The long-term ICU patient: Which definition?

AIMS AND OBJECTIVES: To offer a review of the differing terminologies used by clinicians and researchers to describe the long-term intensive care unit (ICU) patient and the underlying propositions that align with this terminology. BACKGROUND: Ongoing medical and technological advances in emergency and intensive care have resulted in improved survival of critically ill patients in recent decades. In addition, these advancements have also resulted in improved survival of complex critically ill patients who progress to a trajectory of prolonged critical illness, having protracted stays in the ICU. There is great variability in terminology used to define the long-term ICU patient. This lack of a common definition for long-term ICU patients is problematic, increasing their vulnerability and risk of care not being centred about their unique needs. DESIGN: In this discursive article, we explore the terminology used to define the long-term ICU patient. An initial broad search of the literature across four electronic databases was conducted to identify common terminology used to define the long-term ICU patient. From here, seven definitions were identified and chosen for inclusion in the review as they meet inclusion criteria and clearly described a group of patients who have an extended ICU stay. The seven selected terms are as follows: prolonged mechanical ventilation; failure to wean; insertion of tracheostomy; chronically critically ill; persistent critical illness; persistent inflammatory-immunosuppressive and catabolic syndrome; and frailty. Following this a focused review of the literature with the selected terms was conducted to explore in greater detail the terminology. DISCUSSION: The lack of clear definition for this patient group can potentiate their care needs being unmet. Acknowledgement of the need to clearly define this patient group is the first step to improve outcomes. Nursing is well positioned to recognise the different terminologies use to describe this group of patients and implement care to suit their unique clinical characteristics. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Recognition and standardisation of these terms are an important priority to pave the way to improve care pathways and outcomes for this group of patients and their family.

Experiences of carers of youth, adult children and spouses with ME/CFS.

OBJECTIVES: The debilitating nature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) means that family members often take on a caring role. This study compared the experiences of people caring for three groups: youth, young adults, spouses. METHODS: An opportunistic sample of 36 carers completed an online survey of open-ended questions asking about their experiences. Thematic analysis was used to consider the three sets of responses separately and Thematic Comparison was used to identify points of connection and disconnection across the sets. RESULTS: The themes identified were very similar to those identified in past studies. Two super-ordinate themes were identified: "Lack of knowledge and understanding" and "Holistic Impact". Though most sub-ordinate themes were evident across all three groups, important differences were found. The sub-ordinate themes "Caring Blindly", "Emotional and physical health cost", and "Impact on the whole family" were more evident amongst carers of youth while the theme "Worry for the future" was more evident from carers of young adults and spouses. DISCUSSION: Differences seemed to be related to both the time since diagnosis and the life stage. A longitudinal study would help to understand how carer experiences change over the life course of caring for someone with ME/CFS.

Nurses' experiences of caring for patients during a prolonged critical illness.

BACKGROUND: The literature regarding nurses' experiences of caring for chronically critically ill (CCI) patients is scant, however, there are subtleties within the literature, identifying nurses are often challenged providing care to this patient group. This can lead to feeling frustrated, lack of control, and distress. AIMS AND OBJECTIVES: As part of a larger study, this paper reports nurses' experiences of caring for patients during a prolonged critical illness in the intensive care unit (ICU). DESIGN: A longitudinal, qualitative, instrumental, multi-case study consisting of six cases from four New Zealand ICUs was conducted. Theoretical underpinnings were informed by the Chronic Illness Trajectory Framework. The principles of consolidated criteria for reporting qualitative research were applied in reporting the methods and findings. METHODS: Patients, family members, nurses, and other health care professionals constituted the participant groups in the larger body of work. Data were collected from observations, conversations, interviews, and document review. Data were analysed by identifying themes, developing vignettes, and trajectory mapping. RESULTS: Nurses' experiences of caring for CCI patients in the ICU can be framed by a prolonged critical illness trajectory that is unpredictable, problematic, and prolonged. Nurses experienced distress in one of the phases in the trajectory because of uncertainty about a positive outcome for the patient related to multiple complications, with anxiety, delirium, and the suffering they witnessed. Nurses were frustrated and challenged to meet all the patient's needs because of the many tasks they needed to complete over the shift. CONCLUSION: Understanding the trajectory of a prolonged critical illness from the perspective of nurses, allows for challenges to be identified and is the first step in improving practice through the education of nurses. RELEVANCE TO CLINICAL PRACTICE: Understanding the challenges posed by caring for CCI patients will assist in improving their interactions and prioritizing their care for nurses.

