Sandra Esperanza Mendoza-Rocha,1 Miriam Torres-Briones,1 José Manuel Rincón-López,2 Beatriz Adriana Urbina-Aguilar3
1Unidad de Cuidados Intensivos, Hospital General de Zona 50, Instituto Mexicano del Seguro Social, San Luis Potosí, San Luis Potosí; 2Unidad de Cuidados Intensivos, Hospital General de Zona 1, Instituto Mexicano del Seguro Social, Zacatecas, Zacatecas; 3Facultad de Enfermería, Universidad Autónoma de San Luis Potosí, San Luis Potosí. México.
Correspondence: Sandra Esperanza Mendoza-Rocha
Received: February 27th 2014
Judged: April 22nd 2014
Accepted: September 2nd 2014
Introduction: In everyday life people must deal with pain and physical, mental or spiritual suffering from illness on one or more occasions.
Objective: to describe the patients’ perspective on the nursing care received during the time spent in an ICU of a social security institution.
Methodology: Qualitative study done on patients hospitalized in the ICU (intensive care unit), at the Hospital General de Zona No. 50 of the Instituto Mexicano del Seguro Social, San Luis Potosí. We used a socio demographic document, a semi-structured interview and a field diary. The analysis of the information was qualitative and thematic.
Results: 4 dimensions were identified, 1) Meaning of the ICU, 2) Experience of patient treatment by nurses, 3) Perception of state of health and 4) Perception of the nursing care received.
Conclusions: the patients perceived the ICU as a frightening, unsafe, and undesirable place, from which decisive aspects emerged, such as the nursing care provided and the level of trust and safety inspired, making the difference between a positive and negative experience. Given these results, the expectations are: a) nursing staff fostering understanding of the health-sickness process in the critical patient, b) reaffirming the moral value of nursing, with regards to the protection, improvement and preservation of human dignity, and c) favoring a humanized nursing care, understanding that the effects of sicknesses and suffering are part of a human experience.
Keywords: Intensive care; Nursing care
In everyday life, people must deal with pain and physical, mental, or spiritual suffering from illness on one or more occasions; in some cases they must cope also with death. The meaning that people give to each experience of illness is unique and personal and depends on family, social, cultural, personal, and religious factors.1
The experience lived by patients suffering from serious illness is a novel, unexpected, "revealing" and "hard" experience for which the person does not receive preparation or induction of any kind in most cases.2
In intensive care units (ICU) special care is provided, and for this purpose a nurse with special qualities is needed, whose care means not only monitoring hemodynamic performance, identifying problems or administering medication by invasive routes, among others. Added to this, being a nurse means having an education based on the real interest of restoring the condition of the other, as well as the sensitivity to perceive, to understand feelings and maintain confidentiality, to act and to humanize their actions based on scientific knowledge.3
For those nurses who are in training and in hospital areas, a way to make an impact in the professional care that is being provided is through studies such as this, where the main actor, namely the patient, recipient of nursing care, has the opportunity to translate, from their perspective, the act of providing nursing care.
Knowing nursing care from the patient’s perspective makes it possible to break paradigms and change the act of care to benefit the patient.
The purpose of our research is to describe patients’ perception of nursing care received in the ICU at a secondary care institution of social security in the state of San Luis Potosi, Mexico.
Specific objectives: a) to know how the patient lives nursing care received in the ICU; b) to know the positive and negative experiences identified by the patients; c) to determine the factors associated with positive and negative experiences identified by the patients.
To answer the research question, qualitative methodology was used. The patient perspective on nursing care having been hospitalized in the hospital ICU was described. The research was conducted in a secondary care social security hospital in the state of San Luis Potosi.
The participants of this research were directly involved with the subject matter. Patients who were hospitalized in the ICU of the chosen institution, over 18 years old, and who had been in this area at least three days were included, and were interviewed with a time since hospital discharge of minimum one week and maximum one year. They were asked to recall their experience in the ICU, that they be willing to participate, and that their place of residence be in the state of San Luis Potosi. We excluded patients with verbal communication problems or mental disabilities which prevent them from telling their experience. Patients who could not be reached because of their file not being found, and those whose relatives did not agree for them to participate were excluded.
