Being devastated by critical illness journey in the family: A grounded theory approach of post-intensive care syndrome-family

ObjectivesThis study aimed to explore the meaning and structure of postintensive care syndrome experienced by families of critically ill patients.MethodsThis qualitative study applied the constructivist grounded theory approach and conducted one or two interviews with eight participants with postintensive care syndrome-family for a total of 12 interviews. The contents of the interviews were analysed through line-by-line coding, focused coding, and categorisation. Data collection and analysis were iterative, to enable continuous comparative analysis.FindingsThe core category of postintensive care syndrome experienced by families was ‘being devastated by the critical illness journey in the family’ and comprised the interactions of four categories: ‘overwhelming intensive care experience’, ‘taking responsibility for the recovery trajectory of critical illness’, ‘life devastated by the trauma of intensive care and family caregiving’, and ‘balancing and compromising’.ConclusionBased on this grounded theory approach, postintensive care syndrome experienced by families is a complex and ongoing phenomenon that arises from the recovery trajectory of a critical illness. It involves mental, physical, social and familial aspects, particularly the impact on the patient’s family.Implications for Clinical PracticeThe findings can guide critical care nurses to understand postintensive care syndrome experienced by families in providing patient or family-centred care. To improve the long-term outcomes and quality of life for families, it is necessary to assess their unique needs within the continuum of post-intensive care syndrome experienced by the family and to propose interventions to satisfy those needs.     

Stabilizing life: A grounded theory of surviving critical illness

ObjectivesThe experience of critical illness among patients is both complex and multifaceted. It can make patients vulnerable to long-term consequences such as impairment in cognition, mental health and physical functional ability which affects health related quality of life. This study aims to explore patients’ patterns of behaviour during the process from becoming critical ill to recovery at home.DesignWe used a classic grounded theory methodology to explore the main concern for intensive care patients. Thirteen participants were interviewed and seven different participants were observed.SettingThree general intensive care units in Sweden, consisting of a university hospital, a county hospital and a district hospital.FindingsThe theory Stabilizing life explains how patients’ main concern, being out of control, can be resolved. This theory involves two processes, recapturing life and recoding life, and one underlying strategy, emotional balancing that is used during the whole process.ConclusionThe process from becoming critically ill until recovery home is perceived as a constant fight in actions and mind to achieve control and stabilize life. This theory can form the basis for further qualitative and quantitative research about interventions that promotes wellbeing during the whole process.     

Family functioning of families experiencing intensive care and the specific impact of the COVID-19 pandemic: A grounded theory study

ObjectivesIn order to provide a deeper understanding of family functioning, the aim of this study was to identify, describe and conceptualise the family functioning of families where a formerly critically ill family member had stayed at the intensive care unit, with the impact of a pandemic.Research methodology/designThe study has a grounded theory design including interviews with eight families.SettingFormer adult intensive care patients cared for Covid-19 infection and their family. Eight patients and twelve family members from three different intensive care units.Main outcome measuresThe results presented are grounded in data and identified in the core category “Existential issues” and the categories “Value considerateness; Anxiety and insecurity in life; Insight into the unpredictability of life.”FindingsThe core category could be found in all data and its relationship and impact on the categories and each other. The core is a theoretical construction, whereas the family functioning of families where a formerly critically ill family member had stayed at the intensive care unit was identified, described, and conceptualised. Being able to talk repeatedly about existential issues and the anxiety and insecurity in life, with people that have similar experiences helps the patient and their family to consider and gain insight into the unpredictability of life, and thereby better cope with changes in life.ConclusionThere is awareness about the love that exists within the family. A willing to supporting each other in the family even if the critical illness made the family anxious and afraid.Implications for clinical practiceEven if the pandemic Covid-19 led to restrictions inhibiting family focused nursing, it is important to confirm the family as a part of the caring of the ICU patient. The patients are not alone, their family are fighting together for the future.     

The decision-making process of transferring patients home to die from an intensive care unit in mainland China: A qualitative study of family members’ experiences

ObjectivesTo map the decision-making process of family members involved in transferring a critically ill patient home to die from an intensive care unit in mainland China and to explore the experiences of those family members.DesignA constructivist qualitative study.SettingOne hospitals intensive care unit in Southeast China.MethodsThirteen adult family members (of ten patients) who participated in decision-making related to transferring a relative home to die from the intensive care unit were purposively selected. Data were collected via interviews and analysed applying thematic analysis.FindingsA two-stage decision-making process was identified. Family decision-making was mediated by factors including: accepting the impending death and hope that the patient would not die; time pressures in which decisions had to be made, and the challenges of meeting cultural expectations of a home death. Transfer home was a family-centred decision constrained by a gender-based hierarchy restricting the involvement of different family members.ConclusionThe stages and key factors in the decision-making process of family members when involved in transferring a patient home to die from an intensive care unit in China are rooted and informed by cultural expectations and limits in the current healthcare system regarding end-of-life care options. Understanding the climate in which family members must make decisions will facilitate supportive interventions to be implemented by healthcare professionals. Further empirical research is needed to explore family members’ needs when the patient has been transferred and dies at home in mainland China.Implications for Clinical PracticeHealthcare professionals need to understand the challenges family members face when deciding to transfer a relative home to die from an intensive care unit. For example time pressures can limit the choices of family members so that to provide them with timely, ongoing, realistic updates for a greater involvement of family members in generating end of life care plans could be beneficial.¹     

