Many articles are written about guidelines, policies, protocols and processes for placing patients in isolation, but less is known about perceptions of the experience of being in isolation by the hospitalised patient. The placement of hospitalised patients in isolation is either done to protect the immunocompromised patient from others (reverse or protective isolation) or to protect others from the patient’s infectious process (isolation) 1. Both situations require limiting the contact between the patient and others in order to prevent the spread of pathogens or to protect the patient who is immunocompromised. The use of isolation is separating ill persons with a communicable disease from those who are healthy to prevent cross-contamination between or among individuals 2. To further clarify, source isolation is segregating the person with an infection or infectious disease to prevent cross-infection2. Protective isolation is protecting susceptible patients from contracting an infection from staff, other patients, or visitors2. Regardless of the type of isolation, the patient’s perception of the isolation experience is critical to creating a nursing care plan that meets the patient’s psychosocial and physical health care needs.
The duration of isolation is difficult to quantify, potentially lasting days, weeks, or months. The CDC describes the duration of isolation as dependent upon the reason for isolation1. For source isolation, the duration lasts until the environment is decontaminated, until time specified after treatment is initiated, or in some cases, the duration will not be known at onset. For the immunocompromised patient with temporary periods of neutropaenia requiring reverse or protective isolation, the duration of isolation is dependent upon the duration of neutropaenia, determined by individual lab tests. In either scenario, the duration of isolation initiates from detection of pathogen or neutropaenia and can last through until resolution of the initial problem.
The patient in isolation is vulnerable to unique stressors resulting from the experience. Isolation includes any form of removing the patient from direct contact with others resulting in limited social contact. While the literature describes a detrimental psychological impact on the patient in isolation, it is not feasible to eliminate isolation procedures in the hospital setting. The nature of communicable diseases and the need to place immunocompromised patients in protective isolation supports isolative treatment plans. Consideration for the holistic care of the patient in isolation necessitates concern not only for the body, but also the mind and spirit. For that reason, nurses require knowledge of not only procedures for placing patients in isolation, but also on the meaning of isolation for the hospitalised patient, in order to plan and provide appropriate nursing care.
Researchers have identified effects of isolation as anxiety, depression, hallucinations, fear, frustration, loneliness, and anger3-6. Research by Catalano et al. 5 identified “…significant negative alterations in mood and anxiety level occur after only 1 week of isolation” (p. 144). Findings suggest that patients in isolation, regardless of the criticality of their illness, demonstrated increased symptoms of anxiety and depression. Gaskill 3 found that patient perceptions from being in isolation included a lack of motivation and disinterest in activities of daily living. The feeling of facing another day in isolation elicited responses of lasting lethargy and depression, negatively impacting recovery. Results from the study indicated that patients receiving nursing care perceived a distinct lack of ‘true presence’ or ‘being with’ the patient. The ability of the nurse to understand and connect with the patient’s meaning and experience on a level that is significant for the patient substantially impacted patient’s perceptions. Additionally, a need for nurses to acknowledge how patients interpret their environment, including the behaviours of staff within the environment, was an important aspect of the patient’s perceived experience. Consequently, nurse awareness, knowledge, and assimilation of actions or interventions associated with ‘being with’ the patient can strongly influence psychological effects of isolation.
The ability of patients to cope with the psychological effects of isolation varied. Gammon4 found that the lack of control over being in isolation directly impacted coping abilities and psychological stressors. Placing the patient in isolation separated the person from their normal habits and routines, disrupting their ability to control their life. Findings suggested that isolated patients experienced the lack of control differently, resulting in varied coping mechanisms. When the lack of control was not acknowledged by health care workers, the patient manifested coping mechanisms as psychological indicators of stress (anxiety, depression, etc.). Collins7 identified that a positive attitude towards isolation emerged when the patient’s unique style of coping was recognised and respected by health care providers. In order to prevent or diminish psychological stressors related to isolation, nurses must be aware of factors that influence the perspective of the isolated hospitalised patient.
Isolating patients with an infectious disease or to protect immunocompromised patients remains a primary treatment in the hospital setting. Isolation procedures consider the person in terms of the disease, but do not respect the holistic mind-body-spirit of the total patient. A need exists to develop a knowledge-base of how the person perceives the meaning of being in isolation to inform the development of proper nursing care for the isolation patient.
An initial review of the Joanna Briggs Institute (JBI) Library of Systematic Reviews and the Cochrane Library was conducted to confirm that no other systematic reviews were completed or in progress on this specific subject. There is a published JBI systematic review that examines the experience of being a neutropaenic cancer patient in an acute care isolation room8. While the systematic review by Lee, Lang, & Tho focused solely on the isolation experience of neutropenic cancer patients, this systematic review considered all patients in isolation, regardless of cause.
The overall objective of this systematic review was to synthesise the best available evidence from the qualitative research literature on the meaning of being in isolation for both protection and as a barrier from the hospitalised patient’s perspective. Specifically, this review sought to determine the patient’s perspective of care delivery in a hospital isolation environment.
What is the hospitalised patient’s experience of being in protective/source isolation?
Types of participants
This review considered studies with a focus on hospitalised adult (> 18 years old) patients in isolation for protection from others or as a barrier to prevent the transmission of infection.
Phenomena of interest
The phenomena of interest consisted of patients’ experience, perceptions and meanings of being in isolation. When available, the “voice” of the patient was included to provide their perspective of being cared for in isolation. The context includes patients in isolation as both a protective measure and as a barrier for cross-infection.