Methods of data collection: a) sociodemographic questionnaire; b) semi-structured individual interviews c) reflective field notes. The names of the participants were obtained from ICU intake and discharge censuses. The address and phone number to arrange the interview appointment were taken from the files provided in the institutional records. Out of a total of 168 patients counted from September 2011 to August 2012, only 60 patients fulfilled the required days of stay, and in the end only a total of nine patients were left who comprised the study population.
For this study, the use of three techniques of information collection were chosen: a) sociodemographic questionnaire, b) semi-structured individual interviews c) reflective field notes.
a) Sociodemographic questionnaire: this includes the participants’ characteristics: age, sex, occupation, marital status, religion, and education.
b) Individual semi-structured interview: the purpose of this technique was to obtain information about the perspectives on nursing care received by a patient hospitalized in the ICU. The semi-structured interview is a technique used by researchers who aim to gain qualitative information on perceptions, affective states, judgments, opinions, and representations of individuals from their personal perspective on the situation experienced. The semi-structured interview questions were open enough for the participants to express all that they felt, but specific enough so that the objective of the research was achieved. These interviews were conducted at the place and time that the participant decided; duration was 30 to 60 minutes. With the help of this interview a vision of the suffering and feelings of the patient in relation to nursing care was obtained through a systematic dialogue that gave them the freedom to express themselves widely about their problem. The interviews were conducted through a previously prepared guide (Table I).
Table I. Interview guide Tell us about your experiences with the care that nurses gave in your last stay of hospitalization in the ICU How did you experience nursing care in the ICU? Mention your positive experiences Mention your negative experiences What factors do you think made these positive experiences happen? What factors do you think made these negative experiences happen?
c) Field notes: this contains three types of notes: methodological, theoretical, and reflective. Methodological notes were intended to describe and reflect on the whole process of research, developing and identifying eventualities resulting therefrom. The reflective notes recorded all the expressions and reactions that the participant demonstrated at the time of the survey. Theoretical notes were used in order to document the expressions and reactions of participants during the interview. These notes were made by researchers; they contain theoretical elements of the process made in the investigation.
The data analysis was qualitative and thematic. This type of analysis is used in qualitative research and is comprised of four stages: a) segmentation, b) coding, c) categorization, and d) theming. Multiple readings were done per the interview (at least 10 readings), in order to highlight the gist of the participant’s experience; later, the data were analyzed. The synthesis of the results was established with the aim of developing a descriptive structure, unified by the meaning of the object studied.
The study group consisted of five women and four men. The ages ranged from 62 (the oldest) to 26 years (the youngest, a female patient); all had different occupations. Having analyzed the interviews, four major dimensions emerged, which corresponded to the objectives of this research, which were to describe the patients’ perspectives about care, having gone through a hospital stay in the ICU. The dimensions identified were: 1) the meaning of the ICU, 2) experience with the humane treatment of nursing, 3) perception of health status, and, finally, 4) the perception of nursing care received (Figure 1).
Figure 1. Dimensions of patient perception in the intensive care unit (ICU)
Dimension 1. The meaning of the ICU. This section refers to the perception that patients give the intensive care area. From the standpoint of patients, it refers to:
|Table II. Dimension 1, meaning of the intensive care unit|
|Theme||Code||Testimony of the patient (verbatim)|
|The experience as feeling of insecurity of physical environment||Silence, fear, habit, worry, uncertainty, danger, it frightened me, quiet, fear, they announce something, Martian communication, change, death||(Informant 1m) "I closed my eyes and I saw ugly things, I could not sleep, I was afraid to close my eyes and not open them again". (Informant 3mj) "The moments I slept I rested, but I was always afraid, maybe I'll fall asleep and not be able to wake up". (Informant 8p) "The sound of alarms and devices for me meant danger, something was happening to me."|
|The ICU, a place challenging wellbeing||Alone, unprotected, fear, gravity, unpleasant, scary, ugly area, customized area, specialized||(Informant 2j) "In this place you feel alone, unprotected, you don't know what you have, the therapy is another type of service, you get the attention you require and need". (Informant 3mj) "It is a unit that made me very afraid, my fear was of going there and not being able to leave". (Informant 9mc) "It is an area where one feels alone. It is very unpleasant to be there. All the dying people go there. I told my wife 'get me out of here'. It is very scary, I didn't like it. That area is very ugly."|
