Q7. Until what happened to me last year, I didn't depend on anyone and now I do […] It's the worst thing that's happened to me. It's what makes me most angry. Q9. When I have to go to the toilet, I get up and go myself so that I do not have to look for him (the family caregiver) and bother him. In that sense I have become autonomous. Going to the toilet by myself, putting on the respirator by myself… I put the mask (non-invasive ventilation) on myself, I take it off myself when I'm really overwhelmed…. I have become autonomous in these things.
Participants have no memories of their time in the ICU, or if they do, they are confused or associated with delusions and altered perceptions. Their experience of frailty is brought to their attention in the context of their discharge from the ICU to the ward and is clearly evident when they are discharged to their homes or other rehabilitation facilities. They define their experience of frailty as a process of constant work and resource mobilisation.
Letting go as opposed to facing up and fightingAfter being admitted to intensive care, respondents realise that they will never be the same again. Q9. You realise that you are now a very frail person, that your health will not return to what it was. You know that you are not going to get better. […]. I am already weak. I am a frail person. Q3. You are not the same. The ideal would be to recover, but you will never be the same. You are left frailer, punished. A frail person has to adapt to their new circumstances because they have no choice but to live as comfortably as possible.
In the face of this, different responses can be observed, which could be summarised by the idea of ''pushing through'' and continuing to fight, or ''letting go or letting things happen'', or ''settling in''.
''Pushing through'' implies a commitment to the process of coping and adapting to one's current situation and new circumstances in order to try to live as comfortably as possible. This process involves: becoming aware of one's own frailty, being motivated to face it, identifying one's own available resources, mobilising resources, and managing self-care. Participants identify themselves as central actors in this process. Q2. Fortunately, as far as things go, I’m improving quite a lot. I spend all day walking around, doing things, puzzles, beadwork […] Because fragility is very much about the (person) themselves. […] Feeling good about yourself, having good mental health is very important for […] pushing through. Q11. (Family caregiver) He has his limits, he is extremely tired. But you can see that he keeps pushing through every day. We rely on each other. He tells me: come on, let's go, you have to eat, you have to do I don't know what. And I tell him: come on, let's get out of bed. We are relying on each other in this weakness. Q13. I have seen people who have died on their own because they haven't had that thing of: ‘I have to live, I have a family, I have to look after them…’ I have seen more than one die like that.
In contrast to this proactive attitude, the passive attitude of ''letting go'' is occasionally identified in the discourses. Q8. (Caregiver) […] They used to be able to bear the pain better (…) now less and less. Now they lie in bed all day, all day. They have breakfast, maybe now they'll spend ten minutes on it and then go to bed, until lunchtime, they get up, have a quick lunch, and then back to bed. They get up for dinner, have dinner and then back to bed. (Patient) […] Because my head is not in the right place… I feel really bad about how I am. I don't feel like doing anything.
Different resources for coping with frailty are identified: intrapersonal (psycho-emotional strength), interpersonal (family and community support network), and structural (service provision and access).
Intrapersonal resources focus on the idea of mental strength or intrinsic capacity, which is to say, the person's capacity, from a cognitive and emotional point of view, to face the demands of everyday life, or the capacity to adapt to new needs with maximum efficiency and happiness. The respondents refer to aspects such as ''character'', ''strength'' and ''motivation to keep going''. They also mention expectations like: ''carrying on living my life independently for as long as I can'', ''carrying on being as useful as possible''. Mental strength (in terms of resilience, intrinsic strength, or strength of character) emphasises attributes such as courage, a positive attitude, perseverance, humour, hope, and gratitude. Q1. I think you have to work on your frailty with your mind. (You) tell yourself ''I'm going to be able to, I'm going to be able to''. Your mind makes you be brave and be there. Otherwise, there's not much you can do. Q10. ''I often think about it and say: ''I'm a very strong and brave person, because not everyone can handle this''. They are very difficult things to bear as I bore them (and bear them).'' Q3. I think that (the health problem-illness that led to admission to the ICU) gave me strength and gave me spirit and the (ability to) overcome. I have to resist here and… I have to do […] I think it's a mechanism like resilience or internal resistance.
