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.     

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.     

Shifting focus: A grounded theory of how family members to critically ill patients manage their situation

ObjectivesCritical illness is a life-threatening condition for the patient, which affects their family members as a traumatic experience. Well-known long-term consequences include impact on mental health and health-related quality of life. This study aims to develop a grounded theory to explain pattern of behaviours in family members of critically ill patients cared for in an intensive care unit, addressing the period from when the patient becomes critically ill until recovery at home.Research methodology/designWe used a classic grounded theory to explore the main concern for family members of intensive care patients. Fourteen interviews and seven observations with a total of 21 participants were analysed. Data were collected from February 2019 to June 2021.SettingThree general intensive care units in Sweden, consisting of a university hospital and two county hospitals.FindingsThe theory Shifting focus explains how family members’ main concern, living on hold, is managed. This theory involves different strategies: decoding, sheltering and emotional processing. The theory has three different outcomes: adjusting focus, emotional resigning or remaining in focus.ConclusionFamily members could stand in the shadow of the patients’ critical illness and needs. This emotional adversity is processed through shifting focus from one’s own needs and well-being to the patient’s survival, needs and well-being. This theory can raise awareness of how family members of critically ill patients manage the process from critical illness until return to everyday life at home. Future research focusing on family members’ need for support and information, to reduce stress in everyday life, is needed.Implications for Clinical PracticeHealthcare professionals should support family members in shifting focus by interaction, clear and honest communication, and through mediating hope.     

Balancing hope and despair at the end of life: The contribution of organ and tissue donation

PurposeConcern for the grieving family can moderate the intentions of critical care staff to advocate deceased organ and tissue donation. Conversely, benevolent actions may provoke distress through missed opportunities to save or transform lives. This article provides insight into the perceived benefits of organ and tissue donation for grieving families who experienced end-of-life care in the intensive care unit.MethodsData were collected via semistructured, face-to-face or telephone interviews with 43 participants from 31 donor families. Audio recordings were transcribed verbatim and subjected to qualitative content analysis.ResultsThe study findings affirmed the importance of person-centered end-of-life care. Donor families shared examples of good-quality care and communication that contained the hallmarks of compassion, respect, dignity, and choice. We uncovered a trajectory of hope and despair in which the option of organ and tissue donation appeared to give meaning to the life and death of the deceased person and was comforting to some families in their bereavement.ConclusionsOur study findings underlined the significance of donation decision making for grieving families. Organ and tissue donation has the potential to balance hope and despair at the end of life when the wishes of the dying, deceased, and bereaved are fulfilled.     

The nature and timing of family-provider communication in late-stage cancer: a qualitative study of caregivers' experiences

ContextFamily members of people with advanced cancer can experience intensified distress and uncertainty during the final stages of their loved one’s illness. Enhanced comprehension about disease progression, symptom management, and options for care can help families adapt, cope, and plan for the future.ObjectivesGuided by concepts from the Sense of Coherence Theory, which illuminates factors that contribute to adaptation in stressful situations, the objective of this study was to explore and describe family caregivers’ accounts of the nature and timing of communication they had with a loved one’s health care provider(s) during the advanced stages of cancer and before hospice enrollment.MethodsRetrospective in-depth interviews were conducted with caregivers of 46 people who died of cancer. Interviews were audiotaped, transcribed, and submitted to an iterative process of qualitative data analysis that included 1) systematic coding, 2) the use of data matrices to display summarized results and collapse the codes into themes, 3) and axial coding to characterize the nature of the themes.ResultsOverall, communication with providers was found to be either 1) satisfactory or 2) unsatisfactory. Satisfactory communication was 1) compassionate, 2) responsive, and/or 3) dedicated. Unsatisfactory communication was described as 1) sparse, 2) conflicted, 3) contradictory, and/or 4) brink of death.ConclusionCommunication with health care providers is critical for helping family caregivers understand and manage the changes that accompany a life-limiting illness. Timely communication with information and meaningful discussion about disease progression can help families prepare for the advanced stages of an illness and approaching death.     

