Intensive and Critical Care Nursing (2004) 20, 190—199

ORIGINAL ARTICLE

Reclaiming the everyday world: how long-termventilated patients in critical care seek togain aspects of power and control overtheir environment

Patricia Johnson*

Critical Care Programs, Faculty of Nursing and Health, Griffith University Gold Coast,PMB 50 Gold Coast Mail Centre, Qld 9726, Australia

Accepted 5 May 2004

KEYWORDSCritical care nurse;Patient perspective;Long-term mechanicalventilation;Heideggerianphenomenology

Summary Critical care nurses are increasingly seeking to base patient care on ev-idence derived from research studies. The purpose of this study was to explore themeanings former patients attributed to being on long-term mechanical ventilationin a critical care unit (CCU) in Australia. Using Heideggerian phenomenology, un-structured interviews were undertaken with nine participants. Data were analysedthematically using the method developed by van Manen. Thematic analysis revealedfour major themes. This article presents the findings from the theme titled: Reclaim-ing the everyday world, which describes how the study participants gained comfortfrom the presence of nurses and their families, sought control over their treatments,and questioned and interpreted the environment, in order to reclaim self. The studyhighlighted the central role of nurses in patient care, and served as a basis for a num-ber of recommendations, which include recognising the significant role of nurses andfamily in patient care, and being aware that patients may want more control overtheir environment and instigate ways to facilitate this. Further research is warrantedto examine CCU patients’ perceived level of control and power, and to investigatethe extent and type of involvement CCU patients would like to have in their care.© 2004 Elsevier Ltd. All rights reserved.

Introduction

Critical care nurses aim to provide competent andholistic care for critically ill patients. In order todo this, they are increasingly incorporating prac-tices into their daily nursing care that are derivedfrom evidence from research studies that have ex-

*Tel.: +61 755528849; fax: +61 755528526.E-mail address: p.johnson@griffith.edu.au (P. Johnson).

amined the effects of health care treatments fromthe patients’ perspective. This is evident by thegrowing number of studies that have been under-taken over the last three decades to explore theexperience for patients of critical illness, with thepurpose of using findings to improve patient com-fort and standard of care.Although a substantial body of research has been

undertaken in this area, there remains an ongoingneed to more fully understand the meaning criti-cally ill patients attribute to their experience, so

0964-3397/$ — see front matter © 2004 Elsevier Ltd. All rights reserved.doi:10.1016/j.iccn.2004.05.001

Reclaiming the everyday world 191

as to enable critical care nurses to plan for anddeliver the most appropriate and evidence-basedcare (Granberg, 2001; Jones and Lyons, 2003). Onearea of the critical illness experience identified asneeding further research was the meaning that pa-tients attribute to being on long-term mechanicalventilation in the critical care unit, as a literaturesearch revealed that very few studies had beenundertaken with this aspect as a particular focus.It is well-recognised that ventilator-dependent pa-tients, particularly those on long-term ventilation,present one of the most challenging aspects ofcritical care practice, as their management andtreatment incorporates the utilisation of a complexarray of biomedical equipment, and sophisticateddiagnostic and therapeutic regimes (Urdan et al.,2002). It is therefore essential that critical carenurses have access to the best available evidenceon managing the care of ventilated patients, in-cluding those on long-term mechanical ventilation.This must include evidence derived from studiesthat examine the effect and meaning of this formof treatment from the viewpoint of the patient. Toextend the knowledge and build evidence of whatit is like for patients to be on long-term mechanicalventilation, which for the purpose of this study isdefined as a period of mechanical ventilation last-ing seven days or more, a qualitative study using aphenomenological approach was undertaken. Thispaper focuses specifically on one of the four majorthemes identified in the study, titled: Reclaimingthe everyday world, as this is an aspect that has notbeen revealed in depth in previous studies, and thusprovides new insights into this patient experience.

Literature review

To date, a number of studies have explored theexperience of critical illness and critical care hos-pitalisation from the patients’ perspective, usinga variety of research approaches including quanti-tative and qualitative methodologies (Adler, 1997;Asbury, 1985; Ballard, 1981; Bergbom-Engberget al., 1988; Bradburn and Hewitt, 1980; Chew,1986; Cochrane and Ganong, 1989; DeMeyer, 1967;Easton and MacKenzie, 1988; Elpern et al., 1992;Granberg, 2001; Gries and Fernsler, 1988; Haf-steindottir, 1996; Hupcey and Zimmerman, 2000;Jablonski, 1994; Johnson and Sexton, 1990; Joneset al., 1979; Logan and Jenny, 1997; McKinleyet al., 2002; Papathanassoglou and Patiraki, 2003;Parker, 1997; Riggio et al., 1982; Russell, 1999). Insummary, findings from studies undertaken priorto 1990 indicate that patients experienced com-munication difficulties, insufficient explanation of