|The dullness of the ICU stay||Annoyance, anger, unpleasant, melancholy, was dry, sorrow, despair, fear of shots, nightmares, bad dreams, hallucinations, cruel, cold attention, depersonalized care, ghosts, wailing, fear of injections, do not tell you things, do not talk, pain, preferential treatment||(Informant 2j) "Being hospitalized is not nice, you don't leave, you don't get up, you don't see your family. I didn't see my daughters all the time that I was hospitalized. That gives you a terrible melancholy". (Informant 9mc) "It feels so ugly being there. I wanted to sleep, but I couldn't because I saw many ghosts. I said to my wife, 'get me out of here', because if not I'm going to die. I felt bad, not being able to sleep because I feel lonely, when they talk in codes it feels ugly".|
|Trust... important element in the ICU||Trust, peace and quiet, encouragement||(Informant 2j) "They should give you encouragement because everything depends on you, depends on the mirror where you see yourself". (Informant 4jc) "That you will be in good hands, that you will be relaxed, that they know what they are doing, that that is what they are here for, to lend a hand." (Informant 6g) "Yes they serve you well, they say that therapy means you will never leave, but I tell them, no, look- here I am."|
|Humane treatment in care is not only to care||Friendly, dedicated, patience, solidarity, awareness, trust, affection, human, professional, treated them as family, pampering, encourage||(Informant 3mj) "That they have a little more patience and solidarity with one, and not make slights at one for being sick, that they are very aware of what they are doing". (Informant 8p) "That they keep encouraging you, continue treating you like family". (Informant 9mc) "That they keep pampering us the way they pamper us, to give us encouragement, because this helps us not to fall into depression. That they continue feeding us with stimulation to talk, that they keep supporting us".|
|The stay in the ICU: lost in time||Loss of the notion of time, the noise of the nurses, nurses greeting, the clock||(Informant 2j) "They don't give you sun, you don't see light, you don't see if it is morning, evening, day, night, if it is raining, if it is cloudy". (Informant 7e) "You lose the notion of time, whether is it day or night". (Informant 3mj) "By the noise of the nurses, some coming and others leaving, when they greeted me 'good morning, how is your morning?' I realized then it was morning, and in the afternoon they introduced themselves 'I'm so-and-so and I will be here all afternoon'".|
Dimension 2. Experience with humane treatment by nursing. Perceptions were identified about nursing care in the ICU such as a life expectancy; the helping hand of nursing staff; communication between an open and a closed circuit of care; eye contact and physical contact; peace and quiet in the ICU (Table III).
|Table III. Dimension 2, experience of humane treatment by nursing|
|Theme||Code||Testimony of the patient (verbatim)|
|Nursing care in the ICU, hope for life||Very good, very well, appropriate, nice, responsible, formidable||(Informant 4jc) "I was treated very well. They understood me. They helped me". (Informant 6g) "They all treated me very well. I spoke to them and they paid attention. They all treated me well. I was very happy because thanks to all of them, I was treated well. I never saw anything bad". (Informant 7e) "There was very adequate by nursing care. I could tell that it was good, they did not let me die!"|
|The helping hand of the nursing staff||Kind, attentive, good treatment, to feel good, personalized treatment, treatment with kindness, up to the moment||(Informant 1m) "They tell you, 'cheer up'. They give you encouragement. They make you talk so you forget what you're living through". (Informant 2j) "I felt personalized care. I felt that I had a private nurse, attending to me specifically." (Informant 3mj) "I was very thirsty and she got them to give me a little water, I really appreciated the kindness of this young lady". (Informant 4jc) "When you come out of the sedative it makes you very thirsty. I asked for a lot of water and that was what I liked: they were always on the lookout and they gave me water with gauze, they did not leave me dry".|
|Communication between an open circuit and a closed one in care||Yes they tell you things, they explain, yes they said things, they talked to me, only on occasions, yes they inform||(Informant 2j) "They explained everything to me, 'am I going to do this to you', ' I am going to do that'". (Informant 6g) "They always talked to me when they were going to inject me or change my serum." (Informant 7e) "Sometimes, because the procedures already have it established with rules and schedule, but the one who explained things was usually the clinical cardiologist, the nursing staff really just looked at the little indications card and followed it".|
|Eye contact and physical contact, the peace and quiet of the ICU||They encourage you, trust, happy, peace and quiet, enjoyment, love, familiarity||(Informant 1m) "They looked you in the eye and it was already different: you felt that you were important to them. The ones who didn't look at you were just asking for the sake of asking, 'how are you?' 'how do you feel?'" (Informant 3mj) "The pat that they give you is a sign that you interest them, it gives us courage to carry on". (Informant 7e) "Physical contact was very rare, it was just one or two people, but doing it gives you confidence. Definitely physical contact helps you, lifts your spirits, you feel different from how screwed up you are". (Informant 8p) "When you feel they are looking closely at you, that they touch you, you feel the love of these people, simply touching someone's hand, it does good".|
Dimension 3. Perception of health status. This section addresses perceptions developed about the experience, such as the feeling of disability because of health status; family visits as relief from loneliness and waiting; and discharge as an experience of comfort (Table IV).
