The experience of being an 'extracorporeal membrane oxygenation' relative within the CESAR trial

Aims and objectives: This article reports a study exploring experiences of the relatives of adult patients receiving extracorporeal membrane oxygenation (ECMO) within the CESAR trial. Background: Relatives of ECMO patients have undergone unique experiences which have not previously been addressed in the literature and thus may have different needs which may not be met by present practice. Design and methods: A grounded theory approach was adopted. In‐depth unstructured interviews were conducted with family members of 10 surviving adult patients who had been randomized and received ECMO within the CESAR trial. Results: Relatives have a range of needs specific to the ECMO experience, these include the depth and positivity of information. Particular areas for support were concerning a perceived self‐inflicted nature of illness, personal guilt, distance from home, receiving ‘the call’, weaning from sedation and transfer/discharge from the ECMO unit. Conclusions: Relatives would benefit from the opportunity to talk about their ‘ECMO experiences' following the patient's recovery to enable them and their families to ‘move on’. Relevance to clinical practice: Interventions need to be in place to follow‐up relatives and patients to provide ongoing support to the family unit.     

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.     

Responding to families' questions about the meaning of physical movements in critically ill patients

Background

Families may have questions about the meaning of physical movement in critically ill patients for whom movements are likely involuntary. If unresolved, these questions may contribute to difficult communication around end-of-life care. This study used qualitative methods to describe physicians' responses to families' questions about the meaning of patients' movements in critically ill patients.

Methods

Fifty-one family conferences in which withdrawal of life support or discussion of bad news was addressed were audiotaped and analyzed with a limited application of grounded theory techniques. Patients were identified from intensive care units in 4 Seattle area hospitals. Two hundred twenty-seven family members and 36 physicians participated in the study.

Results

Family members' questions indicating lack of resolution about the meaning of patients' movements that were likely involuntary occurred in 6 (12%) of the 51 conferences. Physicians used 3 approaches to respond to the following questions: (1) providing clinical information, (2) acknowledging families' emotions, and (3) exploring the meaning of families' emotions. Physicians were most likely to provide clinical information in these situations and infrequently explored the meaning of families' emotions.

Conclusions

Physicians' responses to family questions indicating lack of resolution about the meaning of patients' movements that were likely involuntary can be categorized into 3 types. Physicians may be better able to respond to and resolve these questions by using all 3 types of communication approaches. Future studies should determine if such responses can improve families' experiences and other outcomes.     

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.     

Rehabilitation in the Federal Republic of Germany

The purpose of this paper is to review the dynamics and functioning of families with a severely head-injured member. In order to stress the unique problems faced by persons with brain damage and their families, a comparison with spinal cord-injured individuals is presented. The review's major conclusion is that a head injury exposes the family to a complex of problems that are unique to this disability and, therefore, necessitates the delivery of special family support services focused on the family, rather than on the head-injured person.     

The needs of families of ICU trauma patients: an integrative review

BackgroundThe sudden, devastating, nature of traumatic injuries has a profound effect on patients and their families. When family needs are appropriately met in the intensive care units (ICU), families are empowered to support their injured relative (Blom et al., 2013). While the needs of families of general ICU patients have been examined the needs of trauma patients’ families are not known and may be unique.AimThe authors aimed to answer the question: “What are the needs of families of the adult ICU trauma patient?”MethodAn integrative review methodology was used.ResultsSixteen publications were included from ‘traumatic brain injury’ and ‘burns’ trauma subgroups. The themes of ‘information’; ‘making sense’; ‘hope’; ‘support’; ‘involvement’ and ‘protection’ were identified from the literature. ‘Protection’ was unique to trauma families, while the other themes concurred with those previously reported for general ICU families. This review was constrained by the lack of focused trauma patients’ families’ research, and was reliant on traumatic brain injury and burns subgroup studies. How the needs of these subgroups relate to other trauma patients’ families is not known, and worthy of further research.     

Hospital and homecare nurses' experiences of involvement of patients and families in transition between hospital and municipalities: A qualitative study

Background

Involving patients and families in nursing care is essential to improve patients' health outcomes. Furthermore, families play an essential role in supporting patients by helping nurses understand the patient's everyday life. However, families also need support. Involvement of patients and families is especially important when patients are transferred between hospital and home as transitions heighten the risk of compromising quality and safety in care. However, no consensus exists on how to involve them. Consequently, this may challenge a systematic approach toward patient and family involvement.

Aim

To describe hospital and homecare nurses' experiences with involving patients and their family members in nursing care in the transition between hospital and municipalities.

Method

Focus group interviews were conducted in the Gastro unit at a large university hospital in Denmark. Participants included 10 hospital nurses from three wards at the Gastro unit and six homecare nurses from one of three municipalities in the hospital catchment area (total n = 16). Data were analysed using qualitative content analysis. The study is reported according to the Consolidated Criteria for Reporting Qualitative Research.