procedures by nurses, activity restrictions, anxietyand panic, nightmares and hallucinations, feelingsof insecurity and helplessness, and discomfort re-lated to equipment and various nursing procedures.The studies from 1990 onward revealed similar find-ings, once again highlighting the ongoing problemsassociated with poor communication, and feelingsof dependence and helplessness. In addition, thepresence and use of technology was reported as ex-perienced in different ways, with some participantsfinding it promoted feelings of security and comfort(McKinley et al., 2002; Russell, 1999), whilst othersfound it frightening (Adler, 1997; Jablonski, 1994;Parker, 1997; Granberg, 2001). Concerns were alsoraised by study participants related to perceptionsthat nurses misused power to gain control over pa-tients (Adler, 1997; Jablonski, 1994; Russell, 1999).There were, however, more reports of positive ex-periences related to the care provided by nurses,particularly regarding the information provided topatients and their families (Hupcey and Zimmer-man, 2000; McKinley et al., 2002; Russell, 1999).However, none of these studies specifically fo-

cused on long-term mechanical ventilation. Thus,the meaning of this particular critical care experi-ence from the patients’ perspective needed to bemore fully explored.

Purpose of the study

This purpose of this present study was to overcomethis gap in the literature by exploring, describingand interpreting the meaning a group of former pa-tients attributed to their experience of being onlong-term mechanical ventilation in a critical careunit in Australia.

Methodology

The research question asked: What does it mean tobe on long-termmechanical ventilation in a criticalcare unit? To reach an understanding of this ques-tion it was essential to turn to those who have livedthrough such an experience, and utilise an appro-priate research approach that can assist in provid-ing an answer to the research question, and is alsosensitive to those who participate in the study.Qualitative methodology, in particular phe-

nomenology, was seen as the most appropriateapproach, as it offered a methodological and philo-sophical perspective whose purpose is to developa greater understanding through description, re-flection, and awareness of the many meaningsof particular phenomenon (van Manen, 1984).

192 P. Johnson

Phenomenology does not impose structures suchas hypotheses, or attempt to explain, predict andcontrol the world through generation of empiri-cal facts and scientific generalisations. Instead,phenomenology aims at gaining an insightful un-derstanding and description of human meaning bybringing us into closer contact with those expe-riencing a phenomenon. Thus, phenomenologicalinquiry takes into account the meanings individualsattribute to a situation. This is extremely impor-tant, because as nurses we need to understandpeople’s experiences of illness and illness treat-ments to allow us to better understand and carefor patients throughout their illness episode.The particular phenomenological approach uti-

lised in this study was ontological phenomenologyinformed by the ideas of Heiddegger (1927/1962).The decision to use this approach to inquiry wasguided by the research question, which is con-cerned with the meaning people attribute to aparticular experience, in this instance being onlong-term mechanical ventilation in a critical careunit. Heideggerian phenomenology is ontologi-cal as it concerned with human ways of beingin the world, and acknowledges that researcherscannot put aside, or bracket, their own personalpre-understandings or assumptions, when seekingto explore a phenomenon that is of interest tothem. As an experienced critical care nurse, I wasinterested in exploring what it was like for patientsto be on long-term mechanical ventilation. Thus, Ibought to this studymy background as a critical carenurse, which interacted throughout the interpre-tive process and allowed me to develop interpre-tations based on both the participants’ stories andmy own understanding and experience of caring forlong-term ventilated patients in critical care units.It is imperative that researchers using Heideg-

gerian phenomenology make explicit how this par-ticular approach informs and guides their researchprocess and study findings. There are a numberof concepts and tenets underpinning Heideggerianphenomenology that need to be considered. Hei-degger believed that human beings are situatedand engaged in their world. Situation in this senserefers to the space in which humans exist, and in-cludes the concerns, issues, information, resourcesand constraints at a given time as experienced bya particular person. Engagement characterises ev-eryday involvement in the world. Heidegger alsoemphasised the primacy of language as a mediumof interpretation. Researchers therefore need torecognise the relevance and importance of inter-preting interview data from this perspective.Heiddegger (1927/1962) believed that every-

one exists hermeneutically through interpreting

and finding meaning in their lived world, so theconcept of the hermeneutical circle is central toresearchers taking this approach. The hermeneu-tic circle involves a continuous, circular processwhereby the interpreter, that is the researcher,moves back and forth between the whole and thepart of the text derived from participants. Thehermeneutical circle includes both the participantsand researcher. The participants tell their storyfrom their own interpretation, and the researcherinterprets this from his or her background and expe-rience in conjunction with that of the participants.Thus, there is a moving back and forth, especiallyif the researcher takes back to the participants theinterpretation for their consideration.Such an approach is appropriate and useful. It

enabled me, as the researcher, to explore a phe-nomenon from the experiencing person’s perspec-tive and bring to light a greater understanding andawareness of the meaning the study participantsattributed to their experience. Throughout theresearch process, an authentic and textually richpicture of what it means to experience long-termmechanical ventilation in a critical care unit wasrevealed. Thus, using this approach, I was ableto reveal how these people experienced the phe-nomenon, and generate an understanding of thisfrom an interpretation of the interview texts pro-vided by the participants.