Chronic conditions in the community: Preventative principles and emerging practices among Maori health services providers.

ISSUE: The pressing chronic conditions prevention needs of Maori (the Indigenous peoples of Aotearoa New Zealand) are yet to be adequately addressed using mainstream approaches. This study investigated how Maori health service providers (MHSP) are positioning themselves to better meet the chronic conditions prevention needs of Maori. METHODS: Kaupapa Maori methodology underpinned a three-phase research project that investigated three Maori health service provider-based chronic conditions prevention cases, in different regions of Aotearoa New Zealand, using an instrumental case study design. Two small group interviews with seven participants and 44 individual key informant interviews were conducted. All participants were associated with one of the three MHSP. Document reviews and observations were also carried out. Following the identification of a prevention case study, within each provider, in-depth investigation of prevention practices was undertaken. RESULTS: Achieving well-being through health service delivery is challenging for the three providers which are largely reliant on state funding to support their work through defined contract outputs. The drivers of service delivery norms impacting providers include the dominant medical conditions focused discourse and addressing the high levels of acute need characteristic of provider communities. There are examples of shifts in organisational structure and delivery configurations that demonstrate challenging and reframing these norms. We identified emerging approaches to prevention that move beyond being "the ambulance at the bottom of the cliff" to "building a fence at the top." CONCLUSION: Consolidation of provider prevention approaches, increased resources and a broader health services systems level response that prioritises prevention are required. SO WHAT?: MHSP are reframing services to better meet the well-being needs of the communities they serve.

A qualitative multicase study of the trajectories of prolonged critical illness: Patient, family, and healthcare professionals' experiences.

BACKGROUND: Contemporary intensive care enables many critically ill patients to survive their initial illness; however, a small group of patients require a protracted stay in the intensive care unit (ICU), experiencing many complications throughout their illness. It is only when we understand the total illness experience from patients' and families' perspectives, as well as the complexity of care for healthcare professionals, that we can fully engage in developing services and promoting evidence-based practice to improve broad health outcomes and experiences for all groups. OBJECTIVE: The objective of this study was to explore the trajectories of a prolonged critical illness in an ICU from the experiences of the patient, their family, and the healthcare professionals who provide care. METHODS: This was a longitudinal, qualitative, multicase study of six cases from four New Zealand ICUs. Theoretical underpinnings were informed by the Chronic Illness Trajectory Framework. Each case consisted of the patient, their family members, and nurses and other healthcare professionals who provided care. Data collection methods included observations, conversations, interviews, and document review. Data were analysed using thematic analysis and trajectory mapping. RESULTS: Regardless of the patient's admitting diagnosis, the trajectory of a prolonged critical illness is made up of common phases, determined by the patient's physiological condition. However, all subphases represented different psychosocial needs. The patients' debilitated state made them susceptible to complications and added to the complexity of their trajectory. The family's trajectory was informed by the patient's trajectory, and uncertainty dominated throughout. Each phase of the illness presented different challenges for healthcare professionals as they cared for this complex group of patients. CONCLUSION: The study highlights the distinct phases of a prolonged critical illness. Knowledge of these phases provides the ground work for improving care, not only for patients but also for their family and the healthcare professionals who provided care.

A multicase study of prolonged critical illness in the intensive care unit: Families' experiences.

BACKGROUND: It is widely acknowledged a critical illness is a stressful life event for not only the patient but also their family members; when an illness becomes prolonged, the impact is profound. It is suggested that as medical technologies advance, the number of days patients stay in an intensive care unit will increase. Therefore, it is important nurses understand how families experience a prolonged critical illness of their family member in an intensive care unit. OBJECTIVE: To explore the trajectory of a prolonged critical illness in the intensive care unit from the experiences of family. METHODS: A qualitative, longitudinal, multi-case design consisting of six cases from New Zealand intensive care units. Findings presented in this article only relate to the family's experiences, although patients and healthcare professionals formed part of each case. Data collection methods included observation, conversations, interviews and document review. Analysis was undertaken using thematic analysis, vignette development and trajectory mapping. FINDINGS: Relentless uncertainty dominated all phases of the trajectory for the family during a family member's prolonged critical illness in the intensive care unit. When faced with a critical illness, family shifted rapidly into a world of unknowns. Family worked hard to navigate their way through the many uncertainties that dominated each phase of their family member's illness. CONCLUSIONS: Nurses need to understand the levels of uncertainty families endure in order to provide care that meets the philosophical underpinnings of family centred care.

