Intensive care and beyond: improving the transitional experiences for critically ill patients and their families☆

Article Outline

• Introduction
• Conceptual underpinnings of the research
• Following the path of ICU survivors (Chaboyer and Grace, 2003)
• Health status of ICU survivors (Chaboyer et al., 2002a)
• Caregiver burden (Foster and Chaboyer, 2003)
• Understanding the ICU transfer experience (Chaboyer et al., 2005b)
• The ICU liaison nurse (Chaboyer et al., 2004a)
• Evaluation of the role of the ICU liaison nurse
  • Impact on patient and family anxiety
  • Impact on health service delivery (Chaboyer et al., 2006)
  • Impact on ICU nurses (Chaboyer et al., 2002b, 2004b)
  • Impact on ward nurses (Chaboyer et al., 2005c)
• Conclusions
• References
• Copyright

“Without understanding a greal deal about how the chronically ill get through their days outside of health facilities, health personnel will never understand what they really need to know in order to give effecive care at the facilities—and to ensure that the patients will not return more quickly than they should.” (Straus, 1977, p. 6)

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Introduction 

Critical illness or injury often occurs suddenly, without warning, and requires one to one care from specially trained nurses. In 2002, there were approximately 137,000 patients admitted to Intensive Care Units (ICUs) in 171 Australian hospitals (Higlett et al., 2005). About 90% of the patients will live through their ICU experience, with more than 75% surviving to hospital discharge (Higlett et al., 2005). Conservative estimates suggest an ICU bed costs more than $3,000 per day (New South Wales Health, 2002), one reason that intensive care has also been termed ‘expensive care’. However, because ICU beds only comprise about 2.5% of all hospital beds (Higlett et al., 2005), a lack of space for the critically ill is an everyday concern for many ICU managers. Thus, there is a need to ensure that once these specialist services are no longer required, timely transfer to the ward occurs. The focus of my research has been on the transitions ICU patients and their families face when they are discharged from ICU and on the provision of nursing services to ensure continuity of care during this time.

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Conceptual underpinnings of the research 

The term ‘transition’ is well known and has been described by anthropologists, psychologists and nurses. Early work by anthropologists on the ‘rites of passage’ suggested that this transition was a process of separation, change and incorporation. Since the 1980's American nursing scholar Meleis has examined health transitions from a nursing perspective. She has defined it as “a passage or movement from one state, condition or place, to another” (Schumaker and Meleis, 1994, p. 119). This definition is simple, easy to understand, and congruent with every day use of the term. We have come to understand that health transitions are both complex and multi-dimensional and require individuals to incorporate new knowledge, alter their behaviour, and change their definition of ‘self’ in the social context (Elmberger et al., 2000).

ICU patients face a number of health transitions from the time they enter hospital to when they return home to convalesce (Chaboyer et al., 2005a). When patients are critically ill, both they and their families have a range of experiences that are generally foreign to them. As their condition stabilises, they often become more aware of their condition and surroundings, and their families are adjusting to foreign sights and sounds of the ICU. By the time patients are well enough to be transferred to the ward, they are developing an understanding of how sick they have been. Numerous studies have demonstrated that the constant presence of ICU nursing staff helps both patients and their families feel ‘safe’ during such an uncertain time (see for example, Stein-Parbury and McKinley, 2000). However, once patients are stable and begin to develop an appreciation of their condition and surroundings, they are transferred to the ward. And, when they are well enough, they are then discharged home; however, they rarely return home in the condition they left. Because these transitions occur relatively quickly, there is little time for patients to prepare for and adapt to them.

‘Continuity of care’ is a term that has been used to describe the provision of timely care across a number of health services (Crilly et al., 2006), for example, from the ICU to the ward and from the ward to home. For nurses to ensure continuity of care occurs there must be an understanding of what has ‘come before’. If there is no such understanding, there is the potential for ‘discontinuity of care’ and patients and their families may miss out on crucial aspects of care they require. Not only is there a growing body of knowledge about ICU patients’ experiences and transitions, there is also evidence that dis-continuity of care occurs. The body of work I present has focused on understanding patients and families experiences of their health transitions and on the provision of nursing services to promote continuity of care for these individuals.