|Table IV. Dimension 3, perception of health status|
|Theme||Code||Testimony of the patient (verbatim)|
|The experience of the feeling of invalidity because of health status||Despair, you feel ugly, you feel bad, outdated, ashamed, spoiled, sadness, impotence||(Informant 5a) "Well, impotence from not being able to do what you always did, just the act of going to the bathroom, standing up, moving a hand to eat, without them you can't do anything". (Informant 9mc) "Emotionally, you know, ashamed. They make you feel like a child. I was not allowed to make any effort. I felt spoiled".|
|The family visit as relief from loneliness and waiting||Difficult, it meant a lot, distraction, happiness, really short, a pleasure||(Reporting 1m) "It is an area where you hardly see your family, because they let them in at a certain time, then time is up and they basically throw them out. It is difficult, I don't like to see them suffering, I wanted to spend more time with them, I wanted them to spoil me and tell me nice things so I would feel ok". (Informant 2m) "I longed for visiting time because it makes you feel better, the visit brings you information; it's contact with the outside." (Informant 7e) "There are occasions in which the patient is not prepared mentally to greet people. It gets you pretty depressed. There is an obsolescence of what you want and the established norm". (Informant 8p) "Happiness, I am in a place where I don't know if I will wake up tomorrow, I don't know if I will be here the next day, I took great advantage of their visits, to be looking at them, talking, the physical contact that I had with them was a great relief to me". (Informant 9mc) "I wanted them to be with me all the time, not for them to then get thrown out."|
|Discharge as an experience of comfort||Enjoyment, achievement, I am not so bad, nostalgia, anxiety, relief, better||(Informant 1m) "I was happy because I knew that if they brought me up a floor, it was because it was better." (Informant 2j) "Oof! Goodbye, therapy. Thank you, God, because you let me out of therapy. I'm going to wait for my turn in the operating room. Hopefully my turn is soon. There is a link between that place and you because you're there". (Informant 5a) "An achievement to know that I was no longer so bad, that I was going to start moving to do my things. I was happy because they took me to the floor". (Informant 9mc) "A relief because I was going to have more visits, I was really going to see sunset and sunrise".|
Dimension 4. Perception of nursing care, ranging from comfort to unpleasantness in the care of basic needs. This addresses the impressions and feelings that come from bathing as a comforting experience; unpleasant feelings when patients visited the bathroom; and the use of the diaper as a shameful experience (Table V).