The impact of a prolonged stay in the ICU on patients' fundamental care needs.

AIMS AND OBJECTIVES: To explore patients', families' and health professionals' experiences of a long-stay patient in an intensive care unit. BACKGROUND: The fast-paced technologically driven intensive care unit environment, designed for a short patient stay, supports the provision of complex physiologically focused care for those with life-threatening illnesses. Long-stay patients with pronounced fundamental care needs fall outside predicted patient pathways, and nurses can find caring for these patients challenging. DESIGN AND METHODS: A longitudinal, qualitative, multicase study of six cases from four New Zealand units. Case participants were patients, family members, nurses and other health professionals. Data collection methods included observation, conversations, interviews and document review. Data were analysed using thematic analysis, vignette development and trajectory mapping. RESULTS: Challenges and successes of providing fundamental care for long-stay ICU patients are attributed to two interlinked factors. First, the biomedical model influences ICU nursing practices, resulting in prioritising tasks and technology for patient survival while simultaneously devaluing relational and comfort work. Fundamental psychosocial needs such as family presence, comfort, relationships and communication may be unmet. Second, the unit environment and culture have a significant impact on long-stay patients' ICU experiences and form physical and psychological barriers to families being present and involved. Some nurses negotiated these challenges to provide fundamental, patient- and family-centred care by adopting an approach of knowing the patient and these nurses reported satisfaction when seeing patients' positive responses. CONCLUSION: The care environment and culture provide challenges to the provision of patient- and family-centred care for long-stay patients; however, when nurses prioritise knowing their patient these challenges can be overcome and patient and family distress reduced with the potential to improve patient outcomes. RELEVANCE TO CLINICAL PRACTICE: Recognition that patients have fundamental care needs irrespective of the setting where they receive care. Intensive care environments and cultures create challenges for nurses when there is such a heavy burden of physiological needs to be met and technological tasks to be undertaken, with a focus on acuity; however, improving provision fundamental care can result in positive patient outcomes.

Rethinking the intensive care environment: considering nature in nursing practice.

AIMS AND OBJECTIVES: With consideration of an environmental concept, this paper explores evidence related to the negative impacts of the intensive care unit environment on patient outcomes and explores the potential counteracting benefits of 'nature-based' nursing interventions as a way to improve care outcomes. BACKGROUND: The impact of the environment in which a patient is nursed has long been recognised as one determinant in patient outcomes. Whilst the contemporary intensive care unit environment contains many features that support the provision of the intensive therapies the patient requires, it can also be detrimental, especially for long-stay patients. DESIGN: This narrative review considers theoretical and evidence-based literature that supports the adoption of nature-based nursing interventions in intensive care units. METHODS: Research and theoretical literature from a diverse range of disciplines including nursing, medicine, psychology, architecture and environmental science were considered in relation to patient outcomes and intensive care nursing practice. CONCLUSION: There are many nature-based interventions that intensive care unit nurses can implement into their nursing practice to counteract environmental stressors. These interventions can also improve the environment for patients' families and nurses. RELEVANCE TO CLINICAL PRACTICE: Intensive care unit nurses must actively consider and manage the environment in which nursing occurs to facilitate the best patient outcomes.

Cancer care decision making in multidisciplinary meetings.

Little research has been undertaken on the actual decision-making processes in cancer care multidisciplinary meetings (MDMs). This article was based on a qualitative observational study of two regional cancer treatment centers in New Zealand. We audiorecorded 10 meetings in which 106 patient cases were discussed. Members of the meetings categorized cases in varying ways, drew on a range of sources of authority, expressed different value positions, and utilized a variety of strategies to justify their actions. An important dimension of authority was encountered authority-the authority a clinician has because of meeting the patient. The MDM chairperson can play an important role in making explicit the sources of authority being drawn on and the value positions of members to provide more clarity to the decision-making process. Attending to issues of process, authority, and values in MDMs has the potential to improve cancer care decision making and ultimately, health outcomes.