Types of studies
The reviewers considered qualitative studies that reported qualitative data or included a qualitative aspect that explored the patient’s experience of being in isolation, including research consisting of, but not limited to, designs such as interpretive, descriptive-exploratory, observational, phenomenology, ethnography, grounded theory, hermeneutics, participatory action research, and critical theory.
A comprehensive search strategy was designed to identify published, unpublished, and in-press English language studies from January 1971 to May 2010 using the comprehensive search terms identified below. A three-step search strategy was utilised in this review. An initial limited search of MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract and the index terms used to describe the article. A second search using all identified keywords and index terms was then undertaken across all included databases. Finally, the reference list of identified reports and articles was hand searched for additional studies.
The databases searched included:
EBSCOHost Health Source: Nursing/Academic Edition
Elsevier Science Direct
ISI Web of Science
Psychology and Behavioral Sciences Collection
TRIP (Turning Research into Practice)
The search for unpublished studies or grey literature included:
Theses Canada Portal
ProQuest Dissertations and Theses [http://proquest.umi.com/login])
New York Academy of Medicine’s Grey Literature Report
Comprehensive Search Terms
- Barrier isolation
- Protective isolation
- Hospital* and isolation
- Patient and meaning and isolation
- Patient and perception and isolation
- Protective isolation and experience
- Hospital and patient and isolation experience
- Patients in isolation and barrier or protective
- Patient meaning or experience and hospital isolation
Method of the Review
All studies that met the inclusion criteria were selected for retrieval. The studies were then assessed by two independent reviewers for methodological quality prior to inclusion in the review. The review used standardised critical appraisal tools from the Joanna Briggs Institute (JBI), specifically the Qualitative Assessment and Review Instrument (QARI) (see Appendix I). This allowed for the reviewers to determine which studies were of suitable rigour to be included in the review. The two reviewers were experienced nurses and academics, as well as qualitative researchers. Consultation with a third reviewer to resolve any disagreements was available as a contingency but was not required.
Data was extracted from papers included in the review using the standardised data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (Appendix II).
The data extracted included specific details pertaining to the population, phenomena of interest, setting, study methods, and methodologies relevant to the review question and objectives.
Qualitative research findings were pooled using the JBI-QARI software. This involved the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through
assembling the findings (Level 1 findings) rated according to their quality, and categorising these findings on the basis of similarity in meaning (Level 2 findings). Finally, a meta-synthesis was carried out to produce a single comprehensive set of findings (Level 3 findings). Findings were assigned a JBI-QARI level of credibility based on the level of support for the finding within the text.
The meta-synthesis and meta-aggregation processes required the reviewers to read and re-read the text to identify the meaning of the content. Supporting illustrations from the text for each finding were also extracted. Findings from included papers were assigned a level of credibility according to the JBI-QARI analytical module. These levels are:
- Unequivocal (U) - relates to evidence beyond reasonable doubt which may include findings that are matter of fact, directly reported or observed and not open to challenge.
- Credible (C) - those that albeit interpretations, are plausible in light of data and theoretical framework. They can be logically inferred from the data. Because findings are interpretive they can be challenged.
- Unsupported (NS) - when neither one nor two apply and when, most notably, findings are not supported.
The reviewers exercised their judgment in accurately reflecting the summarised findings into a product of practical value. The end result is a set of synthesised findings drawn from the categories that have value in serving the best interests of health care recipients.
Description of studies
Potentially relevant papers identified by the literature search included 1,056, without control for redundancy. After removal of 294 duplicates and review of abstracts, a total of 65 articles were retrieved for examination of the full text paper. Of the 65 articles, 54 were excluded after examination of the full text paper and 11 underwent critical appraisal. 3 papers were excluded after critical appraisal for reasons related to methodological quality (Appendix III). A total of 8 papers were selected for inclusion in the review (Figure 1).
The papers included:
- One grounded theory 9
- Three phenomenological 3, 6, 11
- One mixed-methods10
- Three qualitative descriptive 7, 12, 13
The included papers addressed a variety of perspectives from patients regarding isolation experiences, feelings resulting from being in isolation, and perceptions from hospitalised isolation (Appendix IV).
Qualitative research papers selected for appraisal were assessed by two independent reviewers for methodological quality prior to inclusion. The review used standardised appraisal tools from the Joanna Briggs Institute (JBI), specifically the Qualitative Assessment and Review Instrument (QARI). The two reviewers were experienced nurses and academics, as well as qualitative researchers.
A total of 56 findings were extracted from the 8 eight included qualitative research studies meeting criteria and included in the review. For all qualitative papers we used the JBI QARI levels of credibility for findings: U= unequivocal and C= credible. Unsupported (NS) findings are not included in the presentation of the findings.
Findings and illustrations are listed below.
Paper 1: Exploring the everyday world of the patient in isolation.3
In this paper, Gaskill et al (1997) 3 used an interpretive phenomenological design to explore the patient’s perspective of being cared for in reverse isolation. Participants ranged in age from 19-70 with interviews occurring 2-3 weeks after initial isolation placement. Two investigators conducted interviews in the patient’s room using an unstructured interview format. The interviews were transcribed with random checks for accuracy. The investigators read the transcripts several times before extracting significant statements and identifying themes. Once identified, participants were offered the opportunity to comment on the themes and their interpretations. Reporting included the researcher’s findings.