|Table V. Dimension 4, perception of nursing care, from comfort to unpleasantness in the satisfaction of basic needs|
|Theme||Code||Testimony of the patient (verbatim)|
|Bathing as a comforting experience||Lovely, glory, fabulous, refreshing, fresh, more enthusiastic, pampered, therapy, clean, like a baby, at ease, relaxed, at peace||(Informant 2J) "I felt really lovely, glory, because it revives you when you are in that situation that you cannot fend for yourself, it is fabulous; bathing revives you '. (Informant 4JC) "I felt at ease because it refreshed me whenever they gave me a bath. I remember the wet sheets and the nurse scrubbing me".|
|The bathroom as a demeaning experience||Weird, embarrassing, degrading, shame, awkward, distrust||Informant 1M) "Weird, because only I know my body, and so they bathed me and removed my robe and started to scrub me and I felt embarrassed". (Informant 7E) "degrading, awkward, how are they bathing me, a separate person, how ugly '.|
|The use of diaper, a shameful experience||Embarrassment, shame, I felt bad, uncomfortable, difficult||(Informant 5A) "So much embarrassment. It is not the same changing a baby as changing an adult". (Reporting 6G) "Shame because I had never used a diaper, and that day there they put me in a diaper. I told them that I wanted to go to the bathroom but already I could not stop because they would be putting the catheter on me, I felt bad because of the diaper". (Informant 8 p) "There are modesty things, it is difficult to accept the diaper changing, you thank them because they do with without any kind of curiosity; it's uncomfortable." (Informant 9MC) "Shame. They told me not to feel uneasy. But it embarrasses me. I would tell them, "bring me the bedpan or basin" instead.|
Results from this research show how informants lived through the experience of being hospitalized in the ICU. These informants perceived the unit as a frightening, unsafe, undesirable place where critical issues arise, such as care provided by the nursing staff and the level of trust and security inspired, which make the difference between a positive and a negative experience. These issues were also considered by the participants in the study by Beltran Salazar.4 Barrio and Alarcon, cited by Gutierrez,5 mention that temporary disorientation and the feeling of not being conscious occur.
There is a great similarity to the findings in this study, which is manifested when they mention not knowing whether it is day or night. In the same study Gutierrez cites Bellido, who mentions that they may experience pleasurable sensations and hallucinations perceived as real, both products of medication. These perceptions are also seen narrated by the participants of this study when they report seeing ghosts. However, participants of this research showed that, in general, the treatment given in the ICU is good. Nurses are perceived as a united team, with enough capacity to help them regain their health; they see it as both physical and emotional support. However, they also emphasize the importance of increasing those professional values that enhance nursing care and thus contribute to a positive ICU experience.
Lilo et al., cited by Guierrez,5 talk about the views of a number of patients from Central Europe, who saw as worthy the critical care nurses that attended them, with quite positive results. Among the listed attributes they include: kindness, respect, safety, accessibility, professionalism, professional autonomy, and others. These attributes were also identified and listed by the people studied in this study. Informants also mentioned the great importance of nurses always keeping verbal, visual, and physical contact. This makes them feel important and loved, which generates trust and empathy as well, which favors transpersonal care, thus reducing negative experience in their time in the ICU, letting them temporarily forget their suffering.
This is consistent with Lemos and Nascimento, cited in the study of Barbosa,6 where they mention that looks, gestures, concern for the sick, and emotional commitment are effective alternatives to establish a bond with the ill person. In addition this breaks a biomedical paradigm which considers the human being as a sick body that needs to be brought back from imbalance.
For the informants, it is crucial to keep in touch with loved ones, because they are the link with the outside environment; therefore, it is imperative that patients maintain this interaction during visiting hours. This is consistent with reports by Barbosa,6 who mentions the family as the foundation of social coexistence of people, through which we learn to think, act, and react, receiving ethical, moral, and religious teachings with which we build our personality and way of seeing and living in the outside world.
For the respondents, it would be of great help in their experience in the ICU, and they perceive it so, for the nurse in charge to understand the great emotional burden for all human beings involved in not being able to satisfy their own basic needs, such as with personal hygiene and use of the diaper. These events are supplied entirely by nurses, which causes different sensations, making the stay in the ICU even more difficult, demonstrating that dependence on others contributed to the difficulty of the situation.7 In the study of Amoros et al.,8 participants positively valued the care of the nursing team and the protective measures undertaken in the ICU, in relation to the preservation of their privacy, which coincides with that described by participants in this study.
Patients perceived the ICU as a frightening, unsafe, undesirable place where critical issues arise, such as care provided by the nursing staff and the level of trust and security inspired, which makes the difference between a positive or a negative experience. With the results we hope:
It is necessary that nurses participate in the development of qualitative work with these patients, enabling better understanding of the patient and those subjective aspects that influence their experiences and which, undoubtedly, the nursing staff should take into account to achieve the quality and warmth of care needed and desired.