Open visiting in adult intensive care units – A structured literature review

BackgroundOpen visitation in adult intensive care units report benefits such as reduced frequency and duration of deliriums, improved patient and family satisfaction, and reduced anxiety and depression of family members. ‘Being close’ is one of the most basic and important needs of family members of critically ill patients. Open visitation provides an increased opportunity of being at the bedside with the patient, however, it is not universally embraced by adult intensive care units worldwide.AimTo critically appraise the literature concerning open visitation in adult intensive care units.DesignA structured literature review.MethodThis review was guided by the methodology by Kable et al. (2012). Sixteen articles are included in the review.ResultsDespite the documented benefits, several challenges exist which hinder broad application of open visitation in adult intensive care units.ConclusionThis review acknowledged challenges faced in adopting an open visiting policy in adult intensive care units such as negative staff perceptions and attitudes; patient protection; family and cultural consideration, as well as organisational challenges. The lack of a clear and consistent definition of open visitation is problematic, and strategies are urgently needed to support staff to provide holistic patient- and family-centred care.     

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

BackgroundContemporary 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.ObjectiveThe 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.MethodsThis 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.ResultsRegardless 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.ConclusionThe 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.     

How to communicate with family members of the critically ill in the intensive care unit: A scoping review

ObjectiveTo map the existing approaches to communication with family members of the critically ill in the intensive care unit and the corresponding implementation requirements and benefits.MethodsWe conducted a scoping review in February 2022 by searching PubMed, CINAHL, APA PsycINFO, and Cochrane Library for articles published between 2000 and 2022. We included records of all designs that met our inclusion criteria and applied frequency counts and qualitative coding.ResultsThe search yielded 3749 records, 63 met inclusion criteria. The included records were of an interventional (43 %) or observational (14 %) study design or review articles (43 %), and provided information in three categories: communication platforms, strategies, and tools. For implementation in the intensive care unit, the approaches required investing time and resources. Their reported benefits were an increased quality of communication and satisfaction among all parties involved, improved psychological outcome among family members, and reduced intensive care unit length of stay and costs.ConclusionThe current approaches to communication with patients’ family members offer insights for the development and implementation of communication pathways in the intensive care unit of which the benefits seem to outweigh the efforts. Structured interprofessional frameworks with standardised tools based on empathic communication strategies are encouraged.     

The experience of ambiguous loss in families of brain injured ICU patients

Background: Advances in medical technology have led to increased survival rates for critically ill patients, resulting in the survival of patients with serious traumatic brain injury. These patients may suffer some permanent brain damage leading to an ambiguous loss in families. Ambiguous loss has two dimensions: (1) a loss that relates to the physical absence but psychological presence of the family member and (2) a loss that refers to the psychological absence but physical presence of the family member. Aim: The overall study aimed at exploring families' experiences with critical illness in intensive care and nurses' perception of families. This article presents findings of one specific aspect, namely, families who experienced an ambiguous loss following the patient's brain injury which resulted in permanent brain damage. Design and method Constructivist grounded theory that used focus groups as the method of choice. Reported data originate from nine family interviews (12 adults, 12 children/young people). Data analysis: Interviews were recorded, transcribed verbatim and imported into NVivo for data management and analysis. The principle approach in grounded theory, the constant comparative method, was followed. Results: The findings suggest that ‘the emergence of ambiguous loss' reflects the families' experiences with the second type of ambiguous loss, namely a loss that relates to a family member who was physically present but psychologically absent. ‘Mapping the future’ is a further dimension of this theme which underlines the impact of an ambiguous loss on everyday family life. Conclusion: Families where the patient had suffered permanent brain damage experience an ambiguous loss. In this situation a caring scenario emerged which had a fundamental impact on the family's future. The dimension of ‘mapping the future’ draws out these implications for different family members. Relevance to clinical practice: Nurses need to be aware of the implications an ambiguous loss can have on families.     