Ethical considerations

Before commencing fieldwork it was necessary toseek and gain ethics approval from the relevantbodies, as it was essential that this research studywas conducted without harming participants (prin-ciple of beneficence), only after informed consentfrom participants, and following a rigorous method-ology and design (Polit and Hungler, 1995). Criticallyill patients and their families are a particularly vul-nerable group. As critical care researchers we needto adhere to these principles at all times, an issuerecently highlighted by Jones and Lyons (2003).

Study participants

A total of nine people participated in the study, ofwhom six were male and three female, with agesranging from 21 to 69 years. All had been previouslybeen hospitalised in one of three critical care unitsin southeast Queensland, Australia. This number ofparticipants was congruent with phenomenologicalstudies, where sample sizes tend to be small be-cause of the large amount of verbal data that mustbe analysed. The interview data from these partic-ipants was sufficiently comprehensive and rich to

Reclaiming the everyday world 193

ensure that an in-depth description and interpreta-tion of the phenomenon had been collected (Marcusand Liehr, 1998). In addition, after interviewing thenine participants, I judged I had achieved a full ‘tak-ing in of occurrences’ (Leininger, 1994, p. 106), andit would not be of any additional benefit to continueto collect data.The inclusion criteria for the study were: partic-

ipants be aged 18 years or over, and able to readand speak English; had been admitted with a criti-cal illness or injury to a critical care unit located insoutheast Queensland, Australia, during which timethey required mechanical ventilation for a period ofseven days or more; were conscious for some of thetime throughout their critical care hospitalisationand time of mechanical ventilation, and were ableto recall and articulate their experiences in English;and were willing to participate in the study by giv-ing their written consent following an explanationof the study and its aims, and the requirements fortheir participation.The study participants were recruited with the

assistance of the Charge Nurses from the criticalcare unit, or by word of mouth following advertisingof the study in a local newspaper. All participantswere informed about the study verbally, and alsogiven awritten information sheet and informed con-sent form that outlined the purpose of the study, an-ticipated outcomes and the way in which data wasto be collected and stored. Participants was askedwhere they would like the interview to take place,and informed that they could bring a support personwith them, for example, a close family member, tothe interview if they so desired. All participants re-quested that the interviews took place in their ownhome. To ensure anonymity, each participant wasgiven a pseudonym. The names given were: Bert,John, Max, Anne, Leanne, Shelley, Mark, Don andJames.

Data collection

Data were collected between January 2000 andDecember 2001, using unstructured in-depthaudio-taped interviews. Congruent with Heidegge-rian phenomenology, it was important that I informeach participant of my background and interestin the study prior to commencing the interview. Itherefore took the opportunity to reiterate the in-formation given to them previously, explaining thatI was a Registered Nurse with qualifications andconsiderable experience in critical care nursing.I also further explained the purpose of the study,and the reasons why it was important that thestudy be undertaken. This explanation emphasisedhow sharing their experiences with me may be of

benefit not only to critical care nurses and oth-ers involved in caring for long-term mechanicallyventilated patients, but also for future patientsrequiring this form of treatment. This process ofexplaining my study, and sharing information aboutmy self as nurse and researcher, enabled me to bewith the participants in this journey of inquiry.A total of 14 interviews were undertaken, 9 initial

interviews with 5 follow-up interviews. The lengthof time for interviews ranged from 45 to 140min.Five participants were interviewed a second time.The reason I chose to undertake a number of sec-ond interviews was to more fully explore some ofthe initial themes from my preliminary data analy-sis. Not all participants were interviewed a secondtime, as it was considered that sufficient confirma-tion of the researcher’s interpretation of the inter-view data had been affirmation by the majority ofparticipants.I began the interview by asking each participant

to recall his or her experience of being critically illand on a mechanical ventilator as best they could.I started by asking the following open-ended ques-tions: ‘‘Please tell me as much as you are ableto remember about your experience of being on amechanical ventilator in the critical care unit of xhospital, and ‘‘What did this experience mean foryou?’’ ‘‘You might like to start from the very be-ginning, and talk about how you first became crit-ically ill (or injured–—depending on the particularperson’s medical history), were admitted to criticalcare, and your subsequent stay in the hospital’’.The aim of these open-ended questions was to

enable participants to respond in their own words,which also allowed a greater breadth of data to beobtained as compared to more structured methods(Fontana and Frey, 1998). Once participants had ad-dressed these initial questions, several asked if any-thing they said would be helpful. That is, they ap-peared to be seeking confirmation that what theysaid would be useful, and not, as one participantsaid ‘‘a lot of rambling which no-one is interestedin’’. This was an interesting finding, and highlightedthe importance of nurses creating opportunities fortherapeutic conversations with patients about theirillness experience.