Being family: the family experience when an adult member is hospitalized with a critical illness

Aims and objectives. The purpose of this qualitative study was to understand and interpret the ‘family experience’ with an adult member hospitalized with a critical illness. Background. Nursing practice in critical care settings has traditionally focused on individual patient needs with only tangential recognition of family needs. Investigation to describe the family experience to illuminate family nursing practice has been lacking. The majority of studies thus far related to critical illness and family are quantitative and reveal constraints to family care and problematic nurse–family interactions. The logical next step is a new kind of family research to enhance nursing of the family as a whole. Design. Family systems theory and existential phenomenology provided the frameworks guiding the study. Methods. Semi‐structured ‘family as a group’ interviews were performed with 11 families. Data were analysed using Van Manen's hermeneutic method. Rigor was addressed with trustworthiness criteria. Results. The family experience was analysed within Van Manen's framework of lived space, lived relation, lived body and lived time. A constitutive pattern of being family was revealed. Conclusions. Being family bonds families and makes them exceedingly strong during the critical illness experience. Being a family unit is what gives most families the ability to endure the emotional upheaval and suffering that come with the critical illness experience. Relevance to clinical practice. Nurses have profound power to help families bear this experience. Family caring is enhanced with the presence of nurses who recognize the importance of ‘Being Family’ for the family, acknowledge the significance of the nurse–family relationship and act on a commitment to be with and for the family.     

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.     

La ausencia familiar en la atención de urgencia conlleva sufrimiento en pacientes y familiares

AimTo understand what the absence of the family during emergency care means to adult patients and their families to.MethodA grounded theory study was conducted in two emergency units of two public hospitals in southern Brazil. From October 2016 to February 2017, 15 interviews with patients and 15 with family members were carried out. The data were analyzed following the comparative method.ResultsThe patients and families experienced the absence of the family in emergency care as a process of suffering caused by the separation of patient and family; they did not understand the reasons for family exclusion, and were resigned to the situation.ConclusionUrgent care per se entails suffering in patients and their relatives; this suffering intensifies when the family is separated and cannot accompany the patient during emergency care. These results show the need to develop health strategies and policies that contribute to the comprehensive care of patients and families in hospital emergency units.     

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.     

Family care of Taiwanese patients who had attempted suicide: a grounded theory study

Title. Family care of Taiwanese patients who had attempted suicide: a grounded theory study Aim. This paper is a report of a study to explore family carers’ and suicidal ex‐patients’ perceptions of the home environment and the provision of care in the home. Background. Worldwide, in 2000 approximately one million people died from suicide, which is among the three leading causes of death among those aged 15–44 years. Internationally, epidemiological trends show that there has been a rapid increase in suicide rates in many countries, including Taiwan. Families have an important role in caring for a member who is at risk of suicide. Methods. Using a grounded theory approach, data were collected in 2006–2007 in two Taiwanese hospitals. Interviews were conducted with suicidal patients who had just been discharged (n = 15) and family members (n = 15). Data were analysed using open, axial and selective coding. Findings. For the purpose of a larger study a substantive theory was formulated, which families could use to guide them in the care of a member who is at risk of suicide. Here we report the findings related to the ‘context’ and ‘intervening conditions’ of the grounded theory. Two categories emerged in the ‘context’ element, namely ‘the family environment’ and ‘the Chinese culture’. One category surfaced in the ‘intervening condition’ namely, ‘The provision of care in the home’. This category included three sub‐categories: support systems; coping mechanisms and helping skills. Conclusion. Family carers experienced difficulties when caring for a member who had previously attempted suicide. Before patients are discharged from hospital, nurses should educate families on the preventive and caring approaches that they could use in their homes.     

