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The lived ICU experience of nurses, patients and family members: A phenomenological study with Merleau-Pontian perspective
Intensive and Critical Care Nursing (2011) 27, 273—280
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ORIGINAL ARTICLE
The lived ICU experience of nurses, patients and family members: A phenomenological study with Merleau-Pontian perspective Brigitte S. Cypress ∗ Lehman College, City University of New York, United States Accepted 6 August 2011
KEYWORDS Phenomenology; Qualitative research; Intensive care unit
Summary Aim: To describe and understand the lived intensive care unit experience of nurses, patients and family members during critical illness. Background: There is a paucity of research studies in the literature conducted on the triad of nurses, patients and family members looking at the experience of critical illness and their perspective of each, from the other. Methodology: A phenomenological approach and Merleau-Ponty’s existentials of corporeality, temporality, relationality and spatiality was used for this study. In-depth, open-ended interviews were, conducted and analysed using van Manen’s wholistic, selective and detailed line-by-line approach. Results: Five common themes (a) and three specific themes (b) emerged from the data: (a) family as a, unit, physical care/comfort, physiological care, psychosocial support and transformation; and, (b) advocacy, uncertainty and confidence in the nurse and the healthcare team. Conclusion: Examining embodied experience of corporeality, temporality, spatiality and relationality, opens new ways for coping amongst patients and their families, as well as care giving possibilities for the, nurses. This study affirms the mutual influence amongst the family, patient and nurses during a critical, illness experience and supports the tenets of family-centred care, which mandates the purposeful, inclusion of the family in all aspects of their loved one’s care. © 2011 Elsevier Ltd. All rights reserved.
Introduction and background
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Critical illness and the unplanned admission of a family member to an intensive care unit (ICU) is an extremely stressful experience (Williams, 2005) that can result in a number of physiological and psychological problems, not only for the patient, but also for family members (Chiu et al., 2004). The admission of a family member to an ICU may
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274 result in an emotional turmoil, role conflict, a high level of stress, interruption of normal home routines and potential changes in relationships amongst family members (Reider, 1994). Van Horn and Tesh (2000) stated that, ‘‘Family members of ICU patients may experience stressors that threaten both personal health and family integrity. Family members endure multiple concurrent stressors and exhibit numerous behavioural responses including changes in eating, sleeping, activity, family roles and responsibilities’’ (p. 40). Family emotions may then positively or negatively impact patient responses and recovery (Tracy et al., 1999). Highly technical equipment used to treat patients and complicated disease conditions in the ICU can become barriers that interfere with patient—family communications. Understanding the nurse—family relationships in ICU is extremely important especially if a family—patient relationship is compromised by the patient’s physiologic state (Maxwell et al., 2007). Nurses need to understand the family’s experiences and identify families’ needs associated with hospitalisation of critically ill family members in order to help them cope with this catastrophic event in their lives. The role that the family actually plays in the ICU may depend on the interactions and the types of relationships that develop between the nurses and the family of the critically ill patient associated with hospitalisation of their critically ill member. This knowledge is essential to optimise the family’s well-being and coping, so they can provide appropriate and effective support to their critically ill member (Kosco and Warren, 2000). Recognition of family needs and including them in patient care can lead to improved patient outcomes (Miracle, 2006). Cypress (2010) in her study, found that nurses, patients and family members are intertwined or one unit (family as a unit). A family-focused unit views a patient’s family as the unit to be cared for and organises care delivery around the patient’s family, as opposed to the more traditional patient-centred model (Henneman and Cardin, 2002). As emphasised by Institute of Medicine (2001), one dimension of patient-centred care is the accommodation of family and friends on whom patients may rely. This includes involving them in appropriate decision-making, supporting them as caregivers, making them welcome and comfortable in the care delivery setting, and recognising their needs and contributions and improving their access to information. The importance of involving patients and families in care and decision-making has been highlighted by numerous other groups, including the Joint Commission, who cited patient involvement as a holistic approach, a key safety strategy and a patient safety goal for 2007. (The Joint Commission on Accreditation of Healthcare Organizations, 2006). The phenomenological method, which examines subjective human experience, is commonly used in answering questions that are foundational to sound nursing science. It is also one that values individuals and the nurse—patient relationship, and one which embraces a holistic approach to the person (Van der Zalm and Bergum, 2000). Phenomenology as the method for this study aimed at describing the phenomenon of the experience of nurses, patients and family members during critical illness in the ICU as they present themselves in lived experience. Understanding the lived experience of the participants will help describe their lifeworld as real, meaningful and as experienced.
B.S. Cypress Merleau-Ponty’s (1964a,b,c) existentials was also used to describe the findings of the study because it is foundational in understanding embodied knowledge. In this study, patient’s embodiment (corporeality) is threatened by critical illness that has effects and meanings on their lifeworld, lived relation (relationality), lived space (spatiality) and lived time (temporality).
Methodology Research questions and objectives There is a paucity of research studies in the literature conducted on the triad of nurses, patients and family members looking at the experience of critical illness and their perspective of each from the other. The literature search conducted from 1998 to 2007 did not yield studies conducted on this triad. The majority of the studies related to critical illness and the families are also quantitative with a focus on selected areas of concern and/or selected individuals in the family (Eggenberger and Nelms, 2007). The purpose of this study was to describe and understand the lived ICU experience of nurses, patients and family members during critical illness using van Manen’s method of phenomenological research. The themes will be discussed in the context of Merleau-Ponty’s existentials of corporeality, relationality, spatiality and temporality. The research questions that guided this study were: (1) what are the patients’ and their families’ experiences of the nurse in an intensive care unit environment? (2) what are the nurses’ experiences of the patients and families in an intensive care unit environment?
Study design, sample, setting and ethical approval van Manen’s (1990) method of phenomenological research was used to describe and understand the lived intensive care unit experiences of the 15 participants during critical illness. A purposive method of sampling was also used to recruit participants for this study in which they were selected for their knowledge and experience of critical illness in the ICU. The nurses providing direct care in the ICU, patients and family members were provided with a brief written introduction to the study that describes all the information such as purpose, inclusion criteria, consent, total time needed to participate, remuneration and right to terminate participation at any point during the study. Potential participants were approached individually if they were willing to participate in the study. Participants were also asked to fully read the informed consent form, encouraged to ask questions and to sign prior to their participation in the study. Eligible participants included five nurses, five patients and five family members who voluntarily signed an informed consent. Tables 1—3 describe the demographic data of the participants. Recruitment continued until data saturation was achieved. No participants approached refused to be included in the study. No participants dropped-out from the study. Ethical approval was obtained from the institutional review board of the hospital where the study took place.
The lived ICU experience of nurses, patients and family members Table 1
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Nurse participants’ demographic data.
Participant number
Age
Gender
Educational level
Years of nursing experience
Years of intensive care unit experience
1 2 3 4 5
40 38 36 52 50
Female Male Female Female Female
MSN BSN BSN MSN BSN
17 7 3 25 20
15 5 2 20 18
Table 2
Patient participants’ demographic data.
Participant number
Age
Gender
Diagnosis
1 2 3 4 5
61 43 55 23 70
Male Male Male Male Female
Haemorrhagic stroke Diabetic ketoacidosis Asthma, emphysema, respiratory failure Multiple gunshot wounds Exacerbation of congestive heart failure
Table 3
Family members participant’s demographic data.
Participant Number
Age
Gender
Relationship to critically ill patient
1 2 3 4 5
62 70 45 38 60
Female Male Female Female Female
Wife Husband Mother Father Husband
This study was conducted in an adult ICU in an urban, nonprofit, nonsectarian community hospital.