Data analysis

The audio-taped interviews were transcribed assoon as possible after each interview by a qualifiedtypist. Following this, each transcript was readseveral times in order to gain an understandingof each participant’s story. Data were analysedthematically using the method developed by vanManen (1990). This approach describes six activities

194 P. Johnson

for phenomenological research:

1. turning to a phenomenon which seriously inter-ests us and commits us to the world;

2. investigating experience as it is lived rather thanas we conceptualise it;

3. reflecting on the essential themes which char-acterise the phenomenon;

4. describing the phenomenon through the art ofwriting and rewriting;

5. maintaining a strong orientated pedagogical [ornursing] relation to the phenomenon;

6. balancing the research context by consideringparts and whole (pp. 30—31).

I found this approach useful as it is congruentwith the philosophical underpinnings of Heidegge-rian phenomenology, and does not attempt to iso-late or bracket the researcher’s own backgroundand understandings.

The question of rigour

In this study, rigour and trustworthiness of the studyprocess and its findings were demonstrated bymain-taining a clear audit trail at all times, maintainingprolonged contact and interaction with the partic-ipants/s, and taking preliminary findings back tothe participants for discussion and confirmation of

Table 1 Themes and sub-themes of the lived experience of critical illness and being on long-term mechanicalventilation.

Theme Sub-theme

Being thrown into an uneveryday world Discontinuity of the everyday worldBeing desituatedBeing disengaged from the everyday worldBeing taken over by others

Existing in an uneveryday world Experiencing fluctuating levels of consciousnessBeing unable to distinguish reality and timeExperiencing hallucinations and nightmaresLiving in an unfamiliar bodyExperiencing technology and othersRelying on technology and others for survivalQuestioning survival

Reclaiming the everyday world Re-engaging with staff and families in the critical care unitReceiving comfort from families and nursesSeeking control over treatments and attempting to communicateQuestioning and interpreting the environment and reclaiming self

Reframing the experience Reflecting on the experienceBeing a survivorLiving with the aftermathRationalising unfamiliar behaviour and experiencesRe-appraising the past and re-evaluating the future

interpretations. Such measures reflect the recom-mendations by several authors for indicating rigourin qualitative research, particularly when using aphenomenological approach (Koch, 1994; Leininger,1994; van Manen, 1990; Walters, 1995).

Findings

Thematic analysis of the data using this methodrevealed four major themes. These major themesencompass the critical illness episode, includingthe admission to the critical care unit, being onlong-term mechanical ventilation in the criticalcare unit, the transfer from the critical care unitto the hospital ward, and the discharge from thehospital to home. From these major themes, anontological description of being on long-term me-chanical ventilation in a critical care unit wasconstructed. These themes and their respectivesub-themes are outlined in Table 1. The presenta-tion and discussion of the findings in this article areconcerned with the third major theme, Reclaimingthe everyday world. The other major themes: Be-ing thrown into an uneveryday world, Existing in anuneveryday world, and Reframing the experience,as well as the overall phenomenological descriptionof the meaning of the experience, are discussed

Reclaiming the everyday world 195

elsewhere as part of a larger study (Johnson,2003).

Reclaiming the everyday world

This study found that participants initially expe-rienced the CCU as unfamiliar and frightening,far different to their usual known way of beingin the world. Reclaiming the everyday world de-scribes an aspect of their experience that per-haps signals the beginning of recovery, and re-veals the ways in which the participants, althoughstill on mechanical ventilation, sought to over-come some aspects of the uneveryday world ofthe critical care unit (CCU) environment and re-claim their everyday, known world. Within thistheme the significant role played by nurses, andparticipants’ families, in assisting them to getthrough this experience, is revealed. Reclaimingthe everyday world involves re-engaging with staffand families in the critical care unit, gaining com-fort through families and nurses, seeking controlover treatments and attempting to communicate,and questioning and interpreting the environmentand reclaiming self. Throughout the descriptionof this theme, excerpts from the interviews withthe participants are provided to demonstrate, andbring to light the meaning and interpretationsconstructed.

Re-engaging with staff and families in the criticalcare unitIn spite of the difficulties experienced by patients incommunicating with their caregivers and families,participants sought to reclaim the everyday worldthrough seeking to connect, or re-engage with staffand families in the CCU. Re-engaging meant feel-ing connected in a meaningful way to other peoplewithin the CCU, be it staff members, family mem-bers or both. Participants reported that when theywere able to re-engage with their others, they feltthat they were making positive progress towards re-covery and moving out of the CCU. They perceivedthat they were slowly getting back their own worldand their own way of being.