Finding 1: Participants felt that nurses only understood the patient’s experience of isolation from within their own perspective rather than understanding it from the patient’s perspective (U)
In general, it seemed that healthcare professionals did not demonstrate (or were unable to demonstrate) behaviours indicative of true presencing or being with participants as people in their illness experience. It appeared that care primarily focused on the impact of treatment on patient’s physiological and psychological well-being. Thus, ‘caring for’ in this context is quite distinct from ‘caring about’. Within a nursing framework, caring about patients undergoing bone marrow transplant (BMT) requires that nurses need to acknowledge and learn how patients interpret their environment and the behaviours of staff within that environment (p. 699).
Finding 2: Participants felt less psychosocial effects of isolation when their physiological side effects of treatment were severe and, conversely, more lonely as their physical condition improved (U)
Initially, participants did not find isolation problematic because of the aggressive nature of their treatment and the severe physiological effects that it had on their body. Participants often would reflect on the early stages of the treatment, when they were not bothered by isolation because of their degree of discomfort. With an improvement in their physical condition, however, their isolation for several weeks assumed greater importance for them (p. 696-697).
Finding 3: Having a window was perceived as important in providing contact to the outside world (U)
Although their rooms were several stories from the ground, a window to the outside world initially provided a release from the isolation and boredom. The window was an opening, an avenue through which other lives could be observed and reflected upon (p. 697).
Finding 4: In isolation, small occurrences or happenings taking place around the environment become interesting and take on new meaning (U)
Participants found they took an interest in activities that, until now, had been considered part of everyday life and hardly worth noticing. In between feeling physically ill and, for some, bored or depressed, some spoke of watching the hospital helicopter landing and taking off, watching a cricket match on the field below, or simply looking at the movement of cars in the parking lot (697).
Finding 5: The isolation environment becomes the participant’s world and placement/presence of items take on significance to the participant (U)
Participants remarked on other aspects associated with the room, the television and how its fixed position meant that the only comfortable way of viewing it was sitting up in bed, which meant visitors could not watch it; the fact that the only clock in the room was on the wall behind the patients bed; and the extent to which the over-bed table and the IV stand moved freely (p. 697).
Finding 6: Smells, touch, and sounds become heightened in the isolation environment and are linked with care giving events (U)
Others became aware of the sound of the nurses scrubbing up prior to entering the room. For one patient in particular, the sound became associated with yet another invasion of personal space (p. 697) “The diarrhea, the pain, the working out your fevers, again. Nurses coming in every time you close your eyes. You can hear them scrubbing up then coming in. I mean if you try to go to sleep about 9:30pm, you’re definitely going to be woken up about 11, and that’s if you’re not getting platelets and you’ve had Phenergan and it’s making you go to sleep… I don’t want to complain, but I think I’m just sick of that at the moment” (p. 697).
Finding 7: Participants felt a need for privacy in the isolation environment as well as the need to take control of privacy (U)
Having quiet time with the lights off, requesting that the blinds over the window in their door be pulled, stopping phone calls, and asking that they not be disturbed for a predetermined time were some of the strategies employed. Unfortunately, these requests were either forgotten or overruled on occasion because of equipment alarms sounding or because staff members failed to adequately communicate the patient’s wishes to their colleagues (p. 697).
Finding 8: Coping with isolation is varied, unique, and individualised to each participant (U)
Participants suggested that, despite being in isolation, they were able to cope with their situation or environment. Each had distinctive strategies that kept them going. For some, their religious affiliations were their strength. For others, adherence to different belief systems (e.g., meditation, positive affirmations) was important. For another, logical reasoning, encapsulated in a phrase like things always happen for a purpose and a reason was relevant (p. 697-698).
Finding 9: Participants used different strategies and techniques to ‘face another day’ and need to decide for themselves what their coping strategy would be (U)
Participants tended to view their days, at best, with mixed feelings of optimism or ambivalence, and, at worst, with varying degrees of depression and sometimes frustration that bordered on anger. These feelings likely resulted from a number of factors, not just their isolation. All participants tried various strategies to cope with facing yet another day in isolation and felt it was important that they be the ones deciding how to do this (p. 698).
Finding 10: Even though participants could leave isolation, participants did not take advantage of this opportunity (U)
Although the BMT protocol at the hospital advocated reverse isolation, patients were aware that they could leave their room if they wanted. Knowing this seemed important, yet patients rarely saw this as a viable option (p. 698).
“They don’t make you feel as though you are locked in. I can go outside if I want to but it won’t do me any good” (p. 698).
“… once I was out there I probably wouldn’t want to come back, I’d prefer an exercise bike in here I think”. “I had to put a mask on and didn’t like it. So I prefer to stay in here even though I get bored and try to sleep the time away. I know why I’m here, but I need to get out cause it’s getting comfortable not doing anything” (p. 698).
Finding 11: Participants relied on the presence of family and friends, feeling this was important for their emotional stability (U)
Reliance on ties with family and friends was expressed in one form or another by all participants. Significant others were paramount in the emotional assistance they provided. Just being there often was enough (p. 699).
One patient said that all she needed was the time her mother “just sat there and rubbed my feet” [p. 699).
“…Just being by myself I suppose, and not having my wife around or not being able to talk to anyone first thing in the morning. It’s the hardest thing” [p. 698).
