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(Chest. 2001;120:469S-473S.)
© 2001 American College of Chest Physicians

Qualitative Studies on the Patient’s Experience of Weaning From Mechanical Ventilation*

Deborah J. Cook, MD; Maureen O. Meade, MD and Anne G. Perry, RN, EdD

* From the Department of Medicine (Drs. Cook and Meade), McMaster University, Hamilton, Ontario, Canada; and the School of Nursing (Ms. Perry), St. Louis University, St. Louis, MO.

Correspondence to: Deborah J. Cook, MD, McMaster University, Faculty of Health Sciences Center, Department of Clinical Epidemiology, 1200 Main St West, Hamilton, Ontario, Canada; e-mail: debcook{at}mcmaster.ca


    Abstract
 TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 
In contrast to primarily deductive quantitative research, qualitative research aims to interpret data to develop theoretical insights that describe and explain phenomena such as interactions, experiences, roles, perspectives, and organizations. In this review, we summarize qualitative studies that used primarily in-depth personal interviews as a data collection method and a grounded theory analytic approach. The liberal use of illustrative excerpts and interpretive descriptions offer clinicians vicarious accounts of patient experiences of weaning from mechanical ventilation. Important experiences of patients during their weaning from mechanical ventilation included frustration, uncertainty, hopelessness, fear, and lack of mastery. The extent to which, in at least some patients, these experiences were determinants of weaning failure, consequences of weaning failure, or both, was difficult to establish. An assumption of this genre of research is that if clinicians understand the lived experiences of patients, they can better appreciate patient needs during the weaning process, and by inference, their role as clinicians during weaning from mechanical ventilation.

Key Words: communication • mechanical ventilation • multidisciplinary • qualitative research • quality of life • systematic reviews • weaning


    Introduction
 TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 
Most research into weaning from mechanical ventilation has analyzed factors predictive of sustained extubation, or evaluated alternative methods to hasten the safe liberation from mechanical ventilation. Fewer investigations have examined the experience of weaning from mechanical ventilation from the patient’s point of view. An awareness of these experiences is important for clinicians, and attending to them is integral to the holistic practice of critical care medicine.

In one observational study, 1 the psychological status of 43 consecutive patients who had undergone successful weaning 48 to 96 h earlier was recorded using an interviewer-administered 32-item questionnaire. Several difficult experiences were recorded, including an inability to communicate, sleep disorders, diffuse anxiety, depression, and fear of abandonment by staff. Although patients received no sedation for 48 h, many could not recall distinguishing between night and day, and they reported being confused during weaning.

In another investigation, 10 alert patients who were receiving mechanical ventilation, who were physiologically ready to wean, and who had undergone two to five failed weaning attempts underwent extensive psychometric testing.2 Several instruments were used, including the multidimensional health locus of control scales form, the Hope scale, the Norbeck social support questionnaire, and a scale measuring fear and other responses to mechanical ventilation. Mechanical ventilation was reported as a moderately fearful experience. Patients felt as though their locus of control was external to themselves, reflecting the intense dependence they have on the ICU team and on family members. As patients were weaned from mechanical ventilation, the locus of control was internalized. Hope increased as time passed following successful weaning, and hopelessness predominated for patients who continued to require mechanical ventilation.

Observational studies such as the foregoing investigations can quantitate the psychological effects of weaning. Other quantitative research such as epidemiologic investigations and randomized trials measure variables and their relationships with each other, testing hypotheses in the clinical setting. Since clinicians are trained to think mechanistically and to draw conclusions using pathophysiologic rationale and reasoning, the biomedical literature reflects this orientation, containing primarily deductive, quantitative research. In contrast, qualitative research is inductive and interpretive.3

The purpose of this review is to describe and summarize the qualitative studies on weaning from mechanical ventilation that offer insight into emotional and experiential phenomena. Qualitative analysis aims to interpret the data to develop theoretical insights that describe and explain phenomena such as interactions, experiences, roles, perspectives, and organizations.4 Thus, qualitative research questions tend to inquire less about "whether" or "how much," but more about "what," "how," and "why." Reports of qualitative studies have only recently been published in mainstream biomedical journals5 and are increasing in number each year.6