Participación de la familia en el cuidado del paciente crítico: un estudio exploratorio

ObjectivesTo determine the level of readiness of the healthcare team regarding family participation in the care of the critically ill adult and their relationship with the individual characteristics of the participants in a medical-surgical intensive care unit (ICU) in Santiago de Chile.MethodA cross-sectional correlational study using a quantitative method and including a focus group to explore the perception of healthcare staff of family participation in the care of the critically ill patient.ResultsThe level of readiness of the healthcare team for family participation in the care of the critically ill patient is medium, at 13.81 out of a total 20. The greater the readiness, the lower the age (r=?.215; P=.019), the higher the rating of previous experience working with families (r=.304; P=.006), and the higher the perception of being comfortable with different activities in the care of the critical patient (r=.495: P<.001). The participants also state that the work environment of the unit, the patient's condition, the relatives’ characteristics, personal judgement, and the preparedness of relatives affect their readiness.ConclusionsThe results contribute towards determining the healthcare team's level of readiness in a setting where the subject of the study has not been implemented. The readiness of the healthcare team is medium, and is related to individual characteristics of the healthcare staff, and to organizational and family aspects. Therefore, strategies are required to address these aspects that might increase readiness.     

Nurses’ experiences of ICU diaries following implementation of national recommendations for diaries in intensive care units: A quality improvement project

ObjectivesTo evaluate critical care nurses’ experiences of ICU diaries following the implementation of national recommendations for the use of diaries for critically ill patients.DesignA quality improvement project describing the development and implementation of national recommendations (2011), as well as the assessment of the use of diaries in intensive care nursing practice (2014).SettingNorwegian intensive care units (ICUs).ParticipantsThirty-nine Norwegian ICUs took part in the study.InterventionA multi-component process for developing national recommendations for the use of diaries in Norwegian ICUs, including recommendations for the target group, when to start, health professionals as authors, diary content, structure, language, use of photographs, handover, access and storage within patient medical records.Main outcome measureA questionnaire asking about experiences of implementing national recommendations on diaries in Norwegian ICUs, as well as their impact and how they are used.ResultsThree years after the implementation of the national recommendations, diaries were provided in 24 (61.5%) of the responding ICUs. Fifty-six per cent of the ICUs had revised their routines, of which 62% had updated and 38% had developed new protocols. Most ICUs kept the diary along with other medical information describing patient care, but only 50% of the ICUs scanned handwritten diaries into the electronic medical records before handing them over to patients or the bereaved. ICU nurses reported that implementing national recommendations had increased their awareness and knowledge on patient and family needs, as well as the long-term effects of critical illness.ConclusionThe results of this quality improvement project indicate that access to national recommendations on the use of diaries for critically ill patients have a potential of changing routines and increase standardisation.     

Intensive care unit diaries to help bereaved family members in their grieving process: a systematic review

BackgroundIntensive care unit diaries are often used to support patients during their psychological recovery. The intensive care unit stay can be upsetting, disturbing and traumatic for both patients and their families especially when the patient does not survive.AimTo investigate the connection between intensive care unit diaries and the grieving process experienced by family members of adult patients deceased in the intensive care unit.MethodsSystematic literature review according to PRISMA guidelines: PubMed, CINAHL and Cochrane Library were consulted. The Caldwell’s framework was used for the quality appraisal.ResultsOnly six studies examine this topic. The potential benefits of intensive care unit diaries in family members’ bereavement process may be an aid to realise how extremely ill their loved one was, may provide comfort and may help relatives to cope with their loss.ConclusionThe use of intensive care unit diaries to help family members’ bereavement process may be a useful tool but further research is necessary to better understand their role and benefits.     

Families’ control preference for participation in patient care in adult intensive care

ObjectiveUnderstand families’ preferences and observed participation in patient care in an adult ICU.Research methodologyThe mixed-methods design used survey and naturalistic observation to collect data from a convenience sample of 30 family members of critically ill patients.SettingTwo public hospital intensive care units in Australia.Main outcome measures1) Families’ preferences for participation in decision-making and physical patient care activities in the adult intensive care unit, measured using a modified Control Preference Scale; 2) the type and frequency of family participation in patient care activities in the intensive care unit.ResultsAlmost half (47%) reported a preference to share in decision-making about care for their relative with healthcare professionals; 17% reported a preference for active participation in decision-making. Alternatively, most families preferred a passive (60%) role in the physical care of their relative ; 33% preferred shared participation with staff and very few (3%) preferred active participation with little involvement of staff. Of the 193 activities observed, family participation in physical care was the least frequent (24%).ConclusionDifferences emerged in family preferences for participation in physical care compared to their involvement in decision-making about care for their relative. The findings indicate a need for tailored interventions to support family participation aligned with their preferences.     

