Memory making in end-of-life care in the adult intensive care unit: A scoping review of the research literature

ObjectiveThe objective of this review is to describe the practice of memory making as part of end-of-life care within an adult intensive care setting and determine reported outcomes.MethodsA scoping review of the literature was performed. Data were collected from sources such as ProQuest, CINAHL, Medline, Embase, PsycINFO, and PubMed using combinations of the keywords: including adult, critical care, intensive care, ICU, death, dying, grief, bereavement, end?of?life, memento*, memor*, keepsak*, and transitional object. Peer-reviewed studies reporting on the use of memory making within an adult intensive care setting and its outcomes for family members were included.ResultsFour activities facilitating memory making as part of end-of-life care for adults are reported in the literature, all in the intensive care setting. Use of a computer-generated word cloud image received by families in the intensive care was reported as a meaningful keepsake and sometimes displayed in places such as the patient's funeral memorial. Offering a printed copy of the patient's electrocardiogram as a memento was considered by some to be extremely or very helpful during their bereavement experience and was reported by nursing staff to be well received by family members. The use of patient diaries during bereavement has been reported with the potential to promote better understanding of the events leading to the death, and photography was also included in some patient diaries as a visual memento.ConclusionAlthough limited evidence is available concerning memory making in the adult intensive care environment, from studies to date, surviving family members of deceased patients in the intensive care unit mostly report valuing memory-making opportunities when offered. However, further research is required to evaluate both healthcare staff's competence and confidence in offering memory making and determine if such offerings promote the family's adjustment to the loss of their loved one after a death in the intensive care area.     

Supporting families of patients who die in adult intensive care: A scoping review of interventions

BackgroundFamilies who perceive themselves as prepared for an impending death experience reduced psychological burden during bereavement. Understanding which interventions promote death preparedness in families during end-of-life care in intensive care will inform future intervention development and may help limit the burden of psychological symptoms associated with bereavement.AimTo identify and characterise interventions that help prepare families for the possibility of death in intensive care, incorporating barriers to intervention implementation, outcome variables and instruments used.DesignScoping review using Joanna Briggs methodology, prospectively registered and reported using relevant guidelines.Data sourcesA systematic search of six databases from 2007 to 2023 for randomised controlled trials evaluating interventions that prepared families of intensive care patients for the possibility of death. Citations were screened against the inclusion criteria and extracted by two reviewers independently.ResultsSeven trials met eligibility criteria. Interventions were classified: decision support, psychoeducation, information provision. Psychoeducation involving physician-led family conference, emotional support and written information reduced symptoms of anxiety, depression, prolonged grief, and post-traumatic stress in families during bereavement. Anxiety, depression, and post-traumatic stress were assessed most frequently. Barriers and facilitators to intervention implementation were seldom reported.ConclusionThis review provides a conceptual framework of interventions to prepare families for death in intensive care, while highlighting a gap in rigorously conducted empirical research in this area. Future research should focus on theoretically informed, family-clinician communication, and explore the benefits of integrating existing multidisciplinary palliative care guidelines to deliver family conference within intensive care.Implications for clinical practiceIntensive care clinicians should consider innovative communication strategies to build family-clinician connectedness in remote pandemic conditions. To prepare families for an impending death, mnemonic guided physician-led family conference and printed information could be implemented to prepare families for death, dying and bereavement. Mnemonic guided emotional support during dying and family conference after death may also assist families seeking closure.     

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.     

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.     

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     

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.     

Unidentified communication challenges in the intensive care unit: A qualitative study using multiple triangulations

BackgroundCommunication in the intensive care unit is challenged by patients’ inability to speak owing to intubation, treatment, and illness. Research has focused on the use of communication tools or techniques, characteristics of the communication between patients and clinicians, and their experiences of communication challenges. However, few studies have combined the perspectives of patients, family members, and clinicians. We explored communication from different angles and investigated challenges that cannot be explained by ineffective use of aids and communication techniques.ObjectivesThe aim of this study was to explore communication between patients, family members, and nurses and to investigate previously unidentified communication challenges.MethodsThis study used a case-oriented design with multiple triangulations. It was conducted in two general intensive care units at a Norwegian university hospital. Participant observations were conducted on nine mechanically ventilated patients while communicating with family members and healthcare personnel. Following the observations, individual interviews were conducted with six patients, six family members, and nine healthcare personnel.FindingsCommunication often seemed uncomplicated at the time of observations, but information from the interviews revealed another picture. We demonstrate what participants emphasised differently when they discussed their experiences, revealing a discrepancy in perceived importance in the situation. Family members had an important role in interpreting signs from the patient, uncovering challenges that would have been unknown to the nurses otherwise.ConclusionsThis study illustrates how communication challenges in the intensive care unit may not be perceptible to an observer or to all of the participants involved at the time of the communication. Nurses need to be aware of these communication challenges and realise that the patient might face issues that cannot be easily solved without extensive involvement of the patient, family, and nurses, and perhaps not even until a later stage in the patient's recovery process.     