Data Collection and procedure The data were collected over five to six months during the year 2008. Data collection for the patients and family member participants consisted of two one-hour unstructured or open-ended interview audio taped interviews that took place in a quiet, private room on the medical—surgical floors where the patients were transferred. The nurses were interviewed in different venues of their choice ensuring privacy and confidentiality. The second interview was conducted four days after the first interview. The interview for nurses was started with a general lead question — ‘‘Tell me about your experience of the patients and family members in the ICU.’’ The patients and family member’s interviews commenced with an open-ended question — ‘‘Tell me about your experience of the nurse in the ICU.’’ These questions put the interview in a context for both the researcher and the participant. All participants participated in the two interviews. Participants were enrolled until new information was no longer forthcoming, data saturation was achieved, and existing narratives were adequate in describing the phenomenon of the ICU experiences of patients, their family members and the nurses during critical illness. Repetition and confirmation of previously collected data that also include salient
points or themes were noted as the interview of each participant went on within a specific category. The researcher was able to recognise the repetition and determined that each category confirmed her findings rather than added new information. This repetition of themes signifies the completion of data collection for the phenomenon of this study. Audiotapes were transcribed verbatim by a professional transcriptionist after the interviews. Field notes were kept during the interviews and a reflective journal was also maintained during the research process. No pilot testing was done in this research.
Data analysis When data collection begins in qualitative research, so, too, data analysis. From the moment researchers begin listening to descriptions of a particular phenomenon, analysis is occurring (Streubert and Carpenter, 1999). Thematic analysis was further accomplished using van Manen’s (1990) wholistic, selective and detailed line-by-line approach. Following van Manen’s technique, the researcher listened to the tapes whilst reading the transcriptions for accuracy. Reading and re-reading of verbatim transcriptions or written responses of participants was also carried out. Each transcript was read in its entirety at least three times. The text was first attended as a whole (wholistic). Statements that illuminated the meaning of the ICU experience
276 of participants were highlighted and underlined (selective). These sentences were thematic sentences reflective of the participant’s experience. To have a better understanding of the participant’s perception of their ICU experience, a detailed reading approach was used. Every single sentence or sentence clusters in each interview was carefully analysed (detailed line-by-line). The aim is to further find revelations about the experience. Coding of narrative statements and interpretive summaries helped in identification of themes that emerged from the data. Responses from the three categories of participants were noted to be interrelated and integrating. Repetition of themes from and across each category was evident. Triangulation of the data from the three categories of participants yielded five integrating common themes and three specific themes. To be able to validate the findings related to themes, a doctoral-prepared nursing colleague and mentor who is an expert in qualitative research was asked to review the transcribed material. The researcher met with the mentor monthly for 6 months to code, reflect, review and analyse the transcripts until specific themes were illuminated and defined.
Methodological rigour and trustworthiness Reliability and validity are conceptualised as trustworthiness, rigour and quality in qualitative paradigm. Trustworthiness was estimated through the use of the criteria of dependability, credibility, reliability and validity (Creswell, 2007; Lincoln and Guba, 1985). The trustworthiness of the results of this study is enhanced by the detailed and accurate descriptions of the patients, their family members, and the nurses’ experiences and by continuously returning to the texts. Reliability was attained by giving special care to the collection, identification and analysis of all data pertinent to the study. The collected and analysed data were presented to the participants and they were asked if the narrative is accurate and a true reflection of their experience and in order to achieve credibility. The participants were given the opportunity to review, correct or modify the transcribed data. Credibility, the accurate and truthful depiction of participants’ lived experience, was achieved through prolonged engagement. The researcher spent 5—6 months with nurses, patients and their families in the ICU to learn the context of the phenomena and become oriented to the situation and to build trust and rapport with the participants. Dependability was achieved by having a doctorally prepared nursing colleague review the transcribed material to validate the themes and descriptors identified. Through reflexivity and bracketing, the researcher was always on guard of her own biases and assumptions that she might bring to the study but was also aware that complete reduction is not possible (Merleau-Ponty, 1962a,b,c).
Findings Five common themes, three specific themes and corresponding descriptors emerged from the thematic analysis of the participant’s narratives and are described below with a description of the theme and its illustrations in supporting quotes. The quotes used were selected because they provided a clear illustration of a characteristic of the theme.
B.S. Cypress PATIENTS Uncertainty
Common Themes Physical Care/Comfort NURSES
Physiological Care
Advocacy
Family as a Unit Psychosocial Support:
FAMILY MEMBERS Confidence in the nurse and healthcare team
(Communication) Transformation
Figure 1
Themes.
Each participant was assigned an identification number to ensure anonymity. Fig. 1 illustrates these themes.
Common themes Physical care and/or comfort The nurse participants in this study found that because of the inability caused by the patient’s critical condition, providing physical care and/or comfort is one of their most important roles when providing care to critically ill patients. Patients and family members also perceived physical care and/or comfort as one of the priority needs of critically ill individuals in the ICU. The descriptors for the theme physical care are bathing the patient, rendering oral care, treating the pain and encouraging touch. One nurse (Nurse Number 3) verbalised about providing comfort to patients and stated: ‘‘In ICU we get all kinds of patients, all kinds of diagnosis. Pain is pretty much a very common problem among these patients. Even an intubated patient can be in pain. Nurses should be able to assess them well for they are unable to verbalize. Patients should be comfortable and not need to suffer of pain.’’
Physiological care The nurses, patients and family members participating in this study perceived physiological care as a basic and priority need of patients in the ICU. The acts of taking vital signs, giving medications and feeding the patient were identified as approaches and descriptors to providing physiological care to the critically ill. The patients spoke about how important nutrition was to them whilst being critically ill in the ICU. A patient (Patient Number 1) who had a haemorrhagic stroke articulated his feelings on this basic physiologic need and said: ‘‘The support of the family is important; small things like bringing soup or food from home. We all know that food in the hospital is not so good. If we don’t eat, we won’t get better. The nurse should be understanding and allow
The lived ICU experience of nurses, patients and family members the family to do this. Instructions can be given to the family member on diet restrictions.’’
Family as a unit Family, as a unit, was a significant finding noted amongst all the participants. The nurses interviewed for this study perceived the patients and their families as one unit. Consequently, patients and family members viewed the nurse as part of the family. This finding from the patients and family members that regards the nurse as part of the family is new that this researcher can contribute to the vast body of literature on lived ICU experience. A daughter of one patient who had a cholecystectomy and respiratory failure in the ICU said: ‘‘With the nurses, they were all like part of our family because they were so caring, making sure that us as the family we knew what was going on. We don’t look at them as nurses. It became like you know them and they’re like part of you every day.’’ The descriptors for the theme family as a unit are: involve the family in the plan of care or be an active participant, allow the family to bring pictures of the patient, and, empathise with the family. A 43 year old patient (Patient Number 2) who had multiple admissions in the ICU related to uncontrolled diabetes reflected on the importance of family and stated: ‘‘Having a family in ICU is a great feeling and helps you get better faster. You get stressed out and stress is part of high ‘‘sugar.’’ When the family is there they make you calm and make you feel better. The love of your family makes you feel better. Having my family there means a lot.. some people don’t have family.’’
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presented unique ways of transformation. One meaningful descriptor for the theme transformation illuminated from the nurses of this study was ‘‘the realisation that good patient care equals family satisfaction thus their own personal satisfaction.’’ One nurse (Nurse Number 5) spoke about satisfaction in the following terms: ‘‘Personal and family satisfaction is important because the patients here in ICU get good care. I’m satisfied with the care so patients are also satisfied then it follows that the family is satisfied. They are interrelated with each other. I feel fulfilled because I gave a care that’s satisfying.’’ The patients in this study perceived that the critical care experience was for them a ‘‘wake-up call.’’ One patient (Patient Number 4) summarised his feelings this way: ‘‘When I was in ICU and I saw my family visit, I feel different. Family is very important to me. All this is just a wake-up call because I’m here and my parents, nurses, doctors, you know seeing young people work here and having jobs and they still can go on with their day without having to worry about police or if I sell this, I’m going to get fast money. This life is simple.. my life could have just been in a second, in an instant taken from you.’’ Family members found that having a critically ill member of the family in the ICU was a trial in difficult times that strengthened their faith. The experience also made them emotionally empowered. This was evident in one patients’ daughter’s narrative: ‘‘Having a family member in the ICU, I have to be the stronger one in the family. I always have a smile and letting them know, reassuring them that things are going to be fine. . .you try to be strong for everybody else. . .So you want to reassure them. . .I have to hold everything together.’’