I first thought I would make it and get out of there[CCU], and that it would really happen, when Ihad the same nurse for a while, and we got toknow each other. She was great–—her name wasNurse A. She used to come in each morning andtell me all about what she had been doing, whatwas happening and so on. I felt that I mattered toher, I was important and we were friends. Eventhough I couldn’t talk because I was still on thatventilator, we somehow got along all right. She

really made a difference in making me feel thatI was gonna get out of there okay. (Mark)

Thus, re-engaging with others assisted in parti-cipants’ journey to recovery and a return to theirknown, everyday world.

Receiving comfort from families and nursesSimilar to previous studies, this study also revealedthat there are many unpleasant aspects associatedwith being critically ill in the CCU. Patients sufferin many ways related to the pain and discomfortassociated with their illness and the technologyused to manage it, the loss of control over theirability to effectively communicate, loss of normalbodily functioning, and reliance on others for sur-vival. This study found that when staff and familymembers acknowledged participants’ discomfortand their reliance on others, and instigated mea-sures to minimise or overcome this, participantsfelt comforted and encouraged.

Nurse B got me through it–—she got me throughthat time when I thought ‘‘Oh no, I just can’t dothis’’. She came along and said: ‘‘yes you can,you can do this.’’ It made such a difference–—thehuman touch. Amongst all that pain. (Don)

Max’s family provided him with enormous com-fort and support by helping ‘‘keep me sane, youknow in touch with the real world outside’’. Annealso recalled feeling comforted by her family:

Having them [family members] around, knowingthey were there and they loved me, and wantedme to get better, made it so much better. At timeslike that you feel so vulnerable and afraid. HavingN [husband] with me was so good. I didn’t feel allalone. Where would we all be without our familyto care for us, and be with us in times of need?(Anne)

James highlighted how important the presence ofnurses was for him during his time in the CCU.

I felt that all the nurses were really attentive.Well, it’s just that I felt their presence there,around me all the time. I may not always havebeen able to see them, or even know them, butI just knew, or I felt that they were always closeby. Because you knew they were always there,right beside you and would come straight away.Even when they had to do things to you, if theyexplained then this was okay most of the time.So I would say that nurses, I think it was alwaysnurses, I can’t remember too many other peo-ple, you know like doctors and physiotherapists.The nurses were close by, with you all the time.(James)

196 P. Johnson

I asked James to further describe how the closepresence of nurses made him feel. He replied that:

I think it makes you feel safe, because the nursesare always hovering. I had the greatest nursingof my whole life up there [CCU]. As soon as Icoughed, or later on gestured for some ice, theyknew exactly what I wanted. D [nurse] was bril-liant, he always took the trouble to try to find outwhat I wanted. He tried hard to communicate.He would watch my lips and mouth, because Icouldn’t use the board very well. I was so weak,and I forgot how to spell, just couldn’t seem toget it together, I was all groggy. You know, if some-one is close by then things will be all right, thingsshouldn’t go wrong. Well, as I said, they alwaysseemed to be there, and were very close. (James)

It was apparent that the presence of people, inparticular critical care nurses and family memberswho are perceived as caring, provided an enormoussource of comfort for participants.

Seeking control over treatments and attemptingto communicateReclaiming the everyday world also involved par-ticipants trying to take back some part of the con-trol of their life that they had handed over to staffon admission to CCU. Participants told of the manymeasures they used whilst on the mechanical ven-tilator to wrest back, or gain some control, overtheir treatments. Measures included tapping thepulse oximeter on the side of the bed or deliber-ately pushing things onto the floor in order to gainthe nurse’s attention, striving in a number of waysto initiate effective communication, and refusingto submit to treatments. Participants used theseactions to indicate that they wanted some controlover what was happening to them. They wanted toreclaim their everyday world and regain a more ac-tive role in their care.

Well this is probably the date where, yeah, I thinkit was only about two or three days before theyactually took it out like, [tracheostomy tube] youknowwhat I mean. But the feeling of being able totalk, you can’t explain how that felt. It just felt sogood, really, really good to know that, it was likecoming back alive again. It was like ‘I’m a humanbeing instead of a ‘vegetable’, I can actually talkto somebody and tell them what I want insteadof lying here going ‘‘erh erh erh erh erh’’. Mak-ing weird noises and just that feeling of being hu-man again. It actually made it feel like you werea human being again. You are happier in your-self which also makes you get better when you’rehappier with yourself and it wouldn’t be frustrat-

ing for anybody. You know the nurses would beable to turn around and know what you wantedto tell them and you would feel better becauseyou could tell them. (Bert)

In another example, Mark revealed what he didto try to regain some power and control over hissituation:

I deliberately used to knock my finger with thepeg on it [pulse oximeter] on the side of thebed. Just to get their attention. Drove themnuts, but made me feel good and in some sort ofcontrol–—which was a nice change. (Mark)

The inability to communicate whilst on amechan-ical ventilator is an anxiety-provoking event for CCUpatients. For the participants in this study, beingable to communicate effectively gave them somefeeling of power and control over their environmentand was a major step toward their recovery and be-ing able to move out of the world of critical care.