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Following the path of ICU survivors (Chaboyer and Grace, 2003) 

Historically, ICU nurses have wondered what happens to patients once they leave the unit but have lacked the involvement post ICU care required to gain an understanding of patient progress. However, recent interest in continuity of care has meant a much closer and rigorous examination of the illness trajectory for these critically ill patients and nursing staff have now begun to recognise that a stay in the ICU has long-term implications for the patient and their family. Led by Michelle Foster and Joy Grace, nursing staff in the ICU at the Gold Coast Hospital began a quality activity that shed light on the long-term outcomes of their patients, and, as a visiting research fellow in the unit, I was invited to be part of this work (Chaboyer and Grace, 2003). In a three-year period (1998–2000), we undertook semi-structured telephone interviews with 222 long-term ICU patients who had been in ICU for almost 13 days on average. During interviews, individuals were questioned about their physical condition such as mobility, activities of daily living, energy levels and sleep. In total, at least 40% of participants required assistance with some of their activities of daily living in the first year. Over half reported a weight loss and lack of energy with about a quarter stating they felt ‘depressed’. Interestingly, whereas a third worked full-time prior to their ICU admission, less than 10% were working full-time a year later. Because of the nature of the sample and data collection, we recognised that the information gain from this quality activity could not be generalised to other groups. However, it did signal that these patients may face long-term problems and led us to a more formal study of the health status of ICU survivors.

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Health status of ICU survivors (Chaboyer et al., 2002a) 

The importance of health-related quality of life (HRQOL) as a relevant outcome measure for patients requiring ICU management has only recently been recognised. A better understanding of how this expensive service affects the health and well-being of its survivors will allow nurses and other health care professionals to plan for and provide appropriate follow-up care. A systematic review of the theoretical basis and instruments used to measure HRQOL was undertaken and findings from recent studies of the quality of life of ICU patients reviewed (Chaboyer and Elliott, 2000). The review identified that ICU survivors generally have poorer HRQOL scores 6–12 month after ICU than during their pre-admission period. They also have lower HRQOL than the age-adjusted general population. Despite this apparent poorer state of health, participants often claimed to be satisfied with their HRQOL. However, no Australian studies were found which led us to undertake our first small HRQOL study.

Michelle Foster, Julia Creamer and I then conducted a small pilot study of the health status of patients in 1999/2000 in order to gain a sense of the issues faced during recovery and to assess the feasibility of a larger, longitudinal study (Chaboyer et al., 2002a). This pilot was important because one major issue faced by researchers planning longitudinal research, or studies that follow participants over time, relates to the fact that participants may ‘lose interest’ in the research and drop-out. Related to this, over time researchers may be unable to locate willing participants. An additional issue faced by those researching the ICU population is that some patients may be unable to participate in research due to their physical condition. In some instances, proxy respondents may be used however the researcher must always consider whether proxy responses will be accurate. In order to address these issues prior to a larger study, a pilot study was undertaken and recruited 20 patients and 20 next-of-kin ‘proxies’. They were surveyed at four time points, during hospitalisation to gain a ‘retrospective’ understanding of their health status prior to hospital, and at one, six and twelve months to identify their current health status.

Fig. 1 displays the results of the patient responses and identifies that initially, both the physical domains (functioning, role, pain and general health) and mental domains (vitality, emotions, social and mental health) were significantly decreased, however by one year, many report that their condition has improved, but generally not back to their pre-ICU status. Proxies were surveyed at one time point and their responses compared to patients. The research demonstrated that there was reasonably good correlation between next-of-kin proxies and patients for the physical domains, but the same was not true for the mental domains suggesting that proxy responses were not accurate and thus should not be used. At 12 months some participants declined to participate, others could not be found and some had died thus only 11 participants (55%) completed the survey. When ‘loss to follow-up’ is greater than about 20% research findings may not be viewed as credible. Thus, for a number of reasons we did not pursue a larger study including the fact that a number of other large-scale studies on the health status of ICU survivors were published. However, one serendipitous finding was that family members asked if they could tell us about the toll this experience had on them, thus we began planning for a study of family carers.

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• Figure 1. 

  Health status (SF-36) of ICU survivors.

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Caregiver burden (Foster and Chaboyer, 2003) 

Family members often fulfill an informal caregiver role to ICU survivors who are still convalescing. However, these roles can be demanding and stressful, and because about 2/3 of ICU patients are male, the majority of carers will be female, who may have other ‘caretaking’ roles. Prior to conducting a formal study of caregiver burden, under the leadership of Trish Johnson, Michelle Foster, Roz van der Vooren and I undertook a synthesis of the literature, focusing on the ICU population (Johnson et al., 2001). This review identified that there were very few studies focusing on ICU patients, however one study revealed that only 15% of carers received community support and 75% of carers were hesitant to ask for assistance even when it was needed. A second study demonstrated that there was an association between caregiver burden and both depression and financial strain.