Psychosocial support The participants of this study identified that psychosocial support was provided through these descriptors: emotional support that includes encouragement, spiritual support, sensitivity to patient and family’s needs, treating the patient and family with respect, offering translation service and referring to social service. It was through communication that provision of psychosocial support was fulfilled. A nurse (Nurse Number 5) described her experience of providing emotional support to family members and said: ‘‘Emotional support is crucial. I try to reassure the family on a lot of things. I reassure them that the ‘‘tube’’ in the mouth is not permanent there and once the patient is ready to breathe on their own, the patient is going to be weaned from the ‘‘machine.’’ By doing that, it will help lessen their anxiety, because they are not familiar with all the ‘‘tubes’’ that the patient have.’’
Transformation Transformation was a theme illuminated in this study. Processes of transformation were noted within the three categories of participants. Each category of participants
Specific themes Nurse-specific theme: advocacy Nurses in this study perceived advocacy as one important aspect of their role in providing holistic care to the critically ill and their family members. Nurses advocated for the patient and family members by: working with family for the patient’s well-being, advocating for privacy and confidentiality, advocating for the patient on ethical issues that include Do Not Resuscitate (DNR), healthcare proxy, living wills and advanced directives and offering information to patient and family regarding present condition, procedures, treatment, equipments and invasive lines, what to expect and prognosis and telephone numbers.
Patient-specific theme: uncertainty This study found that critically ill patients in the ICU experienced an overwhelming feeling of uncertainty related to outcomes. Uncertainty is a patient-specific theme illuminated in this study. One patient (Patient Number 1) spoke of his perception in the following terms:
278 ‘‘When I was in ICU, I had this funny feeling of both scared and worried. I was awake and I understood everything but my speech was not so good. I always thought, ‘what if I won’t make it,’’ or ‘‘will my condition get better or not,’’ ‘‘am I at all progressing or not?’’ It was really a scary feeling.’’
Family member-specific theme: confidence in the nurse and the health care team It was identified that the family members who were participants in this study, have confidence in the care that the nurse and the healthcare team in the care provided to the critically ill patients. The nurse offered information to patients and family members regarding present condition, procedures, treatment, equipments and invasive lines, what to expect and prognosis and telephone numbers. A patient’s husband (Family Member Number 2) summarised his perception of confidence in the nurse and the health care team this way: ‘‘I was very pleased with the care in ICU because when I brought my wife to the hospital she was in pretty bad shape, but they worked tirelessly. They were very good. She got good care there. They all worked together to do what they had to do. In my own thinking, the nurses’ roles are the care giving and taking care of what they were trained to do.’’
Discussion Four common themes and three specific themes were illuminated from this study, which will be discussed in the context of Merleau-Ponty’s (1945, 1962a,b,c) existentials of corporeality (embodiment), relationality, spatiality and temporality. In the phenomenological literature, these four categories have been considered as belonging to the fundamental structure of the lifeworld; the world of lived experience in which human beings experience the world but not in the same modality. Corporeality, spatiality, relationality and temporality are productive categories for the process of phenomenological question posing, reflecting and writing (van Manen, 1990, p. 102). Merleau-Ponty (1945/1962a,b,c) emphasised the sacredness of the body and explained that when the relationship between body and world is disturbed (i.e., when bodily capacities is changed related to critical illness), a person’s existence is shaken. A change in the body and in physical and perceptual possibility transforms subjectivity itself. In this study, patient’s embodiment is threatened by critical illness that has effects and meanings on their lifeworld and lived experience. Critical illness is a life-threatening disease or state in which death is possible or imminent affecting both the patient and family members. A patient who is confined to bed and on extensive monitoring, often experiences discomforts that include pain. Sounds and lights from equipments in the ICU affect sleep, sensory and perceptual deprivation, and overload. Critical illness is also a state of ‘‘inability’’ on the patient’s part. Patients who were mechanically ventilated talked about the inability to do certain things, perform particular roles, engage in certain
B.S. Cypress activities, manifests uncertainty, anxiety, panic, discomfort, loss of communication, insecurity, time disorientation and altered self-image. The patient’s family members are also overwhelmed with feelings of fear, anxiety and stress. Critical illness may also lead to changes in the patient’s support systems. Study participants perceived that physical care and or comfort, coupled with physiological care are vital during critical illness in the ICU. The patient’s experiences as it relates to finding meaning during critical illness also centred on obtaining support from their families and professionalism from the nurse. The ICU experience amongst all the participants is interdependence. Interdependence was promoted by providing psychosocial support to the patients and family members. The patients, their family members and nurses are one or intertwined. Nurses perceived the patients and family members as a unit, and consequently, patients and family members considered the nurse as part of the family (family as a unit).The theme family as unit and psychosocial support are related to Merleau-Ponty’s (1945, 1962a,b,c) concept of relationality. Relationality refers to the world we find ourselves in relation to others. Merleau-Ponty believed in the benefits of connecting and relating with other people and saw the potential for dialogue, through which persons receive recognition and affirmation. Life is spent in a ‘‘knot’’ or network of relations. He did not see others as impediments but rather as fellow travellers in life’s journey. In this study, lived relation during the ICU experience was with their critically ill loved one, with each other, with nurses, physicians and other healthcare staff, and with others who supported them. There is an implicit connection between the physicians, nurses, family members and the health care staff and the ICU works as a whole because of this interdependence. To achieve relational integrity and effective adaptation during critical illness, patients have to interact with the nurse, family members and significant others for care, support and security. ICU nurses are positioned to focus on caring for the patient. To provide holistic care however, caring cannot be directed exclusively to the patient, especially in the context of critical illness. Care of the patient and family become intertwined in that what affects one member potentially impacts the entire family (Pryzby, 2005). Thus, the hospitalisation of a family member has an impact on the whole family system’s equilibrium. To be able to help the family function in crisis related to critical illness, the nurse needs to promote adaptation and emotional stability. Critical illness is usually characterised by an acute incident that can be triggered by co-morbidities that can lead to multiple admissions related to exacerbations and ultimately chronicity. Patients are sometimes admitted in the ICU multiple times. Overtime, the critically ill patients either are unable to cope with their illnesses or are able to make sense of their illness experiences and create meaning schemes. According to Merleau-Ponty (1945, 1962a,b,c), our embodied bodies occupy a space and that space is located in time (temporality). It is our situatedness in the world that enables our reflection upon a past present and gives a sense of past and future as parts of a bodily life. This existential skill of situatedness and dwelling in their lifeworld enables the person to experience life as meaningful even in the face of illness (i.e., critical illness). Finding meaning in spite
The lived ICU experience of nurses, patients and family members of critical illness was reflected in the theme transformation. These processes of transformation were noted amongst the patients, their family members and the nurses. Each category of participants presented unique ways of transformation. As reflected in their descriptions, patients experienced uncertainty during critical illness in the ICU but family members did not. Uncertainty is a cognitive state in which a person is unable to determine the meaning of illness-related events, assign definite values to objects and events, and/or accurately predict outcomes. Uncertainty is a major component of the illness experience that can be seen throughout the process of diagnosis, treatment and prognosis and dramatically affects psychosocial adaptation and outcomes of disease states. When a person does not have sufficient clues to structure or categorise an event (i.e., critical illness), uncertainty arises (Mishel, 1988). The patient’s perception of uncertainty can be described using Merleau-Ponty’s concept of spatiality. Spatiality or lived space is felt space (van Manen, 1990). In this phenomenological study, the patient’s lived space is the intensive care unit. The critically ill patients, in a high-technology environment as the ICU, experience a threat to their lived space. The ICU is not the patient’s usual environment. During critical illness, lack of familiarity with the ICU environment, new staff and procedures can create uncertainty regarding events. The complexity of cues can be related to information regarding the diagnosis, findings from multiple tests, invasive procedures, possible risks and efficacy of treatments and its risks, and prognosis. In contrast with the findings from the studies reviewed from the literature that family members exhibit feelings of uncertainty during critical illness of a family member, this research identified that through communication with the nurse and other members of the healthcare team, and having the nurse advocate for them, the family members did not manifest feelings of uncertainty in any aspects of care provided to their critically ill loved one. Family members’ experiences in the ICU empowered them emotionally and also strengthened their faith. This study identified that the family members who were participants had confidence in the nurse and the healthcare team in the care that they provide to the critically ill patients. Nurse advocacy and psychosocial support also helped family members as well as patients deal with the experience of critical illness. Communication was identified as the precursor for providing psychosocial support. Some limitations of the study are noted. The small sample size may not have been the representative of the ICU patient population. The results cannot be generalised to a broader population specifically all ICU settings as this is not the goal of qualitative research. Instead, the findings can be applied to similar situations if the result is modified to comply with the context. There was also no attempt to differentiate responses on the basis of age and gender on all participants. Of the patients, the severity of illness or admitting diagnosis, duration of ICU stay was also not considered. The nurses’ length of critical care experience and total nursing experience was also not differentiated from the responses. It may well be that findings of this study would vary in such subgroups. The time frame for the interviews also differed between
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the participants and this fact could have influenced the results.