Clinicians' views on introducing epidermal growth factor receptor testing in New Zealand.

AIM: Inequities exist in the outcomes of patients diagnosed with lung cancer in New Zealand, with Maori (the indigenous population) having significantly higher diagnosis rates and poorer survival. We investigated the feasibility of introducing epidermal growth factor receptor (EGFR) testing into New Zealand as one step to address these inequities. METHODS: An anonymous electronic questionnaire was distributed to clinicians from specialties involved in lung cancer management. Questions were grouped around topics including challenges in lung cancer management, EGFR testing, targeted therapy, costs and interest in the development of a national lung tissue bank. RESULTS: In total, 61 clinicians responded and noted that few of their non-small-cell lung cancer patients were tested for EGFR mutations. Most clinicians (84%) would prefer a centralized testing service and 95% would use an overseas laboratory if publicly funded; however 62% did not know or had no preference for test procedures. Under half (46%) had used tyrosine kinase inhibitors with only a small number of patients and 79% supported the development of a lung tissue bank. CONCLUSION: While most respondents had little experience with EGFR testing, clinicians supported its introduction into New Zealand. However, a number of potential issues, including cost, laboratory expertise and the need for improved access to first-line targeted therapies that could be used if tests were mutation positive were also identified. Respondents identified potential cultural sensitivities related to sending tissue samples abroad for genetic tests that would necessitate clinicians discussing this option with individual patients.

Young tertiary students and help-seeking for health advice.

Help-seeking is an active process used by people of all ages to obtain assistance to solve problems. This research sought to investigate a component of help-seeking related to health concerns. A health related help-seeking model, was adapted to frame questions for an anonymous, self-administered questionnaire. Seventy-five students aged between 16 and 24 years responded and data were analysed using content and descriptive statistical techniques. Findings indicated that young people perceived the need to seek advice when unwell, needing support or information, are resourceful, and were motivated to seek help from a variety of sources. Parents and whanau formed one usual source of advice, but young people reported one of the best sources of advice as General Practice nurses and doctors. Barriers to seeking advice included distrusting sources, and concerns about confidentiality. Unsurprisingly, many respondents used the Internet for health information, although some mistrusted that information. Nurses need to be aware of the sources of health advice and support that young people choose to use. Motivations for selecting services, providers, or sources clearly replicated what young people hold as important--sources with which they feel comfortable, have a relationship, trust, and which they perceived as maintaining confidentiality.

The contradictory effects of timelines on community participation in a health promotion programme.

Timelines are universal features of health promotion programmes, which often receive little in the way of detailed analysis. Prospectively, timelines form supportive structures; they assist in planning and provide key milestones. However, they may also simultaneously constrain action or force the prioritization of some actions over others. This article uses the case of one health promotion programme to explore the multiple timelines in action: the contract, evaluation, usual programme phases and specific to a community garden project in the programme, the seasons. This exploration demonstrates the complexity of these timelines and how they affected programme implementation and were reflected in community participation. The discussion also demonstrates the importance of skilled facilitation of programmes, especially those based on a community development approach.

Cardiac rehabilitation for women: one size does not fit all.

AIM: To investigate women's perceptions of the contribution of cardiac rehabilitation to their recovery from a myocardial infarction. BACKGROUND AND PURPOSE: Cardiac rehabilitation programs have been based on research with almost exclusively male participants. It was unclear if cardiac rehabilitation programs meet the needs of women. METHOD: Ten women who had experienced one or more myocardial infarctions were interviewed. Data from these interviews were analysed using Glaserian grounded theory. FINDINGS: The core category that emerged from the data was 'regaining everydayness'. Participants worked to regain their 'everydayness' through a basic social process of 'reframing'. Reframing involved coming to terms with what they had experienced and fitting it into their lives. Other categories related to symptom recognition and recovery. CONCLUSION: Cardiac rehabilitation programs contributed to overall recovery from a myocardial infarction in different ways for each participant. Although programs provided information for participants, they failed to provide the type of support needed to effectively aid reframing and recovery. Programs did not meet the needs of all participants and it was apparent that one size does not fit all.