Family support liaison in the witnessed resuscitation: A phenomenology study

BackgroundFamily-witnessed resuscitation remains controversial among clinicians from implementation to practice and there are a number of countries, such as Iran, where that is considered a low priority.ObjectiveTo explore the lived experience of resuscitation team members with the presence of the patient's family during resuscitation.DesignThe hermeneutic phenomenology.SettingsThe emergency departments and critical care units of 6 tertiary hospitals in Tabriz, Iran.ParticipantsThere were potentially 380 nurses and physicians working in the emergency departments and acute care settings of 6 tertiary hospitals in Tabriz. A purposive sample of these nurses and physicians was used to recruit participants who had at least 2 years of experience, had experienced an actual family witnessed resuscitation event, and wanted to participate. The sample size was determined according to data saturation. Data collection ended when the data were considered rich and varied enough to illuminate the phenomenon, and no new themes emerged following the interview of 12 nurses and 8 physicians.MethodsSemi-structured, face- to- face interviews were held with the participants over a period of 6 months (April 2015 to September 2015), and Van Manen’s method of data analysis was adopted.ResultsThree main themes emerged from the data analysis, including ‘Futile resuscitation’, ‘Family support liaison’, and ‘Influence on team’s performance’. A further 9 sub-themes emerged under the 3 main themes, which included ‘futile resuscitation in end-stage cancer patients’, ‘when a patient dies’, ‘young patients’, ‘care of the elderly’, ‘accountable person’, ‘family supporter’, ‘no influence’, ‘positive influence’, and ‘negative influence’.ConclusionsParticipants noted both positive and negative experiences of having family members present during cardiopulmonary resuscitation. Welltrained and expert resuscitation team members are less likely to be stressed in the presence of family. A family support liaison would act to decrease family anxiety levels and to de-escalate any potentially aggressive person during the resuscitation. It is recommended that an experienced health care professional be designated to be responsible for explaining the process of resuscitation to the patient’s family.     

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.     

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.     

Family and health professional experience with a nurse-led family support intervention in ICU: A qualitative evaluation study

ObjectivesTo investigate family and health professional experience with a nurse-led family support intervention in intensive care.DesignQualitative evaluation study.SettingA twelve-bed surgical intensive care unit in a 900-bed University Hospital in Switzerland.Main outcome measuresData were collected through 16 semi-structured interviews with families (n = 19 family members) and three focus group interviews with critical care staff (n = 19) and analysed using content analysis strategies.FindingsFour themes related to the new family support intervention were identified. First, families and staff described it as a valuable and essential part of ICU care. Second, it facilitated staff-family interaction and communication. Third, from staff perspective, it promoted the quality of family care. Fourth, staff believed that the family support intervention enabled them to better care for families through increased capacity for developing and sustaining relationships with families.ConclusionsAn advanced practice family nursing role coupled with a family support pathway is an acceptable, appreciated and beneficial model of care delivery in the inttensive care unit from the perspective of families and critical care staff. Further research is needed to investigate the intervention’s effectiveness in the intensive care unit.     

Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care

BackgroundAn emphasis on patient choice in health and social care underpins a growing interest in advance care planning. Few studies have explored the views and experiences of people with advanced lung cancer about discussing their wishes or preferences for end of life care. Evidence suggests that some people may want nurses and other health professionals to initiate discussions about the future. However, there is a lack of evidence about what priority patients facing death give to their preferences and wishes, and how these shape their views about end of life.ObjectivesTo explore the views and experiences of people affected by lung cancer about discussing preferences and wishes for end of life care and treatment.DesignA qualitative study using semi-structured interviews and constant comparative method of analysis to develop a grounded theory.SettingsOne multi-cultural city and one post-industrial town in northern England, UK. Data were collected between 2006 and 2008.ParticipantsInterviews took place with 25 patients with lung cancer and 19 family members.MethodQualitative constructivist grounded theory study.ResultsThe study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. A theory ‘maintaining integrity in the face of death’ is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as ‘normal’ to help them balance living in the present whilst facing death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one's own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death.ConclusionThe study suggests that people facing the end of their life primarily focus on living in the present. The findings suggest that nurses need to develop ways of helping people prepare for the ‘social’ rather than just the physical or ‘medicalised’ aspects of death.     

Progressive exhaustion: A qualitative study on the experiences of Iranian family caregivers regarding patients undergoing hemodialysis

ObjectiveThe aim of this study was to explore the burden of care for patients undergoing hemodialysis from the experiences of family caregivers.MethodsIn this qualitative study, a content analysis approach was used for data collection and analysis. Participants were 16 family caregivers selected through purposive sampling from four medical education centers affiliated with Ahvaz Jundishapur University of Medical Sciences, Iran. Semi-structured interviews were held to collect data.ResultsFour categories were developed as follows: ‘care challenges’, ‘psychological vulnerabilities’, ‘the chronic nature of care ’and “care in the shade”. The categories led to the development of the main theme of ‘progressive exhaustion’ experienced by the family caregivers during the provision of care to patients undergoing hemodialysis.ConclusionFamily caregivers have a significant role in the process of patient care, and this role leads them to progressive exhaustion; therefore, the overall health of the caregivers should be taken into account and more attention should be paid to their quality of life, social welfare, and satisfaction level.