Implications and recommendations Family-centred care is important for people of all ages because of the role that a family plays in establishing and maintaining health (Johnson et al., 1995). Meeting the needs of family members helps reduce anxiety, build family confidence in the healthcare system, and ultimately improves health outcomes (Maxwell et al., 2007). On an institutional level, understanding patients’ and families’ experiences can provide a foundation for improving nursing services. When planning family-centred interventions in a critical care environment, nurses can influence family members and meet their needs even with the tension of acute care. This study affirms the need for nursing interventions that acknowledge and include the family in the critical illness experience. Flexible or open visiting is one intervention for meeting the needs of family members. According to Miracle (2006), this concept has been heavily studied and recommended by several researchers, authors and professional organisations. However, the practice of flexible or open visitation is not as widespread as many had hoped. The American Association of Critical Care Nurses (AACN) recently conducted a survey of critical care units in the United States and found that 31% have open visiting, except during rounds or shift changes, with only 14% having true open visiting. This study recommends that a clear and thorough institutional policy on visiting hours should be developed and instituted, especially in specialty units such as the ICU. The criteria for flexible or open visiting should be delineated. Open visiting in the adult intensive care environment allows flexibility for patients and families, and could be determined on a case-by-case basis. Family presence during resuscitation and invasive procedures is another controversial issue in critical care. Family presence is defined as the attendance of family members in a place where they can see or touch the patient during invasive procedures or cardiopulmonary resuscitation (Meyers et al., 2000). Hupcey (1998) found that family presence in the ICU helped instil hope, a sense of control, trust in providers and the opportunity to have gaps in knowledge filled-in, all resulting in helping the patient to feel safe whilst in the ICU. This study recommends that family members be allowed during resuscitation and invasive procedures in the ICU, as long as it is within the policy and procedure that the institution establishes. In this study, the interdependence of nurses, patients and family members, family as a unit and psychosocial support is related to the concept of family presence. Based on this study, this researcher recommends family inclusion and participation in daily rounds as highly beneficial. The burden imposed by the challenges related to privacy and teaching of the resident teams is outweighed by the greater benefit of improving bi-directional communication between families and the healthcare team (Davidson et al., 2007). A formal interdisciplinary conference can be used to discuss patient care goals and discharge planning (if applicable) with the family in the conference room on the unit. Criteria for the conference may be family request, patients who are mechanically ventilated for more than
280 three days, complicated cases in which the patients resuscitation status is in question, and those with poor prognosis and are terminally ill. This phenomenological study should be replicated with a larger number of participants in different patient populations. Although results of qualitative studies should not be generalised to broader populations, the researcher believes that the knowledge gained from this study may be of benefit to nursing practice, education and future research. This study affirms the need for nursing interventions that acknowledge and include the family in the critical illness experience and supports the tenets of family-centred care, which mandates the purposeful inclusion of the family in all aspects of care.
Conclusion Using phenomenology, Merleau-Ponty’s philosophical perspective and van Manen’s method of phenomenological research this study shed light on the phenomenon of the intensive care unit experience during critical illness in the ICU from the perspectives of patients, their family members, and the nurses. Understanding the person’s lived body and the notion that the experience of critical illness is dependent on the individual’s embodied temporal, spatial and relational horizons, rather than only the naturalistic, biological and physiological aspects, revealed new conception of critical illness that will provide caregivers knowledge about effective care. A better understanding and description of these experiences was revealed towards a more holistic, subjective consideration of the person’s narrative and life world which opens new ways for coping amongst patients and their families, as well as care giving possibilities for the nurses. The patient’s experiences as it relates to finding meaning during critical illness, centred on obtaining support from their families and professionalism from the nurse. Adaptation in the ICU, as experienced by nurses, patients and family members integrates family as a unit, physical care/comfort, physiological care and psychosocial support resulting in transformation.
Source of funding This study was funded by the 2009 American Association of Critical Care Nurses (AACN) Phillips Medical Systems Outcomes for Excellence Research Grant and the Teachers College Columbia University Nursing Education Alumni Association (NEAA) Pre-Doctoral Research Award.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at doi:10.1016/ j.iccn.2011.08.001.
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B.S. Cypress Creswell JW. Qualitative inquiry and research design: choosing among five approaches. 2nd ed. Thousand Oaks, CA: Sage; 2007. Cypress. The intensive care unit: experiences of patients, families and their nurses. Dimens Crit Care Nurs 2010;29:94—101. Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, Shepard E, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004—2005. Crit Care Med 2007;35:605—22. Eggenberger SK, Nelms TP. Being family: the family experience when an adult member is hospitalized with a critical illness. J Clin Nurs 2007;16:1618—28. Henneman EA, Cardin S. Family-centered critical care: a practical approach to making it happen. Crit Care Nurs 2002;22: 12—9. Hupcey JE. Establishing the nurse—patient relationship in the intensive care unit Western. J Nurs Res 1998;20:180—94. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press; 2001. Johnson SK, Craft M, Titler M, Halm M, Kleiber C, Montgomery LA, et al. Perceived changes in adult family members’ roles and responsibilities during critical illness. Nurs Scholars 1995;27:238—43. Kosco M, Warren NA. Critical care nurses’ perceptions of family needs as met. Crit Care Nurs Q 2000;23:60—72. Lincoln Y, Guba E. Naturalistic enquiry. Newbury Park, CA: Sage Publications; 1985. Maxwell KE, Stuenkel D, Saylor C. Needs of family members of critically ill patients: a comparison of nurse and family perceptions. Heart Lung 2007;36:367—76. Merleau-Ponty M. Phenomenology of perception (C. Smith, Trans.). London: Routledge & Kegan Paul; 1945/1962a. Merleau-Ponty M. Phenomenology of perception. New York: Humanities Press; 1945/1962b. Merleau-Ponty M. The primacy of perception (J. Edie, Trans.). Evanston, IL: Northwestern University Press; 1945/1962c. Miracle VA. Strategies to meet the needs of families of critically ill patients. Dimens Crit Care Nurs 2006;25:121—5. Mishel M. Uncertainty in illness. Image J Nurs Sch 1988;20:227—31. Meyers TA, Eichorn DJ, Guzzetta CE, Clark AP, Klein JD, Taliafero E, Calvin A. Family presence during invasive procedures and resuscitation: the experience of family members, nurses, and physicians. Am J Nurs 2000;100:32—42. Pryzby B. Effects of nurse caring behaviors on family stress responses in critical care. Intensive Crit Care Nurs 2005;21:16—23. Reider JA. Anxiety during critical illness of a family member. Dimens Crit Care Nurs 1994;13:272—9. Streubert HJ, Carpenter DR. Qualitative research in nursing: Advancing the humanistic imperative. 3rd ed. Philadelphia, PA: Lippincott Williams & Wilkins; 1999. Tracy J, Fowler S, Magarelli K. Hope and anxiety of individual family members of critically ill adults. Appl Nurs Res 1999;12:121—7. The Joint Commission on Accreditation of Healthcare Organizations, 2006. The Joint Commission Announces the 2007, National Patient Safety Goals and Requirements. Jt Comm Perspect., 26 1-31. Van der Zalm JE, Bergum V. Hermeneutic-phenomenology: providing living knowledge for nursing practice. J Adv Nurs 2000;31:211—8. Van Horn E, Tesh A. The effect of critical care hospitalisation on family members: stress and responses. Dimens Crit Care Nurs 2000;19:40—9. van Manen M. Researching lived experience: human science for an action sensitive pedagogy. Albany, NY: State University Press; 1990. Williams CMA. The identification of family members’ contribution to patients’ care in the intensive care unit: a naturalistic enquiry. Nurs Crit Care 2005;10:6—14.