Questioning and interpreting the environmentand reclaiming selfStaff working in highly technical areas such as theCCU may view illnesses such as cardiac disease orrenal failure as conditions to be treated or managed(van der Riet, 1997), but to the critically ill personthey represent a totally new experience. Max cau-tions staff not to become desensitised to the needsof critically ill patients and their families, but in-stead recognise the uniqueness of each situation:‘‘They [critical care staff] may see sick and dyingpeople every day, but for the patient and their fam-ily this is hopefully a one off event. They shouldn’tbe blasé’’ (Max).There is no frame of reference within which criti-

cally ill people can judge their illness state. In orderto reclaim their everyday world, participants beganto focus on their surroundings and start to makesome sense or meaning from their situation. Beingable to question and interpret their world was an-other major step toward regaining their own senseof being and self.

Yes. I think I was more scared not knowing, be-cause I didn’t know what was happening to me. Icouldn’t move, I couldn’t talk, couldn’t commu-nicate, you know, I couldn’t see. I was just lyingthere like a vegetable in the bed and like, oneof the nurses eventually, and I haven’t seen hersince because I’d like to thank her you know fortelling me what was wrong with me in layman’sterms. You know, maybe not telling me theyhoped to protect me. But then my mum broughtin something that a friend had got off the in-ternet about what I’ve got, and it was actually

Reclaiming the everyday world 197

written by a neurologist. He’d written exactlywhat it was about and all the difficulties therewas with G [patient’s medical condition], whatthey know about it, and what the success ratewas at, and about getting better. That helpedme so much. (Leanne)

Discussion

The selected findings presented in this article,which are derived from a larger study that ex-amined the meaning a group of people (formerpatients) attributed to being on long-term mechan-ical ventilation in a critical care unit, provide arich description and interpretation of one aspect ofthis critical care experience. The findings increaseknowledge and understanding of patients’ perspec-tives of critical illness and long-term mechanicalventilation, and also reveal new insights. Reclaim-ing the everyday world signifies the importance forpatients on long-term mechanical ventilation togain some control and power over their environ-ment as a way of working towards recovery andregaining life as it was before the critical illnessepisode. Re-engaging and connecting with the CCUstaff and family members was one way that helpedto reclaim the everyday world, and overcome theunfamiliarity and strangeness of the CCU. The com-forting and supporting presence of both the criticalcare nurses, other staff members, and families,played a significant and essential role in enablingparticipants to ‘‘get through’’ the experience, and‘‘move on’’ out of the CCU and toward recov-ery. This finding is consistent with the findings ofprevious studies (Adler, 1997; Burfitt et al., 1993;Hammond, 1995; McKinley et al., 2002; Parker,1997; Russell, 1999; Wallis, 1998) that highlightthe importance for critically ill patients of havingthe close presence of caring and supportive nurses,and family members.The findings from this theme also support the

results of previous research that examined therole patients play in determining aspects of theirown care, the need to know what is happeningto them, and questioning their treatments (Adler,1997; Hupcey and Zimmerman, 2000; Logan andJenny, 1997; Russell, 1999). This present study ex-tends knowledge of this aspect, and reveals newinsights into the ways that participants seek to re-claim power and control over their environment.Although this may not be an important factor forshort stay patients in the CCU, it is apparent thatpatients who are on long-term ventilation feel theneed to gain some measure of input and influenceover their situation. Of significance also is the rev-

elation that patients and their families want rel-evant and appropriate information, and will seekthis from other sources apart from critical carestaff if necessary. This may be related to a numberof factors including an increased consumer aware-ness of the medical treatments and technologiesthat are available to treat illness and disease, andknowledge of the rights of patients and families ashealth care consumers.

Nursing implications

The findings from this study have numerous implica-tions for nursing practice, education and future re-search. Phenomenological research provides nurseswith the opportunity to see the experience of othersand relate this to the way they and others practise.Findings from rigorous phenomenological studiesfacilitates nurses’ awareness of patients’ percep-tions, and the responsibility that nurses have in in-fluencing the care and the experiences of patientsin the CCU, and beyond. In this way, phenomenol-ogy can meaningfully inform practice by provid-ing valuable evidence on which to base nursingpractice.Critical care nurses need to be cognisant of the

importance of maintaining a close and supportivepresence with the patient, and ensure that theyapply technologies and treatments in a way thatrecognises and is sensitive to the lived experienceof individual patients. As mechanically ventilatedpatients are hindered in their efforts to communi-cate by the presence of an endotracheal tube, it isessential that nurses consistently utilise aids suchas alphabet charts, writing boards and computerdesigned communication devices to help to over-come some of the frustration associated with thepatient’s inability to verbally. Critical care nursesshould also continuously explain and re-orientatethe intubated and ventilated patient to the envi-ronment, and seek to develop relationships withpatients and their families that are based on botheffective and informative communication. Further-more, as the ability to communicate assists pa-tients to engage with others and gain some controlover what is happening to them, it is an importancemeans of helping them to reclaim their everydayworld.It is also important that the primary role of

families and loved ones is recognised and incor-porated in all aspects of patient care in the CCU.With this in mind, critical care units should lookto adopting unrestricted visiting policies, and reg-ulate visits according to the individual patient’sneeds rather than rigid protocols. Clear explana-