    Materials and Methods
 TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 
Eligibility Criteria
We included qualitative studies describing the experiences of patients undergoing weaning from mechanical ventilation. We excluded quantitative studies with the same goal, in which patient experience was measured clinimetrically using only questionnaires or validated instruments. We excluded qualitative studies of the experience of clinicians caring for patients who are weaning from mechanical ventilation.

Search for Relevant Studies
In addition to the extensive bibliographic search reported in earlier systematic reviews in this supplement, we also used personal files and contacts with experts to identify potentially relevant studies. Articles were selected for inclusion by two intensivists, in duplicate, independently.

Data Interpretation and Assessment of Methodological Quality
Data interpretation and quality assessment were conducted by two reviewers using critical appraisal questions for qualitative studies.7 In this review, we considered whether participants were relevant to the research question and whether their selection was well-reasoned, whether the data collection methods were appropriate for the research objectives, whether the data collection was comprehensive enough to support rich and robust descriptions of the observed events, and whether the data were appropriately analyzed and the findings adequately corroborated.

Qualitative researchers typically collect relevant data, observe patterns in the data, organize these into a conceptual framework, then resume data collection to both explore and to challenge this conceptual framework. The validation of qualitative research findings involves processes collectively described as triangulation methods (although three methods are not needed; this is a navigational metaphor). These techniques may include using multiple data sources (eg, family members of ICU patients and clinicians), multiple data collection methods (eg, use of in-depth interviews and focus groups), multiple disciplinary perspectives (eg, nursing, medicine, and psychology), and comparison with existing theory.


    Results
 TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 
We identified five qualitative studies8 9 10 11 12 of the patient experience during weaning. We describe and appraise each study and its results below.

Psychosocial Factors Potentially Contributing to Weaning Difficulty
In an early qualitative study using participant observation,8 investigators explored to what extent psychosocial factors might contribute to difficulty in weaning patients with COPD from mechanical ventilation. Over the course of 1 year in a respiratory ICU, the psychiatry service was consulted for 10 patients. Of these, four patients, representing 2.2% of all ICU admissions, met the physiologic criteria for weaning but were considered to have a major impediment to weaning on the basis of "emotional factors." Using a case-study approach, investigators described the history of two of these four patients. Family members were interviewed for pertinent history, and nurses were interviewed to elicit their assessment of patient anxiety. Patients were asked to self-report the Zung depression scale, but their competence and ability to engage was not described.

In terms of the validity of this qualitative investigation, the type of participant was appropriate to the objective of the study. An in-depth case study of a small number of participants is a valid methodology,13 but the rationale for and the methods used to describe these two cases were not provided. Interview guides, transcribed tapes, and the analysis of the information are not reported; therefore, we cannot judge whether the data collection methods were comprehensive and appropriate to the study objectives. The use of an instrument to quantitatively measure depression did not serve as an interpretive research method but only augmented the information in this qualitative report. Descriptions of the observed events were minimal and poorly corroborated.

Patients who had difficulty weaning were compared with those who did not. Through undisclosed methods, a retrospective attempt was made to develop the criteria for the early identification of a failure to wean being due to psychosocial or emotional factors. Patient self-reports of depression were considered to be unreliable. Predictors of emotional impediments contributing to weaning failure suggested that recent object loss and psychiatric treatment might be important.

The methods and results of this study were described briefly. The description was not evocative, the analysis was not faithful to the data, and no theory was provided. This study was an early investigation suggesting that weaning difficulty is sometimes associated with emotional factors, and that patients who meet the physiologic criteria for weaning but who are not progressing should be evaluated by a multidisciplinary health-care team to explore and address these barriers. Some recommendations are made in this report, albeit not based on evidence from the study itself, about the judicious use of antidepressant or psychotropic medications when appropriate.