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ORIGINAL ARTICLE
The lived ICU experience of nurses, patients and family members: A phenomenological study with Merleau-Pontian perspective Brigitte S. Cypress ∗ Lehman College, City University of New York, United States Accepted 6 August 2011
KEYWORDS Phenomenology; Qualitative research; Intensive care unit
Summary Aim: To describe and understand the lived intensive care unit experience of nurses, patients and family members during critical illness. Background: There is a paucity of research studies in the literature conducted on the triad of nurses, patients and family members looking at the experience of critical illness and their perspective of each, from the other. Methodology: A phenomenological approach and Merleau-Ponty’s existentials of corporeality, temporality, relationality and spatiality was used for this study. In-depth, open-ended interviews were, conducted and analysed using van Manen’s wholistic, selective and detailed line-by-line approach. Results: Five common themes (a) and three specific themes (b) emerged from the data: (a) family as a, unit, physical care/comfort, physiological care, psychosocial support and transformation; and, (b) advocacy, uncertainty and confidence in the nurse and the healthcare team. Conclusion: Examining embodied experience of corporeality, temporality, spatiality and relationality, opens new ways for coping amongst patients and their families, as well as care giving possibilities for the, nurses. This study affirms the mutual influence amongst the family, patient and nurses during a critical, illness experience and supports the tenets of family-centred care, which mandates the purposeful, inclusion of the family in all aspects of their loved one’s care. © 2011 Elsevier Ltd. All rights reserved.
Introduction and background
∗ Correspondence address: P.O. Box 2205, Pocono Summit, PA 18346, United States. Tel.: +1 718 960 8373; fax: +1 718 960 8488. E-mail addresses: [email protected], [email protected]
Critical illness and the unplanned admission of a family member to an intensive care unit (ICU) is an extremely stressful experience (Williams, 2005) that can result in a number of physiological and psychological problems, not only for the patient, but also for family members (Chiu et al., 2004). The admission of a family member to an ICU may
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274 result in an emotional turmoil, role conflict, a high level of stress, interruption of normal home routines and potential changes in relationships amongst family members (Reider, 1994). Van Horn and Tesh (2000) stated that, ‘‘Family members of ICU patients may experience stressors that threaten both personal health and family integrity. Family members endure multiple concurrent stressors and exhibit numerous behavioural responses including changes in eating, sleeping, activity, family roles and responsibilities’’ (p. 40). Family emotions may then positively or negatively impact patient responses and recovery (Tracy et al., 1999). Highly technical equipment used to treat patients and complicated disease conditions in the ICU can become barriers that interfere with patient—family communications. Understanding the nurse—family relationships in ICU is extremely important especially if a family—patient relationship is compromised by the patient’s physiologic state (Maxwell et al., 2007). Nurses need to understand the family’s experiences and identify families’ needs associated with hospitalisation of critically ill family members in order to help them cope with this catastrophic event in their lives. The role that the family actually plays in the ICU may depend on the interactions and the types of relationships that develop between the nurses and the family of the critically ill patient associated with hospitalisation of their critically ill member. This knowledge is essential to optimise the family’s well-being and coping, so they can provide appropriate and effective support to their critically ill member (Kosco and Warren, 2000). Recognition of family needs and including them in patient care can lead to improved patient outcomes (Miracle, 2006). Cypress (2010) in her study, found that nurses, patients and family members are intertwined or one unit (family as a unit). A family-focused unit views a patient’s family as the unit to be cared for and organises care delivery around the patient’s family, as opposed to the more traditional patient-centred model (Henneman and Cardin, 2002). As emphasised by Institute of Medicine (2001), one dimension of patient-centred care is the accommodation of family and friends on whom patients may rely. This includes involving them in appropriate decision-making, supporting them as caregivers, making them welcome and comfortable in the care delivery setting, and recognising their needs and contributions and improving their access to information. The importance of involving patients and families in care and decision-making has been highlighted by numerous other groups, including the Joint Commission, who cited patient involvement as a holistic approach, a key safety strategy and a patient safety goal for 2007. (The Joint Commission on Accreditation of Healthcare Organizations, 2006). The phenomenological method, which examines subjective human experience, is commonly used in answering questions that are foundational to sound nursing science. It is also one that values individuals and the nurse—patient relationship, and one which embraces a holistic approach to the person (Van der Zalm and Bergum, 2000). Phenomenology as the method for this study aimed at describing the phenomenon of the experience of nurses, patients and family members during critical illness in the ICU as they present themselves in lived experience. Understanding the lived experience of the participants will help describe their lifeworld as real, meaningful and as experienced.
B.S. Cypress Merleau-Ponty’s (1964a,b,c) existentials was also used to describe the findings of the study because it is foundational in understanding embodied knowledge. In this study, patient’s embodiment (corporeality) is threatened by critical illness that has effects and meanings on their lifeworld, lived relation (relationality), lived space (spatiality) and lived time (temporality).
Methodology Research questions and objectives There is a paucity of research studies in the literature conducted on the triad of nurses, patients and family members looking at the experience of critical illness and their perspective of each from the other. The literature search conducted from 1998 to 2007 did not yield studies conducted on this triad. The majority of the studies related to critical illness and the families are also quantitative with a focus on selected areas of concern and/or selected individuals in the family (Eggenberger and Nelms, 2007). The purpose of this study was to describe and understand the lived ICU experience of nurses, patients and family members during critical illness using van Manen’s method of phenomenological research. The themes will be discussed in the context of Merleau-Ponty’s existentials of corporeality, relationality, spatiality and temporality. The research questions that guided this study were: (1) what are the patients’ and their families’ experiences of the nurse in an intensive care unit environment? (2) what are the nurses’ experiences of the patients and families in an intensive care unit environment?