Finding 12: Communicating information about the isolation experiences by nurses helped the participant know what to expect (C)
Most participants believed that the amount of information they were given by the nursing staff about their treatment was adequate (p. 699).
Finding 13: Participants with previous experience in isolation helped with the current isolation (U)
To some extent, one woman’s past experience with BMT and confinement to a single room for weeks on end eased her second journey into this very same situation (p. 698).
One [patient with previous experience] believed that it was important to rest, to “take each day as it comes and try to be more relaxed about things” (p. 698).
Paper 2: Isolation in blood and marrow transplantation6
This study by Cohen et al (2001)6 explored the perceptions of 20 patients ranging in age from 28 to 65 years. Each participant was interviewed once from 1 to 2 hours in length. Open-ended questions were asked and responses were transcribed verbatim. The transcripts were read several times and themes identified. The themes were cross-validated with other researchers until agreement was achieved.
Finding 14: Participants felt dissonance between the desire to protect self and others with a need for caregiver and family support (U).
“I’m more introverted. I don’t want anybody to see me like that. I told my family I didn’t want them to come. I told my friends not to come. So I was basically alone. I didn’t want to be a burden. That was not a good thing to do because I really needed people to come. But I’m just kind of the type that I didn’t want people around me. I want them around me, but I don’t want them to see me like that. I wouldn’t let him (boyfriend) come because a lot of times it was just too scary. He would just start crying. It was too hard for him to see. So I had to go without seeing him. So it was real emotional for me. You probably should encourage the family to visit even if the person says not to. Maybe if I’d gotten more phone calls. When I told them I didn’t want any visitors or anything, it’s like I guess they thought I didn’t want any company or attention at all. So it kind of worked on the bad side for me. I got kind of depressed. I insisted so badly I didn’t want to be bugged, that nobody bugged me” (p. 598).
Finding 15: Nurses who maintained a positive attitude and treated patients like human beings were perceived as making a difference (U).
“The nurses would come in and hold a conversation with you and ask you how you were doing and all that. Get you up to take your shower. Remind you of things, to take your medication. They were very kind. They would be just like a mother to remind you of things that you have to do. Our medication. This is what’s going to happen next. You’re going to receive this type of medication. How do you feel? Do you feel feverish? Do you have a fever? Constantly coming in checking on you. Just gave you inspiration. It’s like wow, you know, I’m really getting looked after. I’m really being cared for. Like I’m her own child and this really helps you” (p. 601).
Finding 16: The processes involved with entering the isolation room detracted staff from entering spontaneously or from responding quickly (U).
“I understood it took them five minutes to scrub up. Of course, they’re not going to come in and out as often as they did before. I feel like I was really flying solo during that time” (p. 596).
Finding 17: Some participants felt the need to protect others from seeing them in a debilitated state (C).
“I don’t think it would be good for my husband to be around all the time because he’s very excitable, and, of course, my children were working. I felt like I’m probably better prepared psychologically than any of them” (p. 597).
Finding 18: When feeling ill, some participants preferred to be left alone (U).
“I am a person who if I’m not feeling good, would just as soon be left alone and crawl up in my own little corner and tough it out. If I have a need I know how to ask” (p. 597).
Finding 19: Participants felt their isolation was a burden, demonstrating reluctance to request assistance or help (U).
“I almost really blew it, because when I started losing my vision, I didn’t tell anybody. I just didn’t want to bug the nurses. They were busy. I didn’t want to be a whiner. I suffered a lot before they put me on a morphine pump. I got to the point where I just could not tolerate [the pain] anymore. And I shouldn’t have done that. And then even still, I didn’t let them put me on a big giant dose. I still suffered” (p. 598).
Finding 20: Participants wanted information given to the family so that the patient would not have to explain the process to them (U).
“I know the nutritional restrictions were explained, but even just instead of me having to do it, the contact with the hospital or the nursing staff to the family would be helpful. You don’t want to say, No, I can’t do that because I’m sick. I want them to have known that it would have been helpful if I had a little bit more assistance and not just assumed my role again after three weeks. Because I couldn’t” (p. 598).
Finding 21: Isolated patients feel an emotional disconnect from significant others (C).
“He was trying to make light of it, hoping that that would make me feel better, but it really didn’t. It made me feel worse because then I felt that he wasn’t right there with me. That I was going through it alone” (p. 599).
Finding 22: Feelings of isolation are sometimes linked to the sense that others do not understand what the participant is going through (U).
“There’s no way you can train [nurses] unless you shave their head, put them in that bed in that little room at the end of the hall for a few days, and put them [in] as it would be if you were in isolation” (p.599).
Finding 23: Participants seeking support from support groups did not always feel they were helpful (U).
“You don’t want to be viewed as the pathetic one that’s going to sit there and say I’m feeling sorry for myself, and so you do the same thing that you do with your family. You go out of your way to be cheerful to show everyone else what a good trooper I am and so you support each other and that’s essentially what the support group becomes. Everybody is so busy trying to be the supportive person, nobody ever takes the time to say, Excuse me I want to sit in the corner and cry. I don’t want you guys to fix my problem. I just want you to acknowledge that I’m sitting in the corner and crying” (p. 600).
Finding 24: Participants felt that another’s presence, regardless of the relationship, broke the monotony of isolation and provided human contact (U).
“Even though I was throwing up, when the nutritionist came in, I perked up because it was a new face to talk to even if it was only for three minutes. It’s not so much lonely as if you’re in there with nothing to do [and] all you have to do is think about how rotten you feel. Whereas if you’re doing something or someone is talking to you, you don’t think about how icky you feel” (p. 603).