Experience of the Weaning Process
In another qualitative study, the objective was to understand patients’ experiences during their weaning from mechanical ventilation.9 Patients who had received mechanical ventilation for at least 18 h were recruited using classified advertisements. Interviews were conducted in the participants’ homes for 9 of 12 individuals, and through telephone interviews for 3 of 12 individuals. Each interview lasted 20 to 90 min, and it involved general questions and compare/contrast questions. Participants were asked to describe their thoughts, feelings, and actions at the time that they had initially realized they were receiving mechanical ventilation, during the time they received mechanical ventilation, and at the time they were removed from the ventilator. The interactions and communications between participants and hospital personnel were probed. The interviews took place 2 to 108 months (mean, 31 months) after mechanical ventilation. Audiotapes were transcribed verbatim. Field notes were used, although it was not reported for whom or on what basis these notes were taken. Coding was performed using indicators that were transformed into themes, which then were clustered into similar themes.

The suitability of patient selection and comprehensiveness for the study objectives was not clear; however, data collection methods were reasonably well-described. Generally, telephone interviews are best suited to structured, directed questioning using quantitative methods; telephone interviews also change the interaction between interviewer and participants, and preclude the interpretation of body language that might be recorded in field notes. The analysis for this study was done by one person; no triangulation methods are described.

Participants generated the following 15 thematic clusters: (1) preventilation event; (2) realization of the respirator; (3) proximity of death; (4) patients’ responses to the ventilator; (5) responses to the endotracheal tube or tracheostomy; (6) physical care and therapies experienced by mechanically ventilated patients; (7) effect of mechanical ventilation on senses; (8) communication; (9) role of significant others; (10) mechanical ventilator mishaps; (11) interactions between patients and health-care providers; (12) the process of weaning; (13) extubation and ventilator removal; (14) after-effects of mechanical ventilation; and (15) recommendations from patients.

The cluster relating to the process of weaning briefly describes the difficulty and frustration associated with the process. Patients complained of the readjustment in breathing pattern after being put back on the ventilator and clearly distinguished the sensations associated with unassisted ventilation, compared with assisted ventilation. Patients linked being taken off the ventilator with improvement. One patient realized that the longer the time spent off the ventilator, the greater the improvement in health. Recommendations for the ICU team that were generated by the patients included the following: more explanations about the ventilator, including what to expect; and mentioning that sometimes the patients’ breathing was not going to match the pattern of the ventilator. An illustrative quotation is included from a participant who would have preferred knowing, "you can relax, and try to get back in synch with it, or let the nurses know you are waking up." Participants also requested guidance about concrete coping strategies while they were receiving mechanical ventilation.

A theory is not developed in this report, and the results are not generalized to theory. Nevertheless, many of the quotes and their interpretation are compelling. The dominant communication pattern between nurse and patient was described as an exchange of factual information by the nurse. Some participants emerged from their experience of mechanical ventilation with memories that scarred them. They described unhelpful interventions such as being told to "calm down and relax" in the face of patient-ventilator dyssynchrony. The dominant feelings were frustration and helplessness.

Metaphors Used to Communicate About Weaning
To understand how patients implicitly make meaning out of their experiences, the objective of another study10 was to examine the metaphors used by critically ill patients about their ventilator weaning experience. Twenty patients were invited to participate in a study in which they were interviewed within 5 days of ICU discharge. An open-ended interview guide and an interactive approach were used for each interview that lasted 20 to 45 min. Patients had received ventilation for a mean of 32 days (range, 5 to 214 days), and weaning had lasted a mean of 15 days (range, 1 to 45 days).

Since people communicate about their inner world through language, feelings and meaning can be expressed through metaphors. In this report, the following four categories of metaphors were found, in ascending order of frequency: (1) physical discomfort; (2) nurse caring; (3) altered self; and (4) patient work. Excerpts such as "breathing for my life" and "couldn’t tell my brain to breath" were illustrative. Although many phrases were presented, only some were metaphors, highlighting the reality that most discourse is direct and concrete.