198 P. Johnson

tion of patient care activities should be given tothe family, and information about the CCU and itsprocedures should be readily accessible and easyto comprehend. For example, booklets such as thatrecently published by Chaboyer and Johnson (2002)provide patients and families with easy to readinformation about what happens in the CCU andafter discharge. Nurses should also support and in-struct, where appropriate, those family memberswho may wish to help with patient care activities.By developing an understanding and appreciationof the role of families in the CCU, nurses can assistfamily members in their supportive role. With thisin mind, critical care education programs shouldalso include in-depth information of the psycholog-ical and social aspects of patient and family care,and communication and counselling education andtraining.The finding that participants sought to take back

some control over their care whilst in the CCU alsoraises important implications for practice. Althoughcritically ill, long-term mechanically ventilated pa-tients are extremely vulnerable, and dependent ontechnology and others for survival for a great dealof the time they are in the CCU, critical care nursesdo need to recognise patients’ right to participate,where possible and appropriate, in their own careand the decisions made about their care. The im-portance of providing clear explanations cannotbe over-emphasised and, where possible, patientsshould be included in discussions about their planof care and ongoing management in the CCU. Pos-sible nursing interventions that could allow patientparticipation in their care could include decisionsrelating to patient positioning, rest patterns, hy-giene activities, and visitors. Nurses need to alsobe aware of the potential power they can haveover patients, and ensure that they do not abusethis by disregarding or not considering patients’wishes to have some say in what is happeningto them.This study has also revealed a number of areas

that warrant further research. In particular, thereis a need to examine CCU patients’ perceived levelof control and power, as this is clearly an area thathas yet to be adequately described. In addition,studies need to be undertaken to explore, and thenevaluate, the extent and type of involvement pa-tients would like to have in their care whilst in theCCU. Findings from such studies would help deter-mine the extent of this issue, provide knowledgeon which to base further studies aimed at devel-oping and testing the efficacy and appropriatenessof interventions, and provide critical care nurseswith evidence on which to plan for patient careactivities.

Conclusion

Critical care nurses place the highest priority onrecognising and meeting the needs of the criti-cally ill person. Findings from this study provide afurther dimension to the knowledge and evidencebase of what it is like for people to be on long-termmechanical ventilation in a critical care unit. Theseresearch findings are significant for critical carenurses, educators and researchers, as they can as-sist in the planning and provision of holistic andevidence-based practice.

Acknowledgements

I would like to thank the people who kindly agreedto participate in this project. I am deeply appre-ciative and humbled by their willingness to sharetheir unique and rich stories with me. Thanks alsogoes to the critical care nurses who supported mein this study, and assisted in recruiting eligible par-ticipants. I would also like to thank Dr WinsomeSt John and Associate Professor Wendy Moyle fortheir expert assistance and advice. Financial sup-port for this study was provided through a researchgrant from the Queensland Nursing Council (no: RAN0034).

References

Adler D. The experience and caring needs of critically ill, me-chanically ventilated patients. Unpublished doctoral disser-tation. University of Pennsylvania; 1997.

Asbury AJ. Patients’ memories and reactions to intensive care.Care Crit Ill 1985;1:12—3.

Ballard KS. Identification of environmental stressors for patientsin a surgical intensive care unit. Issues Mental Health Nurs1981;3(1/2):89—108.

Bergbom-Engberg I, Hallenberg B, Wickstrom I, Haljamae H. Aretrospective study of patients’ recall of respirator treat-ment (1): study design and basic findings. Intensive CareNurs 1988;4(3):56—61.

Bradburn BG, Hewitt PB. The effect of the intensive therapyward environment on patients’ subjective impressions: afollow-up study. Intensive Care Med 1980;7(1):15—8.

Burfitt SN, Greiner DS, Miers LJ, Kinney R, Branyon ME. Profes-sional nurse caring as perceived by critically ill patients: aphenomenological study. Am J Crit Care 1993;2(6):489—99.

Chaboyer W, Johnson P. Intensive care and beyond: an infor-mation booklet for patients and families. Qld, Australia:Griffith University; 2002.

Chew S. Psychological reactions of intensive care patients. CareCrit Ill 1986;2(2):62—5.

Cochrane I, Ganong LH. A comparison of nurses’ and patients’perceptions of intensive care unit stressors. J Adv Nurs1989;14:1038—43.