The family and the community environment are understood as a support and resource for frailty prevention and care.
Family care becomes essential after hospital discharge and return home for the provision of basic care. The respondents allude to the need for help with self-care for feeding, bathing/hygiene, elimination, personal grooming, and walking. They are aware of the burden of care in the family environment and complain about the lack of resources to support the family to take on changes and perform the role of caregiver. Q5. I couldn't be on my own… because I fell and cracked my hip and had to stay in bed for a month. My son is the one who has been taking care of me. Q6. No, because at first, I couldn't manage on my own, but my daughter-in-law and my sister-in-law were there, they brought me food every day for the first few days. Q9. I find that I’m a hindrance to him, but I also know that I’m company. It is tiring for him, psychologically tiring, to be there. Having to look after a person who is ill is very tiring.
The community environment is essential for rehabilitation. The respondents refer in particular to socio-cultural facilities as very valuable resources of support in proximity. These spaces are not only a source of activities for rehabilitation, occupation, and recreation, but also a space of community support. They report that spending time in a community context helps them to focus their thoughts on a task, to distract themselves, to escape from their situation, and to feel useful (in terms of contributing to the community). Q4. We did that among the older women at the centre where I go. We did it all with a needle and then we sewed it. We left it ready for the men to place it later.
The participants also refer to resources at a more macro level. These resources would be related to legislative aspects and access to social and health services and health products. At the legislative level, young respondents value the recognition of disability and invalidity. This provides financial resources that they consider essential in order to be able to deal with frailty and its medium- and long-term consequences. Q1. And, thanks to this, I have now been given a 70% disability rating and off we go! Q2. Well, yes, I'm sorry, that's the way it is, financially I'm great, better than ever, because on top of that I've been given disability (benefit). Others are in court cases, and I don't know what. The truth is that I was lucky.
With regard to the network of social and health resources, the participants attach special importance to the transfer of care from hospital to home. They mention the difficulties and perceived shortcomings with regard to the guarantee of continuity of care to cover basic unmet needs and BADL. Q12. I needed help during the first few days. (You need) someone to accompany you, because it would be very helpful for people who don't have anyone (family caregiver).
Regarding access to healthcare products, they bring up the need for the system to facilitate access to materials that help adapt the environment to the person's needs, which are essential to be able to perform or assist in covering BADL.
Occasionally, they refer to economic frailty (a state of greater vulnerability linked to a decrease in the availability of and access to material-instrumental resources to help with BADL and support in rehabilitation processes). Q2. I miss the material resources as well. For example, I had a wheelchair that they left me. People who need a wheelchair have to get one as soon as they leave the hospital. People can't be without a wheelchair!
The process of assessing frailty and its consequences after admission to the ICU and after hospital discharge, according to the participants, helps give added value to care (Fig. 3).
The perception of feeling ''valued''
The respondents show their gratitude for the follow-up they received during the year after being discharged from the hospital. They felt supported through this. They perceive that the professionals have been ''caring for them''. They appreciate the fact that they are interested in their situation and progress. They feel ''valued'' and ''considered''. Q2. Well, very good, I thought it was good. I thought you care about the patients and you’re looking out for us.
The follow-up calls are interpreted as a space for interaction and conversation with another person who is interested in ''you and your story''. In this sense they feel fortunate. Q1. Well, I think it's good that they value us, don't you? It gives us confidence to know that they are thinking about us and that they can help us. I think so, they should value us. Q6. (I value the follow-up to assess frailty) for the encouragement they give you. Because I was in a very bad way when I left here. It was really good for me to talk to someone and tell them what was happening to me. Then the person who had been calling me all year (and I) were already friends. In May he said to me: ''I'm going to discharge you now, I won't call you again''. I said: ''OK, I'm sorry.'' He's been my friend for a year. Q13. It made me very happy when he called me: ''How are you feeling? '' ''Well, good '' Yes, it made me very happy because it made me feel like they were thinking of me. I said: ''This is too much. '' And my wife asked: ''What's wrong? '' ''They called me from the hospital to see how things were going.'' Wow, it's so nice that they remember someone. It gave me incredible joy, really.