The data collection methods in this study were described briefly. The analytic methods were not outlined, and the use of triangulation by another investigator, medical subspecialty, or data collection method was not mentioned. Authors might have distinguished among semiotic elements (eg, metaphors, signs, symbols, and narrative fragments) to more richly interpret the dialog and illness narratives. Although metaphors can be used to organize ideas and to create imagery for constructing illness narratives that others find compelling, in this study the metaphors were the ends themselves rather than the building blocks for narratives. No theoretical conclusions were provided. Nevertheless, some interesting metaphors and related concepts were expressed in this article regarding the foundational care and comfort attributed to nurses during weaning.

Linking Patient Experience to Nursing Work
A study by Logan and Jenny11 in 1997 was derived from a large qualitative database by the same authors. The objective was to examine patients’ subjective experiences of mechanical ventilation and weaning. Additional methodological details were provided, including the 10 interview questions, which were conceived on the basis of prior qualitative research providing insights about nurses’ perceptions of the weaning process. Data collection stopped at the point of informational redundancy. Coding was done in duplicate, and interpretation was iterated with data collection. Triangulation was conducted with a research associate, and debriefing was conducted with peers and through an external qualitative research and critical-care expert.

The following four themes arose from patients concerning ventilation and weaning: (1) sense making; (2) enduring; (3) preserving self; and (4) controlling responses. The study revealed that patients experienced physical, cognitive, and emotional work. These themes represented patient concerns and were linked with specific nursing strategies that may help the patients. This qualitative report contained useful practical implications for nurses helping patients to wean from mechanical ventilation, which was explored in more detail in related reports.

Uncertainty and Patient Perception During Weaning
A study12 of patient uncertainty and stress during weaning had the following objectives: to determine levels of stress; to determine the helpfulness of information from nurses and the influence of other variables; and to explore patients’ perceptions. After extensive pretesting by an expert panel and pilot interviewing, eight open-ended questions were asked of 19 extubated patients. In this study, the domains of exploration, questions, probes, and prompts for the interview were not reported. Qualitative data were analyzed for content and were coded into themes. Individual interviews such as these tend to be useful for evoking personal experiences and perspectives.

Most patients experienced extreme uncertainty and stress during weaning. Patients with underlying pulmonary disease (compared to those without underlying disease) and women had worse experiences than men. Patients were afraid because they did not know what to expect and did not understand what was going on, including whether they would be on the ventilator for the rest of their lives. The dominant feeling that patients described was discomfort while weaning from mechanical ventilation. The second prominent theme was frustration at the inability to communicate. Patients were very appreciative of information provided by ICU nurses during weaning that promoted patient empowerment. This study highlights the stress and uncertainty of patients undergoing weaning and the crucial role that ICU nurses play in providing information that can reduce the intensity of these adverse experiences.


    Discussion
 TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 
Qualitative research reports are best understood as empirically based contributions to the ongoing dialog and exploration of social phenomena. These qualitative studies primarily used in-depth personal interviews as a data collection method and a grounded theory analytic approach. The liberal use of illustrative excerpts and interpretive descriptions offers clinicians vicarious accounts of patient experiences. The studies in this review captured some important experiences of patients while they were being weaned from mechanical ventilation, including frustration, uncertainty, hopelessness, fear, and lack of mastery. The extent to which, in at least some patients, these experiences are determinants of weaning failure, the consequences of weaning failure, or both, warrants further investigation. An assumption of this genre of research is that if clinicians understand the lived experiences of patients, they can better appreciate patient needs during the weaning process and, by inference, their own roles as clinicians during this process.