Given this paucity of research, Michelle Foster and I planned a caregiver burden study. The aim of this study was to measure the burden associated with caring for a family member who had been critically ill. Seventy-one family carers, 51 females (72%) and 20 (28%) males of long-term intensive care patients completed a mailed survey three months after ICU discharge (Foster and Chaboyer, 2003).

The amount of time caregivers spent caring was considerable, on average 36.9h per week (Foster and Chaboyer, 2003). The vast majority (n=59) did not use nursing services after discharge and about 60% (n=43) of the caregivers did not use family and friends to assist them in caring. Male carers received significantly more assistance than female carers (9.5h as compared to 1.6h). Carers reported a very low level of health service use including general practitioners, community nurses, paid nursing assistance and hospital services. These findings helped us understand that some families of ICU survivors are required to invest a significant proportion of their time to the carer role, and that they do not access health services in this role.

A related unpublished study Michelle Foster and I conducted examined the relationship between health status and caregiver burden in patient family dyads. At three months post-ICU we surveyed a group of 31 patients who required assistance and their family carers. This small study demonstrated a strong association between health status and carers’ perceived burden in terms of the time it took, the physical care and their personal commitment. While we believe there is significant work to be done in this area, patients and families began telling us that many of these issues had their origins in the hospital, which led us to return our research to the hospital environment.

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Understanding the ICU transfer experience (Chaboyer et al., 2005b) 

Transfer out of the ICU has been identified as one of the most stressful aspects of the ICU experience for patients and families alike. If nurses are to assist patients and their families with this transition, they must first have an understanding of the experience. Thus, in order to gain such an understanding of the ICU transfer experience, focus group meetings were held with ICU patients and their families (Chaboyer et al., 2005b). The four themes that emerged from the focus group discussions provided an important insight into the experiences of patients and their families as they made the transition from ICU to the ward, highlighting the complex and highly emotional nature of the experience. These themes included (1) a sense of sudden abandonment, (2) pervasive feelings of vulnerability and helplessness, (3) feelings of unimportance and (4) an ambivalence about the experience (or the presence of both positive and negative emotions). This understanding, and subsequent interviews focusing on the ICU transfer process conducted with ICU and ward nurses helped us develop a new, advanced practice nursing role, that of the ICU liaison nurse, whose role was to assist patients and families in their transitions to the ward and home and to promote continuity of care for this group.

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The ICU liaison nurse (Chaboyer et al., 2004a) 

The ICU liaison nurse role is an example of an advanced practice (AP) role in nursing. About 40 countries world-wide, including Australia acknowledge the AP role. The International Council of Nursing (ICN) defines the AP Nurse/Nurse Practitioner as a “RN that has acquired an expert knowledge base, has complex decision making skills and clinical competence for extended practice” (ICN www.inc-apnetwork.org). A Canadian group of researchers have demonstrated that important processes undertaken by the AP nurse include (1) provision of comprehensive care, (2) ensuring continuity of care, (3) coordination of care and (4) provision of timely services (Sidani and Irvine, 1999). They have also developed a model that can be used for evaluating AP nursing, termed the Nursing Role Effectiveness Model (Sidani and Irvine, 1999). This ‘structure process outcome’ model has been used as a guide for our research.

As part of the development, implementation and evaluation a new AP nursing role at the Gold Coast Hospital, that of the ICU liaison nurse role, Michelle Foster and I undertook a qualitative study of the context and activities undertaken by all known Australian ICU liaison nurses (Chaboyer et al., 2004a). Previous literature suggests that outreach services in the UK may have developed for three reasons. First, patients were leaving ICU ‘quicker and sicker’ and as a result, required complex care during their ward stay. Second, ward nurses did not always have the knowledge, skills or time to provide such care, thus patients were at risk of deterioration and adverse events. Third, it was thought that the psychosocial trauma faced by these patients and their families on their transition to the ward might be lessened by support and contact with specialist nurses who have an understanding of the ICU experience. Whether this applied to the Australian context was unknown.

Using a naturalistic approach, semi-structured in-depth interviews were conducted with the six known Australian ICU Liaison Nurses and thematic analysis was undertaken (Chaboyer et al., 2004a). The findings are displayed in Table 1. The roles developed because of both service demands and the professional interest of the staff. Activities undertaken by these advance practice nurses included staff education and support, ward liaison, patient care and support and family education and support. While all liaison nurses described similar activities, the local hospital context dictated the extent to which they spent time on any one activity. Additionally, there was no pattern of service delivery with some sites offering Monday to Friday service 8h per day and others seven day service with 10–12h per day.

Table 1. Domains, categories and examples of the liaison nurse

Interestingly, while most of the participants described collecting audit data, no formal research on the structures, processes and outcomes of the role had been undertaken. Thus, in planning for the implementation of the ICU liaison nurse at the Gold Coast Hospital, we adopted a strong focus on evaluation.