Using experience-based co-design to prioritise areas for improvement for patients recovering from critical illness

ObjectivesCritical illness recovery is a journey; from intensive care unit to hospital ward to home. However, evidence is limited on how best to enable recovery from critical illness. This study aimed to prioritise areas for improvement in care and services for patients recovering from critical illness.Research designThis study used experience-based co-design. Service users and providers worked in partnership to identify and prioritise service improvements for patients who had survived an episode of critical illness.MethodQualitative interviews were carried out with patients (n = 10) who had experienced critical illness, and staff (n = 9) who had experienced caring for patients in the intensive care unit. Key patient touchpoints were identified and used to produce a film, reflecting the critical illness journey. A patient feedback event incorporated an emotional mapping exercise, to identify key points during the recovery journey. A joint patient/family (n = 10) and staff (n = 10) event was held to view the film and identify priorities for improvements.FindingsEmotional mapping highlighted areas where services were not synchronised with patients’ needs. Four patient-focussed priorities for service improvement emerged 1. Improving the critical care experience, 2. Addressing patients’ emotional and psychological needs, 3. Positioning patients at the centre of services and 4. Building a supportive framework for recovery.ConclusionEvidence-based co-design was used successfully in this study to identify priorities for improvements for patients recovering from critical illness. This approach positions patients at the centre of service improvements and realigns care delivery around what matters most to patients. Person-centred care provision underpins all identified priorities.Implications for clinical practiceIntensive care unit staff should get to know patients and their families by talking more to patients and families about their care and engaging in more non-medical conversations. Emotional and psychological support should be provided to aid rehabilitation and recovery from critical illness in the intensive care unit, on general wards, and in the community. Information and services should be available when patients need them, rather than at fixed time points or settings. Recovery services should focus on enabling and building the self-efficacy of patients to empower them to be in control of their recovery journey.     

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

BackgroundIt 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.ObjectiveTo explore the trajectory of a prolonged critical illness in the intensive care unit from the experiences of family.MethodsA 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.FindingsRelentless 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.ConclusionsNurses need to understand the levels of uncertainty families endure in order to provide care that meets the philosophical underpinnings of family centred care.     

Physical,social, mental and spiritual functioning of COVID-19 intensive care unit-survivors and their family members one year after intensive care unit-discharge: A prospective cohort study

ObjectiveTo describe the long-term functioning of patients who survived a COVID-19-related admission to the intensive care unit and their family members, in the physical, social, mental and spiritual domain.DesignA single-centre, prospective cohort study with a mixed-methods design.SettingThe intensive care unit of the University Medical Center Groningen in the Netherlands.Main outcome measuresTo study functioning 12 months after intensive care discharge several measurements were used, including a standardised list of physical problems, the Clinical Frailty Scale, the Medical Outcomes Study Short-Form General Health Survey, the McMaster Family Assessment Device, the Hospital Anxiety and Depression Scale, and the Spiritual Needs Questionnaire, as well as open questions and interviews with survivors and their family members.ResultsA total of 56 survivors (77%) returned the 12-month questionnaire, whose median age was 62 (inter-quartile range [IQR]: 55.0–68.0). Moreover, 67 family members (66%) returned the 12-month questionnaire, whose median age was 58 (IQR: 43–66). At least one physical problem was reported by 93% of the survivors, with 22% reporting changes in their work-status. Both survivors (84%) and their family members (85%) reported at least one spiritual need. The need to feel connected with family was the strongest. The main theme was ‘returning to normal’ in the interviews with survivors and ‘if the patient is well, I am well’ in the interviews with family members.ConclusionsOne year after discharge, both COVID-19 intensive care survivors and their family members positively evaluate their health-status. Survivors experience physical impairments, and their family members’ well-being is strongly impacted by the health of the survivor.     

Contending With Advanced Illness: Patient and Caregiver Perspectives

ContextDespite improvements in end-of-life care, some unrelieved suffering persists for patients with advanced illness and their family members. Hospice and palliative care services can reduce suffering, but these services remain under-used.ObjectivesTo investigate how patients with advanced illness and their primary caregivers experienced and responded to health care needs and decision making and how some dyads moved toward comfort-focused care.MethodsThis was a qualitative study using the grounded theory method for sample selection, data collection, and analysis. Dyadic semi-structured interviews were audio-recorded and transcribed for analysis. Twenty-two participants, 12 patients and 10 family surrogates, provided 16 interviews for this study.ResultsParticipants engaged in a process of contending with advanced illness. The major phases comprising this process were suffering, struggling, and settling. Struggling included enduring the experience and fighting the illness. During the phase of settling, the focus shifted away from curative efforts and toward supportive care. Conditions that facilitated the movement into this phase included receiving clear and consistent information about the patient's health status, trusting health care providers, having attended to advance care planning in some form, and being aware of and able to acknowledge the terminal nature of the illness.ConclusionFindings from this pilot study offer a preliminary theoretical model to enhance the understanding of patient and family caregiver needs during advanced illness. Awareness of their perspective can inform the timing and content of clinicians' communication and interventions.