Paper 3: Reverse isolation: What patients perceive.7
Collins, Upright, and Aleksich (1989) conducted a qualitative descriptive study to explore the stressors experienced by hospitalised patients in reverse isolation. A total of six participants met the inclusion criteria and agreed to participate in the study. Open-ended audiotaped interviews were conducted on days 3, 7, 12, and 19 of isolation. The tapes were transcribed, analysed for themes individually as well as achieving agreement as a group. Themes were reviewed with participants as a means of confirming the meaning.
Finding 25: The use of media helped participants pass the time regardless of the severity of illness (U)
All cited the TV, VCR, and radio as the most useful forms of entertainment, with three subjects preferring the radio because it required no concentration to enjoy (p. 677). Television and radio were viewed as “extensions to the outside world” (p. 677).
Finding 26: Participants with past isolation experiences or who felt comfortable being alone were better prepared to handle the current treatment (U)
For two of these three subjects, past experiences helped because they were accustomed to being alone (p. 677).
Finding 27: Although participants did not want to be in isolation, they did take measures to prepare for being in isolation (U).
Most subjects brought items for enjoyment or of personal significance into isolation (e.g., books, a radio, weights, needlepoint, photographs of loved ones, good luck cards). Mental preparation ranged from approaching the experience with a positive attitude, preparing spiritually, and talking with a previously isolated patient, to doing nothing, since, “I wasn’t looking forward to it.” Prior to entry, one subject physically prepared for the treatment and the isolation by having dental work done, eating well, and going on long walks. He called this, ‘stockpiling strength’ (p. 677).
Finding 28: Having a window helped some participants feel connected to the outside world (C).
Windows also were important. Half of the patients preferred the outer window view (p. 677). He and two other subjects considered the inner window to the hospital corridor to be the most important, affording contact with staff and visitors who were seen as “part of the outside world” (p. 677).
Finding 29:_Visits by friends and family were viewed as the most important factor towards helping the effects of isolation (U)
All subjects said it was very important to be visited by their main supports, with two subjects noting these visits to be the most critical factor in coping with isolation (p. 677).
Finding 30: When the physical effects of treatment are at their worst, the effects of isolation are viewed as less significant (U)
With time, all subjects found that the physical side effects of the treatment were of more concern than feelings of isolation (p. 677).
Finding 31: The use of routines helped some participants retain control over their situation and pass time (C)
Some subjects made a conscious effort to pass time by maintaining a positive attitude, planning activities, or breaking the day into blocks (e.g., for videos, treatments, or rest). To them, interruption of the routine was annoying because it threatened their control and possibly left them with time on their hands (p. 677).
Paper 4: Feelings of oncology patients about being nursed in protective isolation as a consequence of cancer chemotherapy treatment.9
Campbell (1999)9 conducted a grounded theory study to describe the feelings of cancer patients nursed in isolation. Audio taped semi-structured interviews with five participants were transcribed verbatim then given back to participants to validate the content. Using a constant comparative analysis, the researcher identified substantive codes then examined them for emergent themes. The themes provided the basis for subsequent interviews until no new knowledge emerged. The transcripts were read and reread, then verified by an independent colleague for accuracy.
Finding 32: Dissonance between patients’ physical need for isolation as necessary for treatment and the emotional desire to leave isolation resulted in resignation as something they had to do. (U).
“They (nurses) have offered me the opportunity at night. I haven’t gone yet and I don’t feel I want to until my levels are up. I have spent an, time, an awful lot of time getting here, and I have no wish to knock myself back by picking up a bug. If it means I will stay here longer, I will stay in here longer. I’m not going out that door until I can go out that door” (p. 442).
Finding 33: Personal belief systems were felt to be of significant value in dealing with isolation and treatment (C).
“I think it (religion) helps anyone, but then that’s my personal thoughts. It’s someone to talk to, your own God, Allah, God, whatever you care to call him and it gives you strength and I think I’ve got it. I would hate to do this on my own and I didn’t feel I was alone. For me it’s important. Yes, yes, I’m never on my own. There’s someone out there if I want them. And I do want them (smiling)” (p. 443).
Paper 5: The experience of respiratory isolation for HIV-infected persons with tuberculosis10
In this mixed-methods study by Kelly-Rossini (1996)10, only the qualitative portion relating to how patients describe the experience of respiratory isolation is reported on here. A total of 18 patients from 30-51 years of age participated in the study. The researchers conducted interviews in the participant’s room using open-ended questions. The interviews were transcribed verbatim from audiotapes. The researchers read and re-read the text, identifying significant statements and identifying themes. Thematic analysis was validated by a peer review group of clinicians and researchers.
Finding 34: The isolation either made participants feel lonely or they valued the time alone for reflection about their past and future (U).
“You don’t have anybody to speak with, and then you feel lonely and you start thinking negative things… being lonely is the worst thing in life” (p. 32).
“When people come in I beg them to stay” (p. 32).
“It doesn’t bother me to be alone, I like it peaceful” (p. 32)
Finding 35: The inability to interact with other people and (not) leave the isolation room was troublesome to many of the participants (U).
“It seems like I’m never going to get out of here… I can’t seem to concentrate on much. I turn the radio on and off, on and off… I’m going nuts” (p. 32).