Staff perception of the implementation,enablers and barriers to pediatric intensive care unit diary writing: A qualitative study

ObjectivesTo explore how the multi-professional pediatric intensive care unit staff experienced the implementation of the diary.Research Methodology/DesignQualitative study using the implementation research approach.Setting: a six-bed pediatric intensive care unit at a large Italian tertiary care pediatric hospital, treating patients with acute conditions from the Emergency Department or hospital wards.Main outcome measuresHealthcare providers’ experiences of the implementation of the diaries. Data was collected by focus groups and interviews and thematic analysis was performed.FindingsThree focus groups and four interviews with staff were conducted after the implementation of thediaries from August 2020 to June 2021. Staff describe an initial disbelief towards the effectiveness of diaries followed by an increasing perception of their relevance for parents’ emotional expression through shared narration. Diaries are reported as a beneficial communication tool between the family, the child, and health care providers, increasing staff understanding of parents’ experiences of their child’s admission and parents’ sense of the care received by their child. For staff, barriers for diary writing were logistics, lack of time, limited sense of ownership, fear of legal retaliation and fear of emotional labor.ConclusionHealth care providers perceived diaries as beneficial for parents and the healthcare team, potentially supporting their partnership as recommended by Family Centered Care models. The enablers and barriers that emerged for diary writing can support the development of implementation strategies to prevent the reported challenges to diary writing in the healthcare team, enhancing their uptake in the pediatric intensive care unit setting.     

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.     

Predictors of posttraumatic growth of the family members of neurosurgical intensive care unit patients: A cross-sectional study

ObjectivesConfronted with the potentially traumatic experience of a patients intensive care unit hospitalisation, family members may show positive changes associated with growth in addition to negative impact. This study aimed to identify the level of posttraumatic growth of the family members of neurosurgical intensive care unit patients and to explore its relation to positive personality characteristics, such as gratitude, resilience and hope.Design and settingA cross-sectional study involving 340 family members of patients admitted to the neurosurgical intensive care unit at a general tertiary hospital in Shanghai, China.MethodsBefore the patients’ hospital discharge, the participants completed questionnaires, assessing posttraumatic growth (PTG Inventory), social support (Social Support Rating Scale), resilience (Chinese version of the Connor-Davidson Resilience Scale), hope (Herth Hope Index) and gratitude (Gratitude Questionnaire Six-Item Form).ResultsThe mean total posttraumatic growth score was 73.38 (14.02). Hope, gratitude, resilience and social support showed a positive correlation with the posttraumatic growth Inventory scores. There were significant differences in the posttraumatic growth scores of the family members of neurosurgical intensive care patients with respect to their different religious beliefs, payment methods, family relationship quality and presence of chronic diseases among family members. Multiple linear regression analysis showed that gratitude, resilience and social support were independent predictors of the posttraumatic growth Inventory score.ConclusionFamily members may experience some degree of posttraumatic growth during hospitalisation of patients in the neurosurgical intensive care units. Gratitude, social support and resilience are predictive factors for posttraumatic growth.     

Thematic analysis of intensive care unit diaries kept by staff: insights for caring

ObjectiveTo explore recurrent themes in diaries kept by intensive care unit (ICU) staff during the coronavirus disease 2019 (COVID-19) pandemic.DesignQualitative study.SettingTwo ICUs in a tertiary level hospital (Milan, Italy) from January to December 2021.MethodsICU staff members wrote a digital diary while caring for adult patients hospitalized in the intensive care unit for >48 hours. A thematic analysis was performed.FindingsDiary entries described what happened and expressed emotions. Thematic analysis of 518 entries gleaned from 48 diaries identified four themes (plus ten subthemes): Presenting (Places and people; Diary project), Intensive Care Unit Stay (Clinical events; What the patient does; Patient support), Outside the Hospital (Family and topical events; The weather), Feelings and Thoughts (Encouragement and wishes; Farewell; Considerations).ConclusionThe themes were similar to published findings. They offer insight into care in an intensive care unit during a pandemic, with scarce resources and no family visitors permitted, reflecting on the patient as a person and on daily care. The staff wrote farewell entries to dying patients even though no one would read them.Implications for clinical practiceThe implementation of digital diaries kept by intensive care unit staff is feasible even during the COVID-19 pandemic. Diaries kept by staff can provide a tool to humanize critical care. Staff can improve their work by reflecting on diary records.     