Study design, sample, setting and ethical approval van Manen’s (1990) method of phenomenological research was used to describe and understand the lived intensive care unit experiences of the 15 participants during critical illness. A purposive method of sampling was also used to recruit participants for this study in which they were selected for their knowledge and experience of critical illness in the ICU. The nurses providing direct care in the ICU, patients and family members were provided with a brief written introduction to the study that describes all the information such as purpose, inclusion criteria, consent, total time needed to participate, remuneration and right to terminate participation at any point during the study. Potential participants were approached individually if they were willing to participate in the study. Participants were also asked to fully read the informed consent form, encouraged to ask questions and to sign prior to their participation in the study. Eligible participants included five nurses, five patients and five family members who voluntarily signed an informed consent. Tables 1—3 describe the demographic data of the participants. Recruitment continued until data saturation was achieved. No participants approached refused to be included in the study. No participants dropped-out from the study. Ethical approval was obtained from the institutional review board of the hospital where the study took place.
The lived ICU experience of nurses, patients and family members Table 1
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Nurse participants’ demographic data.
Participant number
Age
Gender
Educational level
Years of nursing experience
Years of intensive care unit experience
1 2 3 4 5
40 38 36 52 50
Female Male Female Female Female
MSN BSN BSN MSN BSN
17 7 3 25 20
15 5 2 20 18
Table 2
Patient participants’ demographic data.
Participant number
Age
Gender
Diagnosis
1 2 3 4 5
61 43 55 23 70
Male Male Male Male Female
Haemorrhagic stroke Diabetic ketoacidosis Asthma, emphysema, respiratory failure Multiple gunshot wounds Exacerbation of congestive heart failure
Table 3
Family members participant’s demographic data.
Participant Number
Age
Gender
Relationship to critically ill patient
1 2 3 4 5
62 70 45 38 60
Female Male Female Female Female
Wife Husband Mother Father Husband
This study was conducted in an adult ICU in an urban, nonprofit, nonsectarian community hospital.
Data Collection and procedure The data were collected over five to six months during the year 2008. Data collection for the patients and family member participants consisted of two one-hour unstructured or open-ended interview audio taped interviews that took place in a quiet, private room on the medical—surgical floors where the patients were transferred. The nurses were interviewed in different venues of their choice ensuring privacy and confidentiality. The second interview was conducted four days after the first interview. The interview for nurses was started with a general lead question — ‘‘Tell me about your experience of the patients and family members in the ICU.’’ The patients and family member’s interviews commenced with an open-ended question — ‘‘Tell me about your experience of the nurse in the ICU.’’ These questions put the interview in a context for both the researcher and the participant. All participants participated in the two interviews. Participants were enrolled until new information was no longer forthcoming, data saturation was achieved, and existing narratives were adequate in describing the phenomenon of the ICU experiences of patients, their family members and the nurses during critical illness. Repetition and confirmation of previously collected data that also include salient
points or themes were noted as the interview of each participant went on within a specific category. The researcher was able to recognise the repetition and determined that each category confirmed her findings rather than added new information. This repetition of themes signifies the completion of data collection for the phenomenon of this study. Audiotapes were transcribed verbatim by a professional transcriptionist after the interviews. Field notes were kept during the interviews and a reflective journal was also maintained during the research process. No pilot testing was done in this research.
Data analysis When data collection begins in qualitative research, so, too, data analysis. From the moment researchers begin listening to descriptions of a particular phenomenon, analysis is occurring (Streubert and Carpenter, 1999). Thematic analysis was further accomplished using van Manen’s (1990) wholistic, selective and detailed line-by-line approach. Following van Manen’s technique, the researcher listened to the tapes whilst reading the transcriptions for accuracy. Reading and re-reading of verbatim transcriptions or written responses of participants was also carried out. Each transcript was read in its entirety at least three times. The text was first attended as a whole (wholistic). Statements that illuminated the meaning of the ICU experience
276 of participants were highlighted and underlined (selective). These sentences were thematic sentences reflective of the participant’s experience. To have a better understanding of the participant’s perception of their ICU experience, a detailed reading approach was used. Every single sentence or sentence clusters in each interview was carefully analysed (detailed line-by-line). The aim is to further find revelations about the experience. Coding of narrative statements and interpretive summaries helped in identification of themes that emerged from the data. Responses from the three categories of participants were noted to be interrelated and integrating. Repetition of themes from and across each category was evident. Triangulation of the data from the three categories of participants yielded five integrating common themes and three specific themes. To be able to validate the findings related to themes, a doctoral-prepared nursing colleague and mentor who is an expert in qualitative research was asked to review the transcribed material. The researcher met with the mentor monthly for 6 months to code, reflect, review and analyse the transcripts until specific themes were illuminated and defined.
Methodological rigour and trustworthiness Reliability and validity are conceptualised as trustworthiness, rigour and quality in qualitative paradigm. Trustworthiness was estimated through the use of the criteria of dependability, credibility, reliability and validity (Creswell, 2007; Lincoln and Guba, 1985). The trustworthiness of the results of this study is enhanced by the detailed and accurate descriptions of the patients, their family members, and the nurses’ experiences and by continuously returning to the texts. Reliability was attained by giving special care to the collection, identification and analysis of all data pertinent to the study. The collected and analysed data were presented to the participants and they were asked if the narrative is accurate and a true reflection of their experience and in order to achieve credibility. The participants were given the opportunity to review, correct or modify the transcribed data. Credibility, the accurate and truthful depiction of participants’ lived experience, was achieved through prolonged engagement. The researcher spent 5—6 months with nurses, patients and their families in the ICU to learn the context of the phenomena and become oriented to the situation and to build trust and rapport with the participants. Dependability was achieved by having a doctorally prepared nursing colleague review the transcribed material to validate the themes and descriptors identified. Through reflexivity and bracketing, the researcher was always on guard of her own biases and assumptions that she might bring to the study but was also aware that complete reduction is not possible (Merleau-Ponty, 1962a,b,c).
Findings Five common themes, three specific themes and corresponding descriptors emerged from the thematic analysis of the participant’s narratives and are described below with a description of the theme and its illustrations in supporting quotes. The quotes used were selected because they provided a clear illustration of a characteristic of the theme.
B.S. Cypress PATIENTS Uncertainty
Common Themes Physical Care/Comfort NURSES
Physiological Care
Advocacy
Family as a Unit Psychosocial Support:
FAMILY MEMBERS Confidence in the nurse and healthcare team
(Communication) Transformation
Figure 1
Themes.
Each participant was assigned an identification number to ensure anonymity. Fig. 1 illustrates these themes.
Common themes Physical care and/or comfort The nurse participants in this study found that because of the inability caused by the patient’s critical condition, providing physical care and/or comfort is one of their most important roles when providing care to critically ill patients. Patients and family members also perceived physical care and/or comfort as one of the priority needs of critically ill individuals in the ICU. The descriptors for the theme physical care are bathing the patient, rendering oral care, treating the pain and encouraging touch. One nurse (Nurse Number 3) verbalised about providing comfort to patients and stated: ‘‘In ICU we get all kinds of patients, all kinds of diagnosis. Pain is pretty much a very common problem among these patients. Even an intubated patient can be in pain. Nurses should be able to assess them well for they are unable to verbalize. Patients should be comfortable and not need to suffer of pain.’’
Physiological care The nurses, patients and family members participating in this study perceived physiological care as a basic and priority need of patients in the ICU. The acts of taking vital signs, giving medications and feeding the patient were identified as approaches and descriptors to providing physiological care to the critically ill. The patients spoke about how important nutrition was to them whilst being critically ill in the ICU. A patient (Patient Number 1) who had a haemorrhagic stroke articulated his feelings on this basic physiologic need and said: ‘‘The support of the family is important; small things like bringing soup or food from home. We all know that food in the hospital is not so good. If we don’t eat, we won’t get better. The nurse should be understanding and allow
The lived ICU experience of nurses, patients and family members the family to do this. Instructions can be given to the family member on diet restrictions.’’