“I feel like I’m going crazy” (p. 32).
Finding 36: Participants reported feeling distressed by interruption of their normal routines such as sleep/wake patterns (U).
“I can’t even eat right, I can’t sleep” (p. 32).
“I can’t sleep good… Somebody’s always coming in to get your blood, get your pressure, take your temperature, so it’s always something you know” (p. 32).
Finding 37: Depressed mood and despair were evident in participants’ discussions about the uncertainty of their own futures, concerns about self and others, and the isolating nature of their present conditions (U).
“I just want to get up, open the door and leave. I get very depressed and I start to cry. Sometimes I just go in the bathroom and cry and cry and cry…I don’t think I can stay here another week. I don’t” (p.33)
Finding 38: Participants felt stigmatised by certain behaviours of staff. They felt very few staff were willing to come into the isolation room and sit with them (U).
“It makes me feel like I’m nothing but a germ” (p.33).
“I’m almost considered a pariah” (p.33).
Finding 39: Many participants felt abandoned by staff (U).
“You worry, what if something is happening to me and they’re going to take a half hour to get here, I’ll be dead” (p. 33).
Finding 40: Participants felt that there were major inadequacies of communication, particularly related to information about their diagnosis and how long they would have to remain in isolation (U).
“I want to know what’s going on with me and when I’m going home. I don’t want to stay forever in isolation. I want to know how long. I’ve been in the hospital for three months already, and I’m going nuts” (p. 33).
Finding 41: Family played an important role in the isolation experience, sometimes a source of anxiety, but offering support, being a coping aid, and a reason to adhere to treatment (U).
“I worry about my son and I worry about my mother” (p.33).
“I really appreciate it when my mother comes over. That helps me a lot” (p. 34).
Finding 42: Participants coped with the experience of isolation by an array of internal and external resources like religion survival strategies learned during incarceration, internal strength (U).
“I’m a believer in the Lord. I believe he’ll pull me through this if I can’t make it myself” (p. 34).
Finding 43: Improved environmental hygiene was identified as important. (C).
“I would like a clean room” (p. 34).
Paper 6: Patients’ experiences of being infected with MRSA at a hospital and subsequently source isolated11
A phenomenology study by Skyman (2010)11 investigating the patient’s experience of source isolation was conducted in Sweden. Six participants ranging in age from 35 to 76 years were included in the study. Interviews with the participants initiated with open-ended questions with reflective questions used to gather additional data. The interviews lasted from one to one and a half hours. The audio-taped conversations were transcribed verbatim, including emotional expressions. The two researchers analysed the text independently several times and coded the data separately. The coded themes were categorised and the researchers discussed the coded themes and categories until agreement was obtained. Only one finding was extracted from this study since only one qualitative aspect of the larger mixed-methodology study related to isolation.
Finding 44: The confining nature of isolation limits the number of visitors resulting in social deprivation and emotional stress (C).
“It was so dull, because they only came when they were going to clean or bring food (p. 103).
Paper 7: An exploratory study on the isolation experience of patients with haematological disorders12
An exploratory study was conducted by Cheng et al (2008)12 on four patients between the ages of 27 and 58 years using open-ended questions on day 3 of isolation. Two sets of guiding questions were used with content validity verified by subject experts. A pilot study was conducted with one participant resulting in no changes to the research methodology. Verbatim transcripts of the audio taped interviews were shown to the participants to verify their responses, and then read and re-read by the researchers to identify and cluster themes. Presentation of data involved paraphrasing the participants’ voices within five categories.
Finding 45: Participants who understood the reason for isolation felt it was something they had to do to get better (U)
Although none of the participants verbalised that they particularly enjoy the isolation experience, the association of being in isolation equates to reducing the risk of contracting opportunistic infections. This made their isolation experience generally more tolerable (p. 20).
Finding 46: Feeling safe, loved, and supported by family significantly reduced psychological effects of isolation (U)
This proposition was demonstrated in the study as the participant with few visits from loved ones found the isolation process a lonesome wait. On the other hand, the rest of the participants were adequately supported and cared for by their loved ones. This might imply that if a patient nursed in isolation felt safe, loved and adequately supported, there could be a significant reduction in the psychological effects of isolation (p. 22). “A caregiver is very important as he or she gave me tremendous support during my isolation. I see no problems in isolation if my family visits me like they did the last time” (p. 21).
Finding 47: Participants coping mechanisms varied with the individual (U)
Despite the similarity in thought of being isolated for their well-being, the participants’ methods of coping were remarkably individualised. It was important to note that no coping strategy was better than the other. There were also coping strategies that were fairly comparable. These included reminding themselves that isolation was beneficial, passing time and looking forward to visits by loved ones (p. 21).
Finding 48: Those participants who had previous experiences with isolation felt better prepared to handle the current isolation (C)
But according to these three participants, having been through isolation had allowed them to be prepared and be aware of what to expect during the present isolation (p. 20).
Finding 49: The presence of media (television, radio, laptop) provided entertainment and escape from isolation (U)
Besides being kept updated by visitors, the media (TV, radio and internet) was the other source that provided the participants with what was happening in the daily events of the ‘outside world’ (p. 21).
Finding 50: Visits by family and friends made the participants feel supported (U)
Visits made by loved ones and friends were important because active support provided by them (visitors) towards the participants illustrated that they were not forgotten (p. 20).