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.     

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.     

Factors associated with bereaved family surrogates’ satisfaction with end-of-life care in intensive care units

ObjectivesFamily satisfaction with end-of-life care in the intensive care unit constitutes an important outcome for evaluating end-of-life care quality. Research on this topic focuses on linking end-of-life care processes to family-surrogate satisfaction with the patient’s end-of-life care but has seldom examined patient- and family-surrogate-based factors. We aimed to comprehensively and simultaneously examine factors facilitating or deterring family satisfaction with end-of-life care in the intensive care unit from patient- and family-surrogate perspectives.MethodsFor this secondary-analysis study, 278 Taiwanese family surrogates were surveyed one-month post-patient death using the Family Satisfaction in the Intensive Care Unit questionnaire (FS-ICU), which measures care and decision-making. Associations between family satisfaction with end-of-life care and patient and family characteristics, patient disease severity, and length of intensive care stay were examined by multivariate, multilevel linear regression models.ResultsFemale family surrogates were more satisfied with patients’ end-of-life care than male family surrogates when patients had a higher APACHE II but a lower SOFA score. Adult-child surrogates had lower FS-ICU Care scores than other family surrogates. Higher satisfaction with ICU decision-making was associated with patients’ higher APACHE II but lower SOFA scores, longer stay and family socio-demographics, including being unmarried, educational attainment above junior high school and reported financial sufficiency to make ends meet.ConclusionPatient disease severity and family-surrogate characteristics are significantly associated with surrogates’ satisfaction with patients’ end-of-life care in the intensive care unit. Specific interventions should be tailored to the needs of high-risk family surrogates to increase their satisfaction with this care.     

Developing a framework for implementing intensive care unit diaries: a focused review of the literature

ObjectiveIntensive care unit diaries have been shown to improve post-critical illness recovery, however, prior reports of diary implementation are heterogeneous. We sought to construct a common framework for designing and implementing Intensive Care Unit diaries based on prior studies.Review method used/data sourcesWe conducted a focused review of the literature regarding intensive care diaries based on a systematic search of several databases. Two reviewers assessed 56 studies and data were abstracted from a total of 25 eligible studies conducted between 1990 and 2014. We identified key information regarding the development, design, and implementation of the journals. We then grouped elements that appeared consistently across these studies within three main categories: (1) diary target populations; (2) diary format and content; and (3) the manner of diary return and follow-up.ResultsMost studies were conducted in European countries in adult intensive care units and targeted patients in both medical and surgical units. The timing of diary initiation was based on the elapsed length of stay or duration of mechanical ventilation. We categorised diary format and content as: entry content, authors, use of standardised headings, type of language, initiation, frequency of entries, and physical location of diaries. Diaries were hand written and many studies found that photographs were an essential element in ICU diaries. We categorised the manner of diary return and follow-up. The context in which intensive care unit diaries were returned were felt to be important factors in improving the use of diaries in recovery.ConclusionsIn conclusion, we describe a common framework for the future development of intensive care unit diaries that revolves around the target population for the diaries, their format and content, and the timing of their use. Future studies should address how these elements impact the mechanisms by which intensive are diaries exert beneficial effects.     

The Intensive Care Unit diary — A significant complement in the recovery after intensive care. A focus group study

ObjectivesThe aim of this study was to gain an increased understanding of the intensive care unit diary and how it affects patients’ recovery after intensive care.Methodology/designThe study had a qualitative design and was conducted by two focus group interviews in October 2021 and was analysed with thematic analysis.SettingVentilator treated intensive care patients with a length of stay ≥ 72 hours who had received a written diary were included. The study was conducted at two university hospitals in the south of Sweden.FindingsThe intensive care unit diary can be an important complement to the medical record and notes taken by family members by enhancing understanding of critical illness. The patients experience several prominent feelings from reading the diary such as guilt, fear, and anxiety as well as feelings of being cared for. The design and content of the diary can be important used as a tool in patients’ recovery after intensive care.ConclusionUnderstanding their critical illness and the time in intensive care seems important to former intensive care patients. In this respect, the intensive care unit diary on its own does not provide significant information and thus need to be complemented by information from the medical record and notes taken by family members. Therefore, the diary can be used as a complement that might increase patients' sense of coherence and facilitate recovery after intensive care.