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Evaluation of the role of the ICU liaison nurse 

Impact on patient and family anxiety 

The role of the ICU liaison nurse at the Gold Coast hospital was developed to focus on (1) providing psychosocial support of patients and their families, (2) improving discharge processes and (3) offering clinical support to ICU and ward nurses. A block intervention study was designed, with the first control and intervention periods followed by a wash-out and then a second period of control and intervention (sometimes denoted A, B, A, B). The hypothesis that the liaison nurse would decrease transfer anxiety experienced by both patients and families was tested as part of this study (Chaboyer et al., submitted). The state component of the State-Trait Anxiety Inventory (STAI Form-Y) was used to measure anxiety quantitatively and focus group interviews were used to understand the transfer experience qualitatively, both before and after the implementation of the liaison nurse. There was no measurable improvement in anxiety; however, two trends became evident. The control group had scores similar to the norms for patients in general medical wards in hospitals and the intervention group had scores similar to the general population norms. Two factors may account for these findings including a small sample size, the timing of the actual data collection.

Interestingly, the findings from the qualitative component paint a different picture about the liaison nurse's effect. Table 2 contains the themes that arose from the analysis of this data and clearly demonstrate that transfer facilitated by the liaison nurse was associated with much more positive experiences (unpublished results).

Table 2. Transfer experience major themes

Impact on health service delivery (Chaboyer et al., 2006) 

One major focus of the liaison nurse role was on improving the ICU transfer process. Due to the recognition that ICU beds are in short supply and that timely discharge will result in better bed management, ICU discharge delay was studied (Chaboyer et al., 2006). Similar to an American study (Perlmutter et al., 1998) ICU discharge delay was defined as the time between when a patient was deemed medically ready for discharge to the time when the patient physically left the unit. A total of 186 patients (101 control and 85 intervention) were included in the study. In total 22% (n=40) experienced a discharge delay of 4h or greater, 30% (n=30) of patients in the control group and 12% (n=10) in the intervention group, a statistically significant finding, even after controlling for a number of demographic and clinical factors. Stated another way, using odds ratios, the control group were 3.2 times more likely to experience a delayed discharge. Given the costs and shortages of ICU beds, and the shortage of ICU nurses, initiatives such as the liaison nurse may assist in improving health service delivery.

Impact on ICU nurses (Chaboyer et al., 2002b, Chaboyer et al., 2004b) 

The liaison nurse undertook a number of activities aimed to assist ICU nurses in their ability to prepare patients and families for transfer from ICU and discharge home. As such, both prior to and after the implementation of the role, 58 ICU nurses completed a survey on their perceptions of discharge planning (Chaboyer et al., 2002b, Chaboyer et al., 2004b). Table 4 provides a sample of responses to the 21 items on the survey. Significant improvements were noted on most items. It appears that the liaison nurse was positively able to influence ICU nurses perceptions of their role in the ICU transfer and hospital discharge process (Fig. 2).

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• Figure 2. 

  ICU nurses perceptions of discharge planning.

Impact on ward nurses (Chaboyer et al., 2005c) 

While the liaison nurse role was designed to also support ward nurses, some authors have suggested that such roles have the potential to actually deskill ward staff and leave them feeling inadequate in their ability to care for patients. Thus, part of the evaluation of the ICU liaison nurse focused on ward nurses’ perceptions of this new role. A total of 10 ward nurses who had experience with the ICU liaison nurse were interviewed individually (Chaboyer et al., 2005c). Two main themes emerged from the analysis and reflected the ward nurses’ assessment of the roles a clinical liaison and its outcomes. In summary, this evaluation demonstrated that the ICU liaison nurse has had a positive influence on critically ill patients and their families experience of ICU transfer, was beneficial for ICU and ward nurses and improved the ICU discharge process (Chaboyer et al., 2005c). Currently, many Australian hospitals are adopting the role, despite the fact that no ‘hard evidence’ of the impact on patient outcomes is available, nor is the cost-benefit ratio of this service known.

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Conclusions 

Understanding patients’ and families’ experiences can provide a foundation for improving nursing services. The ICU liaison nurse is one example of an advanced practice role that may improve patient outcomes, service delivery and staff skills. Numerous individual studies of a variety of ICU practices have been undertaken, but without a programmatic focus to research, clinical practice will be slow to respond to research findings. Importantly, collaborations between the university and hospital sectors results in clinically important research questions being pursued. The results of such research will likely improve patient care and outcomes and help develop the discipline of nursing.

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