Several aids to interpreting qualitative research have been published.14 The most common approaches to collecting qualitative data involve one or more of the following: field observations; interviews; and document analysis. The data collection methods should put the researchers in a position to observe the social behavior and communications that they seek to describe. Data collection needs to be comprehensive enough in both breadth (ie, types of observations) and depth (ie, extent of observation of each type) to generate and support the interpretations. Data collection and analysis often proceed concurrently. Since the product of a qualitative study is a narrative, the conceptual categories should be sensible and well described. The use of examples gives readers insight into the nature of the social phenomena as well as the sensibility of how investigators interpreted them.

The qualitative methods of the studies included in this review were variable; some design features in each study were very good. Since traditional qualitative research reports are lengthy, their discursive format presents a challenge in adapting them to a typical journal article length. Thus, there can be a tension between reporting a detailed methodology section and a brief description of results. It is noteworthy that qualitative research on weaning from mechanical ventilation has been almost exclusively conducted on well-educated, English-speaking patients and caregivers. This demographic profile shapes the findings of these studies and highlights the need for additional research investigating a broader population. Research is likely to improve in this field as more clinicians become trained in qualitative methods and the merits of those methods are appreciated for multiple clinical, educational, research, and administrative purposes.15 16 17 18

Insights rather than clinical directives are the goal of studies using an interpretive methodology.7 However, some studies go beyond sharing wisdom about patient experiences, inviting action-oriented recommendations to consider in practice. For example, in a study19 of nurses’ experiences during weaning, clinical initiatives that might promote ventilator independence were developed. Five themes that defined a dysfunctional ventilatory weaning response and its associated nursing implications included the following: (1) knowing the patient (which was the basis for expert nursing judgment); (2) acknowledging the work of weaning; (3) developing a trusting relationship; (4) the patient power base (consisting of two dimensions, physical energy and perceived self-control); and (5) situational factors (ie, nurses’ perceptions of what is needed for a predictable environment). A related analysis describes a framework for emotionally supportive nursing interventions to optimize the weaning process,20 including physiologic factors, situational factors (ie, establishing patient trust, controlling and enhancing social support, modifying the environment, and advocacy), and psychological factors (ie, teaching patients, addressing impaired self-esteem and hopelessness, improving self-efficacy, coaching, and providing support). Although to our knowledge there are no empiric data to demonstrate that these caregiver approaches favorably influence weaning, this kind of research shows how qualitative and quantitative studies each make useful contributions to knowledge. These research methods also can be used in tandem (ie, qualitative investigation to generate theories and quantitative investigations to test implied hypotheses).

Individual qualitative research reports can richly describe and explain social phenomena, and can be synthesized using meta-ethnography.21 Unlike meta-analysis, which involves aggregation, meta-ethnography is interpretive, requiring de novo document analysis of textual reports and the creation of new interpretations.22 This review is limited in that, while we used systematic review methods to search, select, and appraise the primary studies included herein, this article does not represent meta-ethnography.

To date, most investigations into the experience of critical illness have been quantitative and have been focused on issues such as the pain and discomfort of dying,23 posttraumatic stress disorder,24 psychological morbidity following critical illness,25 and post-ICU quality of life.26 However, qualitative research that is conducted using transdisciplinary perspectives has a great potential to link the health sciences and social sciences,27 informing us about the emotional, psychological, and social phenomena that influence the experience of health, illness, and health care. Examples of qualitative studies relevant to critical-care medicine address advance directives28 and the use of technology to orchestrate death.29 A field ripe for qualitative investigation is end-of-life care in the ICU.30

The data included in this systematic review and a more comprehensive discussion of the original articles are included in an Evidence Report of the Agency for Healthcare Research and Quality.31


    Footnotes
 
This article is based on work performed by the McMaster University Evidence-based Practice Center, under contract to the Agency for Healthcare Research and Quality (Contract No. 290-97-0017), Rockville, MD.


    References
 TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 

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  31. Criteria for weaning from mechanical ventilation. Evidence Report/Technology Assessment No. 23 from the Agency for Healthcare Research and Quality: AHRQ Publication No. 01-E010




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