Family as a unit Family, as a unit, was a significant finding noted amongst all the participants. The nurses interviewed for this study perceived the patients and their families as one unit. Consequently, patients and family members viewed the nurse as part of the family. This finding from the patients and family members that regards the nurse as part of the family is new that this researcher can contribute to the vast body of literature on lived ICU experience. A daughter of one patient who had a cholecystectomy and respiratory failure in the ICU said: ‘‘With the nurses, they were all like part of our family because they were so caring, making sure that us as the family we knew what was going on. We don’t look at them as nurses. It became like you know them and they’re like part of you every day.’’ The descriptors for the theme family as a unit are: involve the family in the plan of care or be an active participant, allow the family to bring pictures of the patient, and, empathise with the family. A 43 year old patient (Patient Number 2) who had multiple admissions in the ICU related to uncontrolled diabetes reflected on the importance of family and stated: ‘‘Having a family in ICU is a great feeling and helps you get better faster. You get stressed out and stress is part of high ‘‘sugar.’’ When the family is there they make you calm and make you feel better. The love of your family makes you feel better. Having my family there means a lot.. some people don’t have family.’’
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presented unique ways of transformation. One meaningful descriptor for the theme transformation illuminated from the nurses of this study was ‘‘the realisation that good patient care equals family satisfaction thus their own personal satisfaction.’’ One nurse (Nurse Number 5) spoke about satisfaction in the following terms: ‘‘Personal and family satisfaction is important because the patients here in ICU get good care. I’m satisfied with the care so patients are also satisfied then it follows that the family is satisfied. They are interrelated with each other. I feel fulfilled because I gave a care that’s satisfying.’’ The patients in this study perceived that the critical care experience was for them a ‘‘wake-up call.’’ One patient (Patient Number 4) summarised his feelings this way: ‘‘When I was in ICU and I saw my family visit, I feel different. Family is very important to me. All this is just a wake-up call because I’m here and my parents, nurses, doctors, you know seeing young people work here and having jobs and they still can go on with their day without having to worry about police or if I sell this, I’m going to get fast money. This life is simple.. my life could have just been in a second, in an instant taken from you.’’ Family members found that having a critically ill member of the family in the ICU was a trial in difficult times that strengthened their faith. The experience also made them emotionally empowered. This was evident in one patients’ daughter’s narrative: ‘‘Having a family member in the ICU, I have to be the stronger one in the family. I always have a smile and letting them know, reassuring them that things are going to be fine. . .you try to be strong for everybody else. . .So you want to reassure them. . .I have to hold everything together.’’
Psychosocial support The participants of this study identified that psychosocial support was provided through these descriptors: emotional support that includes encouragement, spiritual support, sensitivity to patient and family’s needs, treating the patient and family with respect, offering translation service and referring to social service. It was through communication that provision of psychosocial support was fulfilled. A nurse (Nurse Number 5) described her experience of providing emotional support to family members and said: ‘‘Emotional support is crucial. I try to reassure the family on a lot of things. I reassure them that the ‘‘tube’’ in the mouth is not permanent there and once the patient is ready to breathe on their own, the patient is going to be weaned from the ‘‘machine.’’ By doing that, it will help lessen their anxiety, because they are not familiar with all the ‘‘tubes’’ that the patient have.’’
Transformation Transformation was a theme illuminated in this study. Processes of transformation were noted within the three categories of participants. Each category of participants
Specific themes Nurse-specific theme: advocacy Nurses in this study perceived advocacy as one important aspect of their role in providing holistic care to the critically ill and their family members. Nurses advocated for the patient and family members by: working with family for the patient’s well-being, advocating for privacy and confidentiality, advocating for the patient on ethical issues that include Do Not Resuscitate (DNR), healthcare proxy, living wills and advanced directives and offering information to patient and family regarding present condition, procedures, treatment, equipments and invasive lines, what to expect and prognosis and telephone numbers.
Patient-specific theme: uncertainty This study found that critically ill patients in the ICU experienced an overwhelming feeling of uncertainty related to outcomes. Uncertainty is a patient-specific theme illuminated in this study. One patient (Patient Number 1) spoke of his perception in the following terms:
278 ‘‘When I was in ICU, I had this funny feeling of both scared and worried. I was awake and I understood everything but my speech was not so good. I always thought, ‘what if I won’t make it,’’ or ‘‘will my condition get better or not,’’ ‘‘am I at all progressing or not?’’ It was really a scary feeling.’’
Family member-specific theme: confidence in the nurse and the health care team It was identified that the family members who were participants in this study, have confidence in the care that the nurse and the healthcare team in the care provided to the critically ill patients. The nurse offered information to patients and family members regarding present condition, procedures, treatment, equipments and invasive lines, what to expect and prognosis and telephone numbers. A patient’s husband (Family Member Number 2) summarised his perception of confidence in the nurse and the health care team this way: ‘‘I was very pleased with the care in ICU because when I brought my wife to the hospital she was in pretty bad shape, but they worked tirelessly. They were very good. She got good care there. They all worked together to do what they had to do. In my own thinking, the nurses’ roles are the care giving and taking care of what they were trained to do.’’
Discussion Four common themes and three specific themes were illuminated from this study, which will be discussed in the context of Merleau-Ponty’s (1945, 1962a,b,c) existentials of corporeality (embodiment), relationality, spatiality and temporality. In the phenomenological literature, these four categories have been considered as belonging to the fundamental structure of the lifeworld; the world of lived experience in which human beings experience the world but not in the same modality. Corporeality, spatiality, relationality and temporality are productive categories for the process of phenomenological question posing, reflecting and writing (van Manen, 1990, p. 102). Merleau-Ponty (1945/1962a,b,c) emphasised the sacredness of the body and explained that when the relationship between body and world is disturbed (i.e., when bodily capacities is changed related to critical illness), a person’s existence is shaken. A change in the body and in physical and perceptual possibility transforms subjectivity itself. In this study, patient’s embodiment is threatened by critical illness that has effects and meanings on their lifeworld and lived experience. Critical illness is a life-threatening disease or state in which death is possible or imminent affecting both the patient and family members. A patient who is confined to bed and on extensive monitoring, often experiences discomforts that include pain. Sounds and lights from equipments in the ICU affect sleep, sensory and perceptual deprivation, and overload. Critical illness is also a state of ‘‘inability’’ on the patient’s part. Patients who were mechanically ventilated talked about the inability to do certain things, perform particular roles, engage in certain
B.S. Cypress activities, manifests uncertainty, anxiety, panic, discomfort, loss of communication, insecurity, time disorientation and altered self-image. The patient’s family members are also overwhelmed with feelings of fear, anxiety and stress. Critical illness may also lead to changes in the patient’s support systems. Study participants perceived that physical care and or comfort, coupled with physiological care are vital during critical illness in the ICU. The patient’s experiences as it relates to finding meaning during critical illness also centred on obtaining support from their families and professionalism from the nurse. The ICU experience amongst all the participants is interdependence. Interdependence was promoted by providing psychosocial support to the patients and family members. The patients, their family members and nurses are one or intertwined. Nurses perceived the patients and family members as a unit, and consequently, patients and family members considered the nurse as part of the family (family as a unit).The theme family as unit and psychosocial support are related to Merleau-Ponty’s (1945, 1962a,b,c) concept of relationality. Relationality refers to the world we find ourselves in relation to others. Merleau-Ponty believed in the benefits of connecting and relating with other people and saw the potential for dialogue, through which persons receive recognition and affirmation. Life is spent in a ‘‘knot’’ or network of relations. He did not see others as impediments but rather as fellow travellers in life’s journey. In this study, lived relation during the ICU experience was with their critically ill loved one, with each other, with nurses, physicians and other healthcare staff, and with others who supported them. There is an implicit connection between the physicians, nurses, family members and the health care staff and the ICU works as a whole because of this interdependence. To achieve relational integrity and effective adaptation during critical illness, patients have to interact with the nurse, family members and significant others for care, support and security. ICU nurses are positioned to focus on caring for the patient. To provide holistic care however, caring cannot be directed exclusively to the patient, especially in the context of critical illness. Care of the patient and family become intertwined in that what affects one member potentially impacts the entire family (Pryzby, 2005). Thus, the hospitalisation of a family member has an impact on the whole family system’s equilibrium. To be able to help the family function in crisis related to critical illness, the nurse needs to promote adaptation and emotional stability. Critical illness is usually characterised by an acute incident that can be triggered by co-morbidities that can lead to multiple admissions related to exacerbations and ultimately chronicity. Patients are sometimes admitted in the ICU multiple times. Overtime, the critically ill patients either are unable to cope with their illnesses or are able to make sense of their illness experiences and create meaning schemes. According to Merleau-Ponty (1945, 1962a,b,c), our embodied bodies occupy a space and that space is located in time (temporality). It is our situatedness in the world that enables our reflection upon a past present and gives a sense of past and future as parts of a bodily life. This existential skill of situatedness and dwelling in their lifeworld enables the person to experience life as meaningful even in the face of illness (i.e., critical illness). Finding meaning in spite