They also appreciate some actions derived from this follow-up that facilitated continuity of care, such as access, coordination, and grouping of medical appointments. Q9. Everything I found in you (researchers who carried out the follow-up) is good. It was something (the follow-up) that was good for me. When I mentioned something about… I don't know if I had been sent for a test or something, a colleague ran to see if I’d had it or stopped having it.
Some respondents allude to the contribution that the follow-up has made to raising awareness of their own frailty and its consequences. This mobilises intrinsic motivation and commitment to their own recovery process. Q1. Well yes, yes, the questions they asked me were good for me because they made me reflect and made me value what they were doing for me and what I could do for myself.
With regard to the questions asked to assess frailty, the respondents did not report any difficulty in answering them, they found them relatable and relevant to them. They also alluded to the fact that the content of the questions reflected the notion of frailty as they understood it. P6. They asked me if I was leaking pee, poo, if I could do things around the house on my own, if I was still dancing… They always asked me (about) dancing. I gave up dancing. If I go shopping on my own, I do everything around the house on my own, and its a bit house to have to get around
Recommendations for improvement should be understood from the respondents' interpretation of the follow-up process, that is, as a care intervention and not so much as participation in a research project. In this sense, they recommend that this follow-up be carried out with all patients admitted to the ICU.
They consider that psycho-emotional support and care is fundamental and point out, as a consideration for improvement, the possibility of having explicit support in this area (both for the sick person and for the family).
Q6. Well, maybe a psychologist or something… if she's very down. It's not my case because I'm not… I'm not down, no. But maybe there are people who do get down. They also consider it important that the follow-up serves to channel access to resources (mainly rehabilitation). Q7. I think it's good that they ask you the questions, but you don't get (something) to solve them (the needs) at all. I would need them to send me someone to make me exercise and things to get me moving… to send someone to my house. That's what I miss a lot. Q9. (Caregiver). The follow-up has been by phone all this time. I think the phone makes you a bit cold in conversations and terser in your responses. You can't develop on things in the same way as you can in person. Maybe by meeting up instead of all the calls and the first and last being face-to-face (at home).
The participants understand frailty from a multidimensional perspective. Physically they feel tired, without energy, without strength, and limited. Despite this, they perceive themselves as emotionally strong. This strength has helped them to overcome the limitations they have had to struggle with, and which have led to a change in their life (loss of capacity and dependence). The balance between physical frailty and mental strength is what defines the perception of vulnerability. When it comes to dealing with frailty, vital motivations such as being as independent as possible, caring for others, or not being a burden give meaning to daily work. The respondents highlight family support and the support of the community as essential sources of support.
In the same vein, other studies focused on exploring the perception of frailty in older adults find that the perception of frailty is linked to lack of vitality, fatigue, and weakness, with increased dependence and need for help with BADL.22 The loss of physiological reserves is intertwined with concern about being dependent on others, isolation, and uprooting from the relational environment and psychosocial problems. This highlights the complex interaction between psycho-emotional and social vulnerability, and frailty.23,24 In this respect, authors such as Yueh et al.22 indicate that positive thinking and family support are important management strategies for successful recovery in frail individuals. For their part, Patel et al.25 point out that recovery requires resources to work on the physical-emotional and social/relationship dimensions, the latter being fundamental for a safe transition of care that ensures good recovery.
Furthermore, all the respondents expressed their gratitude for the telephone follow-up every three months for a year. It made them feel valued, to feel that someone cared about them and this gave them strength. Although these calls were part of the study, in some cases, the patients believed it was follow-up by the hospital care team (in the referral hospital there is no follow-up unit for these patients). These findings are consistent with the perception of users of case management-oriented continuity of care programmes. In the study by Sandberg et al.,26 the participating users described the case manager as: a support who is there, who listens and gives emotional support; a source of security who has the process under control; a "navigation" resource who guides and helps with administrative procedures and access to healthcare resources. In the same vein, the older participants in the case management programme within the PRISMA-France project27 looked to the case manager for what they might expect from a friend: someone to keep them company, to be there to listen to them, and to defend them or their opinions.