Demeyer J. The environment of intensive care patients. NursForum 1967;6:252—72.

Reclaiming the everyday world 199

Easton C, MacKenzie F. Sensory-perceptual alterations: deliriumin the intensive care unit. Heart Lung 1988;17(3):229—35.

Elpern EH, Patterson PA, Gloskey D, Bone RC. Patients’ prefer-ences for intensive care. Crit Care Med 1992;20(1):43—7.

Fontana A, Frey JH. Interviewing: the art of science. In: DenzinNK, Lincoln YS, editors. Collecting and interpreting qualita-tive materials. California: Sage; 1998. p. 47—78.

Granberg A. The intensive care unit syndrome/delirium,patients’ perspective and clinical signs. Unpublished doc-toral dissertation. Sweden: University of Lund; 2001.

Gries ML, Fernsler J. Patient perceptions of the mechanicalventilator experience. Focus Crit Care 1988;15(2):52—9.

Hafsteindottir TB. Patients’ experiences of communicationduring the respirator period. Intensive Crit Care Nurs1996;12(5):261—71.

Hammond F. Involving families in care within the intensive careenvironment: a descriptive study. Intensive Crit Care Nurs1995;11(5):256—64.

Heiddegger M. Being and time. Oxford: Blackwell; 1962. [Mac-quarrie J, Robinson, E, Trans.; original work published 1927).

Hupcey JE, Zimmerman HE. The need to know: experiences ofcritically ill patients. Am J Crit Care 2000;9(3):192—8.

Jablonski RS. The experience of being mechanically ventilated.Qualitative Health Res 1994;4(2):186—207.

Johnson MM, Sexton DL. Distress during mechanical ventilation:patients’ perceptions. Crit Care Nurs 1990;19(7):48—57.

Johnson PL. Being at its most elusive: the experience oflong-term mechanical ventilation in a critical care unit. Un-published doctoral thesis. Qld, Australia: Griffith University;2003.

Jones C, Lyons C. Researching the experience of being criticallyill: some methodological difficulties. Intensive Crit Care Nurs2003;19(6):365—9.

Jones J, Hoggart B, Withey J, Donaghue K, Ellis BW. What thepatients say: a study of reactions to an intensive care unit.Intensive Care Med 1979;5(2):89—92.

Koch T. Rigour in qualitative research: the decision trail. J AdvNurs 1994;19:976—86.

Leininger M. Evaluation criteria and critique of qualitativeresearch studies. In: Morse JM, editor. Critical issues inqualitative research methods. Thousand Oaks: Sage; 1994.p. 95—115.

Logan J, Jenny J. Qualitative analysis of patients’ workduring mechanical ventilation and weaning. Heart Lung1997;26(2):140—7.

Marcus MT, Liehr PR. Qualitative approaches to research. In:LoBiondo-Wood G, Haber J, editors. Nursing research: meth-ods, critical appraisal and utilisation. 4th ed. St Louis:Mosby; 1998. p. 215—45.

McKinley S, Nagy S, Stein-Parbury J, Bramwell M, Hudson J.Vulnerability and security in seriously ill patients in intensivecare. Intensive Crit Care Nurs 2002;18(1):27—36.

Papathanassoglou ED, Patiraki EI. Transformation of self: aphenomenological investigation into the lived experienceof survivors of critical illness. Nurs Crit Care 2003;8(1):13—21.

Parker V. Confronting life and death: living through criti-cal illness and intensive care hospitalisation. Unpublishedmaster’s thesis. Newcastle, NSW; 1997.

Polit DF, Hungler BP. Nursing research: principles and methods.Philadelphia: JB Lippincott; 1995.

Riggio RE, Singer RS, Hartman K. Psychological issues in the careof critically ill respirator patients: differential perceptionsof patients, relatives and staff. Psychol Rep 1982;51(2):363—9.

Russell S. An exploratory study of patients’ perceptions, mem-ories and experiences of an intensive care unit. J Adv Nurs1999;29(4):783—91.

Urdan LD, Stacy KM, Lough ME. Thelan’s critical care nurs-ing diagnosis and management. 4th ed. St. Louis: Mosby;2002.

van der Riet P. The body, the person, technologies and nurs-ing. In: Lawlor J, editor. The body in nursing. Melbourne:Churchill Livingstone; 1997. p. 95—107.

van Manen M. Practising phenomenological writing. PhenomenolPedagogy 1984;2(1):36—9.

van Manen M. Researching lived experience: human science foran action sensitive pedagogy. Albany: State University ofNew York Press; 1990.

Wallis M. Responding to suffering–—the experience of profes-sional nurse caring in the coronary care unit. Int J HumCaring 1998;2(2):35—44.

Walters A. A hermeneutic study of the experiences of relativesof critically ill patients. J Adv Nurs 1995;22:998—1005.