The lived ICU experience of nurses, patients and family members of critical illness was reflected in the theme transformation. These processes of transformation were noted amongst the patients, their family members and the nurses. Each category of participants presented unique ways of transformation. As reflected in their descriptions, patients experienced uncertainty during critical illness in the ICU but family members did not. Uncertainty is a cognitive state in which a person is unable to determine the meaning of illness-related events, assign definite values to objects and events, and/or accurately predict outcomes. Uncertainty is a major component of the illness experience that can be seen throughout the process of diagnosis, treatment and prognosis and dramatically affects psychosocial adaptation and outcomes of disease states. When a person does not have sufficient clues to structure or categorise an event (i.e., critical illness), uncertainty arises (Mishel, 1988). The patient’s perception of uncertainty can be described using Merleau-Ponty’s concept of spatiality. Spatiality or lived space is felt space (van Manen, 1990). In this phenomenological study, the patient’s lived space is the intensive care unit. The critically ill patients, in a high-technology environment as the ICU, experience a threat to their lived space. The ICU is not the patient’s usual environment. During critical illness, lack of familiarity with the ICU environment, new staff and procedures can create uncertainty regarding events. The complexity of cues can be related to information regarding the diagnosis, findings from multiple tests, invasive procedures, possible risks and efficacy of treatments and its risks, and prognosis. In contrast with the findings from the studies reviewed from the literature that family members exhibit feelings of uncertainty during critical illness of a family member, this research identified that through communication with the nurse and other members of the healthcare team, and having the nurse advocate for them, the family members did not manifest feelings of uncertainty in any aspects of care provided to their critically ill loved one. Family members’ experiences in the ICU empowered them emotionally and also strengthened their faith. This study identified that the family members who were participants had confidence in the nurse and the healthcare team in the care that they provide to the critically ill patients. Nurse advocacy and psychosocial support also helped family members as well as patients deal with the experience of critical illness. Communication was identified as the precursor for providing psychosocial support. Some limitations of the study are noted. The small sample size may not have been the representative of the ICU patient population. The results cannot be generalised to a broader population specifically all ICU settings as this is not the goal of qualitative research. Instead, the findings can be applied to similar situations if the result is modified to comply with the context. There was also no attempt to differentiate responses on the basis of age and gender on all participants. Of the patients, the severity of illness or admitting diagnosis, duration of ICU stay was also not considered. The nurses’ length of critical care experience and total nursing experience was also not differentiated from the responses. It may well be that findings of this study would vary in such subgroups. The time frame for the interviews also differed between
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the participants and this fact could have influenced the results.
Implications and recommendations Family-centred care is important for people of all ages because of the role that a family plays in establishing and maintaining health (Johnson et al., 1995). Meeting the needs of family members helps reduce anxiety, build family confidence in the healthcare system, and ultimately improves health outcomes (Maxwell et al., 2007). On an institutional level, understanding patients’ and families’ experiences can provide a foundation for improving nursing services. When planning family-centred interventions in a critical care environment, nurses can influence family members and meet their needs even with the tension of acute care. This study affirms the need for nursing interventions that acknowledge and include the family in the critical illness experience. Flexible or open visiting is one intervention for meeting the needs of family members. According to Miracle (2006), this concept has been heavily studied and recommended by several researchers, authors and professional organisations. However, the practice of flexible or open visitation is not as widespread as many had hoped. The American Association of Critical Care Nurses (AACN) recently conducted a survey of critical care units in the United States and found that 31% have open visiting, except during rounds or shift changes, with only 14% having true open visiting. This study recommends that a clear and thorough institutional policy on visiting hours should be developed and instituted, especially in specialty units such as the ICU. The criteria for flexible or open visiting should be delineated. Open visiting in the adult intensive care environment allows flexibility for patients and families, and could be determined on a case-by-case basis. Family presence during resuscitation and invasive procedures is another controversial issue in critical care. Family presence is defined as the attendance of family members in a place where they can see or touch the patient during invasive procedures or cardiopulmonary resuscitation (Meyers et al., 2000). Hupcey (1998) found that family presence in the ICU helped instil hope, a sense of control, trust in providers and the opportunity to have gaps in knowledge filled-in, all resulting in helping the patient to feel safe whilst in the ICU. This study recommends that family members be allowed during resuscitation and invasive procedures in the ICU, as long as it is within the policy and procedure that the institution establishes. In this study, the interdependence of nurses, patients and family members, family as a unit and psychosocial support is related to the concept of family presence. Based on this study, this researcher recommends family inclusion and participation in daily rounds as highly beneficial. The burden imposed by the challenges related to privacy and teaching of the resident teams is outweighed by the greater benefit of improving bi-directional communication between families and the healthcare team (Davidson et al., 2007). A formal interdisciplinary conference can be used to discuss patient care goals and discharge planning (if applicable) with the family in the conference room on the unit. Criteria for the conference may be family request, patients who are mechanically ventilated for more than
280 three days, complicated cases in which the patients resuscitation status is in question, and those with poor prognosis and are terminally ill. This phenomenological study should be replicated with a larger number of participants in different patient populations. Although results of qualitative studies should not be generalised to broader populations, the researcher believes that the knowledge gained from this study may be of benefit to nursing practice, education and future research. This study affirms the need for nursing interventions that acknowledge and include the family in the critical illness experience and supports the tenets of family-centred care, which mandates the purposeful inclusion of the family in all aspects of care.
Conclusion Using phenomenology, Merleau-Ponty’s philosophical perspective and van Manen’s method of phenomenological research this study shed light on the phenomenon of the intensive care unit experience during critical illness in the ICU from the perspectives of patients, their family members, and the nurses. Understanding the person’s lived body and the notion that the experience of critical illness is dependent on the individual’s embodied temporal, spatial and relational horizons, rather than only the naturalistic, biological and physiological aspects, revealed new conception of critical illness that will provide caregivers knowledge about effective care. A better understanding and description of these experiences was revealed towards a more holistic, subjective consideration of the person’s narrative and life world which opens new ways for coping amongst patients and their families, as well as care giving possibilities for the nurses. The patient’s experiences as it relates to finding meaning during critical illness, centred on obtaining support from their families and professionalism from the nurse. Adaptation in the ICU, as experienced by nurses, patients and family members integrates family as a unit, physical care/comfort, physiological care and psychosocial support resulting in transformation.
Source of funding This study was funded by the 2009 American Association of Critical Care Nurses (AACN) Phillips Medical Systems Outcomes for Excellence Research Grant and the Teachers College Columbia University Nursing Education Alumni Association (NEAA) Pre-Doctoral Research Award.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at doi:10.1016/ j.iccn.2011.08.001.
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