Findings

Our analysis revealed one overall theme – “The complexity of involvement” – based on four categories: gap between healthcare sectors increases the need for patient and family involvement, lack of time is a barrier to patient and family involvement, involvement is more than information, and involvement as a balancing act.

Conclusion

The nurses experienced patients' and families' involvement as essential, but a discrepancy was found between nurses' intentions and their actions. Aspects related to a gap between healthcare sectors and various understandings of involvement challenged the systematic involvement of patients and families in the transition between healthcare sectors. However, the nurses were highly motivated to achieve a close cross-sectoral collaboration and to show commitment towards patients and families.     

Korean nurses’ perceived facilitators and barriers in provision of end‐of‐life care

This study examined nurses’ perceived facilitators and barriers to end‐of‐life (EOL) care in clinical settings. The study participants were 383 Korean nurses working at tertiary hospitals. The nurses had an average of 7.6 years of clinical experience. The three highest‐scoring facilitating items were ‘family member acceptance of patient death’, ‘having time to prepare the family for the patient's expected death’ and ‘having the physician meet with the family after the patient's death to offer support and validate the given care’. The top two perceived barriers were ‘families not accepting what the physician is telling them about the patient's prognosis’ and ‘dealing with angry family members’. Nurses who had received EOL care education showed a higher score in perception of facilitators than nurses who did not receive that education. EOL care for patients and their families is a challenge; thus, continuing education should be provided to improve nursing practice.     

A narrative-based study on communication by family members in intensive care unit

Purpose

This study investigates how informative stories are, as written by patients' families in an intensive care unit (ICU) guest book, in terms of families' emotional responses, needs, perceptions, and satisfaction with the quality of care supplied.

Materials and Methods

Design was retrospective observational. Spontaneously written stories (440), gathered between 2009 and 2011, described experiences of 332 family members and 258 patients. Multivariate information from stories was analyzed using cluster analysis.

Results

Most frequently, stories were written in the form of letters addressed to patients (38%, 168 stories). Family members wrote mainly to give encouragement and to motivate patients to live (34%, 150 stories), expressing love or affection (56%, 245 stories). Feedback to ICU staff was provided in 65 stories, and competence was the most relevant skill recognized (31%, 20 stories). Cluster analysis highlighted links between positive feedback and families' positive emotional responses.

Conclusions

The study suggests that ICU guest books can be an effective and simple means of communication between the family, the patient, and the ICU staff. Families shared thoughts, feelings, or opinions, which were meant to be supportive for the patients or rewarding for the staff.     

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.     

Becoming a cancer patient: A study of families of children with acute lymphocytic leukemia

This grounded theory study was designed to explore the process by which families of children with acute lymphocytic leukemia (ALL) “become” cancer patients. Data were obtained through interviews with four families and three professional caregivers and were analyzed for processes by which families experience the illness of ALL. The central process of “becoming” was defined as trying to live as “normally” as possible; accepting that life is not the same; understanding what you have to do; and accepting what you can't change/living with dissatisfactions. This process was mediated by families' external contexts, including marital relationships and support networks, experiential contexts, including positive and negative experiences during treatment and previous illness experiences, and internal contexts, including personal survival strategies and personal outlooks and attitudes. The process illustrates the pattern of experience that occurs in families faced with the diagnosis of their child's ALL. Understanding this process may be useful to care providers when treating children with cancer.     

Fulfilling the psychological and information need of the family members of critically ill patients using interactive mobile technology: A randomised controlled trial

BackgroundIntensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information.AimTo determine whether ‘education of families by tab’ about the patient’s condition was more associated with improved anxiety, stress, and depression levels than the ‘education of families by routine’.Research designA randomized control trial of 74 main family caregivers (intervention: 39; control: 35).SettingAn adult intensive care unit.Main outcome measuresDepression Anxiety Stress Scale, and Communication and Physical Comfort Scale.ResultsAlthough information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (p < 0.01; η² = 0.09) with a medium effect size. Reduction of anxiety in the intervention group were clinically significant.ConclusionThe results suggest that use of ‘education of family by tab’ is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing.     

Mothers' experiences of a stay in an ICU after a complicated childbirth

Background: To be cared for in an intensive care unit (ICU) after a complicated childbirth is often an unplanned and transforming experience, and there is lack of studies describing mothers' experiences of this phenomenon. Aim: The aim of this study was to describe the experiences of becoming a mother after a complicated delivery and a stay in an ICU. Methods: Qualitative personal interviews were conducted with eight mothers. The interview texts were subjected to qualitative thematic content analysis. Findings: The analysis resulted in one theme; wishing to be in control and together as a family, and six categories; being or not being prepared, feeling afraid, not being as ill as the others, knowing about the baby, worrying about the father and having someone to talk to. The findings highlight the need to receive continual information about what is happening, especially with the baby, and the need to be together as a family. Conclusion and relevance to clinical practice: The mothers need support and encouragement from the staff throughout their hospital stay, and sometimes afterwards. There is a need to receive information, especially about the baby, and to have one's family close by, when in an ICU despite illness severity. How the new family is met by the staff is of great importance.