Limitations of the studyAlthough the study population was considered to be those patients who had participated in the PI20/01231 multicentre study, the participants in the sample were limited to a single follow-up centre. This may condition their experience characteristics in relation to the social determinants of health.
The experience of frailty perceived by the participants at the time of admission to the ICU is very limited. The memories of the time spent in the unit are very limited and those that they are able to bring to mind are distorted or are retrieved from experiences of dreams or recurring memories in the form of nightmares or flashbacks.
Recommendations for clinical practiceIn view of all the above, it would be advisable to approach decision-making in the ICU in relation to the assessment of frailty from a multidimensional perspective, taking into account measurement scales related to the physical dimension of frailty, but also other tools that allow this level of frailty to be contextualised within the biographical reality of the patient and their psycho-emotional and social vulnerability. Interdisciplinary care planning discussions involving the person (as far as they are able) and the family would allow for personalised approaches consistent with their expectations, needs, and resources.28,29
Working with the ABCDEF Bundle of care measures30 during the admission of frail patients to the ICU can be especially necessary and significant in relation to the reduction or stabilisation of the level of frailty. However, it is necessary to introduce other care interventions early on that have continuity throughout the hospitalisation and transfer of care to the community that address psycho-emotional needs and the relationship and social connection.
In line with the above, and according to what we can gather from the respondents' discourses, it is necessary to design, implement and evaluate multicomponent and longitudinal care programmes from the moment the patient is admitted to the ICU (including the ward and transition to hospital discharge) until recovery (minimum follow-up of one year after hospital discharge).31 These programmes, based on the case management model, can be coordinated by nurses, who would be responsible for designing the care plan, continuous reassessment of the patient, and coordination with other social and healthcare professionals (doctors, psychologists, physiotherapists, and social workers) and care services to guarantee continuity of care from a comprehensive perspective.32
Future lines of researchHaving worked on the adaptation and validation of frailty scales for use in the ICU context (Clinical Frailty Scale-Spain and FRAIL-Spain) and on understanding the perception of users themselves in relation to frailty and its assessment, we consider it necessary to explore the perception of professionals regarding the use of these instruments to guide decision-making and care planning from a person/family-centred care perspective.
Furthermore, it is suggested that the next steps in research on frailty and survival after critical illness should be in line with the evaluation of the impact of care interventions in the ICU and in hospital wards, as well as the efficiency of strategies to guarantee the transition of care to hospital discharge that guide the design of care spaces and devices (as well as the definition of professional roles) that accompany survivors throughout their recovery processes and trajectories in an interdisciplinary, comprehensive, and integrated manner.
ConclusionsFrail and pre-frail patients admitted to the ICU are perceived as physically frail, recognising a notable loss of functional capacity compared to their previous situation and an increased level of dependence.
They recognise, however, that they have great mental strength that drives them to push forward in the search for the maximum possible independence. Support from their families and immediate community are fundamental resources for dealing with frailty after being discharged from hospital.
The assessment of frailty and the monitoring of its progress up to one year after hospital discharge is interpreted by the participants as an intervention of accompaniment and psycho-emotional support as well as a valuable resource to guarantee continuity of care.
Ethical responsibilitiesThe study was evaluated and found suitable by the Drug Research Ethics Committee of the University Hospital of Getafe on 11 November 2022 under file number CEIm22/52.
All participants were informed and agreed to participate voluntarily by signing the informed consent form prepared for this purpose.
FundingThis study was funded by a grant from the Health Research Fund of the Instituto de Salud Carlos III, PI 20/01231.
Susana Arias-Rivera is the Editor of the journal Enfermería Intensiva, therefore, the procedure described in the publication guidelines in these cases was used to evaluate this work. The other author has no conflict of interests to declare.