Finding 51: Communication and information about the outside world helped participants feel ‘connected’ (U)
Providing information about daily happenings, continual shared decision making and seeking the opinion of the participants has helped affirmed the participant’s social role outside of the isolation environment (p. 20).
Paper 8: An exploratory study of recipients’ perceptions of bone marrow transplant13
In this paper, Thain & Gibbon (1996) sought to determine the patient’s perception of the process of bone marrow transplant. One key aspect included the isolation experience. Six participants agreed to the audio taped interviews with ages between 31 and 54 years. All participants had previous experiences with bone marrow transplant and isolation. Verbatim transcripts of the interviews were reviewed for latent content analysis, allowing recognition of categories. Reporting of categories related findings to the literature with the investigator’s understanding of the participant’s meaning.
Finding 52: Support by family members helped participants deal with the emotional repercussions of isolation such as the fear of abandonment, emotional stress, and frustration (C)
All informants, except one, acknowledged the importance of the family, especially the spouse, during BMT. The importance of these relationships was not simply related to dealing with protective isolation, although this has been acknowledged above. There is also a possibly more important element of having someone there to share the burden. This does not have to be overtly expressed but it became quite clear during the course of interview that the presence of family members, especially the spouse was a crucial support mechanism (p. 533).
Finding 53: Participants felt that nurses who communicated, interpreted events, and demonstrated ‘presencing’ were important to alleviating isolation stress (C)
Benner & Wrubel (1989) call this ‘presencing’ by the nurse, the acknowledgement of shared humanity and awareness of the patient as a unique person. This in turn will lead to an individual approach to care and ability to recognise what, when, and how patients wanted information delivered during the BMT process (p. 533-534).
Finding 54: Feelings of mortality and death caused participants to complete tasks prior to entering isolation (C)
Thoughts such as ‘I didn’t know if I was going to come out the other end’ were expressed prior to admission or prior to the treatment regime and appear to reflect a genuine uncertainty about the future (p. 532).
“…do as much as you can before you come in, so when you come in you’re not lying there thinking, I wish I’d done this or I should’ve done that” (p. 532).
Finding 55: Isolation is viewed as something that must be done, a necessary step towards achieving the goal of healing or wellness (U)
The first of these steps was acceptance of the reality of isolation because informants realised it had a purpose although the experience was described as claustrophobic (p. 533).
Finding 56: Frustration emerged from being separated from the outside world; increasing as time to discharge became closer (U)
At this time, isolation appears to represent a barrier to be crossed on the way to discharge, but there is also an increasing desire for re-engagement with the outside world (p. 533).
“I just couldn’t wait to get out, I thought, I’ll have to get out of there or I’ll crack up completely” (p. 533).
Categories based on findings from qualitative research papers
The findings from the qualitative papers were examined to identify common themes. A total of 56 findings were analysed to produce 11 categories. The authors independently explored the findings then discussed the categories until consensus was reached. The following categories resulted from the analysis:
- Patients demonstrated a myriad of ways of coping
- Need for reliable knowledge
- Emotional reactivity; depression and despair
- Social deprivation leading to boredom and loneliness
- Barriers and facilitators to nurse-patient interactions and communications
- Family, significant others, and visitors’ support
- Accepting the reality of isolation
- Dichotomy of aloneness
- Physical environment leads to confinement
- Isolation causes changes in sensory perception
- Previous experience with isolation helped with current experience
Synthesised findings based on categories
The categories were analysed to form synthesised findings that reflected a consideration of all categories and findings. Two synthesised findings emerged from the synthesis of the categories.
Meta-synthesis 1: Fractured human connectivity
The isolation experience causes fractured human connectivity and nurses must provide care that mitigates the negative effects.
Disengagement of consistent human connections from others causes gaps in needed knowledge, emotional support, and perceptions of self-esteem. A total of 24 findings were grouped into 5 categories, which formed the first synthesised finding. The first category related to the loss of social contact. The second category included the need for knowledge about the reason for being in isolation as well as the processes involved with the isolation experience. The third category consisted of factors that were both a barrier and facilitator to nurse-patient contact and communication. The fourth category involved the patient’s need for support from family, friends, significant others and visitors during the isolation experience. Finally, the fifth category, physical environment leads to confinement, encompasses how the environment contributes to feeling isolated from others. These five categories were synthesised into the first synthesis statement, ‘fractured human connectivity’.
Meta-synthesis 2: Adaptation to an artificial environment
The nurse must attend to the reality that a variety of factors affect the patient’s adaptation to an artificial environment.
The isolation experience calls for patients to cope and adapt to an environment that is both restrictive and stressful. The ability to adapt varies among individuals as does their emotional response. The second synthesis was derived from 32 findings that formed six categories. Coping mechanisms of those in isolation were varied and highly individualised, as were the emotional responses evoked from being in an isolative environment. Patients yearned for others yet, at the same time did not want to burden others, resulting in conflicting emotions. Previous experience with isolation, whether it be in the hospital or in another environment helped those with the current experience. Feelings of having to be in isolation to get better were found throughout the studies and led to the fifth category, accepting the reality of isolation. Finally, changes in sensory perception involved how sights, sounds, and smells took on heightened awareness during the isolation experience. These six categories converged to create the synthesis statement, ‘adaptation to an artificial environment’.
Meta-synthesis 1: Fractured human connectivity
Isolation results in disengagement of consistent human connections, including caregivers, family, friends, nurses, physicians, and others. Health care clinicians need to recognise that the isolation experience is as much about meeting patients’ psychosocial needs as their physical needs. This is accomplished through fostering therapeutic relationships with the patient and their significant others.
The findings indicated that isolated patients lacked consistent human contact, resulting from the isolative nature of treatment. Health care workers attend to the tasks of providing care rather than implementing holistic interventions such as understanding the effect of isolation on the patient’s psychosocial status, listening to the patient, or sitting and being with the patient. Nursing care tended to be limited to basic needs due to the psychological assistance and supportive care necessary for such patients.
Narratives suggest nurses are ill-prepared to handle the psychological needs of the isolated patients and revert to basic interventions based on biophysical needs. This type of nursing care often led patients to express feelings of disconnect with the nursing staff. Compounding this feeling was the preparatory time required for nurses to enter the isolation room, including donning protective clothing. Some narratives identified that protective clothing (gowns, gloves, mask) affected the ability to make contact with others. Time constraints were also noted from the nurse’s perspective including the pressures of providing care to multiple patients on an assigned team, limiting the time available to care for the psychological needs of the isolated patient.
Meta-synthesis 2: Adaptation to an artificial environment
The isolation experience calls for patients to cope and adapt to an environment that is both restrictive and stressful. The ability to adapt varies among individuals, as does their emotional response. Health care clinicians should assess the coping mechanisms and emotional responses of patients during the isolation and intervene in a way that helps them to manage and adapt to the experience
Patients experience isolation and adopt coping mechanisms individualised to their needs. Patients felt that their individual autonomy, i.e. ability to make self-determined choices, was limited while in isolation. Selection of coping mechanisms is both a conscious and subconscious action, influenced by internal and external factors. The limiting effect of isolation compromises the selection of coping mechanisms by restricting available choices and individuality. Externally, patients responded to their physical environment including the cleanliness, location, presence/absence of windows, and placement and types of items within the room. Internally, isolated patients’ feelings of the experience ranged from not minding the time alone to intense dislike of the experience. The majority of studies identified that the ability of family and/or significant others to provide support and comfort was a primary coping mechanism.
Isolated patients felt that a better view onto the ward or the outside world would reduce feelings of confinement, even though windows onto the corridor would only have given a view of staff walking past. Although their rooms were several stories from the ground, a window to the outside world provided a release from the isolation and boredom. The window was an opening, an avenue through which other lives could be observed and reflected upon. Boredom compounded the stress of isolation. Patients reported the presence of diversional activities helped ameliorate boredom. The presence of media (televisions, radios, internet) helped redirect patients from thinking about being in isolation to ‘entertainment’ to help take their mind off their situation.
Limitations of the Review
Limitations of this review include the design of the studies including the general lack of authentic patient voice. Some studies relied on the researcher’s perception of meaning without being validated by participant’s voice. Every effort was made to identify and include pertinent studies. Studies conducted since this review was initiated were not included. Performing an update in the future is suggested to identify and include new research on this topic.
Isolation, both protective and source, is necessary for treatment and recovery of certain patient populations. Patients choose to be treated but may not understand the full meaning of treatment when it includes isolation, requiring knowledge to develop an understanding of the isolation environment. The patient in isolation is, in essence, temporarily residing in an artificial environment, removed from the normalcy of their lives and stripped of control, all in order to undergo treatment. The experience of being in isolation by hospitalised patients causes severe limitation or loss of self-determination and autonomy. In essence, the patient electing to undergo treatment is also relinquishing their autonomy for a limited period of time. By its nature, isolation also causes patients to experience limited contact with others including health care professionals, family, and significant others. Limited contact causes feelings of abandonment, resulting when healthcare workers allow isolation to become a barrier to viewing the patient as a person with unique needs.
Implications for practice
From the review and syntheses, several recommendations for practice emerged, presented as two distinct areas; prior to and during isolation.
Prior to isolation:
- Provide competency training for nurses that enhances ability to identify psychological needs of the patient rather than nurses’ perceived needs of the patient.
- Prior to and during isolation, provide information such as what to expect, what it might be like, and take note of patients’ preferences for diversion.
- Create a plan with the patient’s input for routine preservation to include medication times, blocks of time for patient assessment, ancillary services on a set schedule when possible, and to preserve family time.
- During isolation, prepare patient and family for discharge, ask what information they need, clarify understanding.
- Identify and acknowledge individual patient’s coping style by incorporating this into the plan of care (pastoral care visits, family time, taking 15 minutes to play a game of cards, etc.).
- Assignment of nurses to an isolated patient should be consistent to encourage sustained nurse-patient connections and knowledge of individual patient preferences, needs, and wants.
- Decrease patient load for nurses with an isolated patient on their team, allowing for time needed to prepare for entering the room and increased opportunities for nurses to spend more time with the isolated patient.
- Isolation rooms should have windows to the outside with blinds; clocks, radios, and televisions placed where the patient can see; and internet accessibility.
- Consider social time between family, friends, significant others and the patient to be a priority.
Implications for research
The general paucity of research warrants further study on the meaning of being in isolation from both the patient’s and nurse’s perspective. Comparison studies between the nurse’s perceptions of care given against the patient’s perception of care received would provide valuable insights. Development and application of structured training for nurses and other health care workers to attend to the psychosocial care needs of isolated patients and to identify key training components is indicated. Subsequently, the impact of such programs on the ability of nurses to meet the isolated patient’s psychosocial needs warrants further research.