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.     

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.     

The impact of family visitor restrictions on healthcare workers in the ICU during the COVID-19 pandemic

PurposeTo obtain information on how family visitor restriction during the COVID-19 pandemic has impacted the workplace experience of physicians and nurses in the medical intensive care unit, and to assess differences by profession.Materials and methodsWe developed a survey containing closed- and open-ended questions, applying both quantitative and qualitative analyses to our results.ResultsOf the 74 respondents, 29 (38%) were nurses and 45 (62%) were physicians. Nurses reported positive changes to daily workflow and the ability to provide medical care, while physicians reported negative changes in these areas. Both groups reported decreased comprehension and increased distress among families, and decreased ability to provide end-of-life care. For the qualitative analysis, eight themes were identified: the patient’s room as space, creation of a new space through virtual communication, time, increased complexity of care, challenges around the use of technology, adjustments to team roles and responsibilities, desire for families to return, and internal tension.ConclusionIntensive care physicians and nurses reported both positive and negative effects of family visitor restriction during the COVID-19 pandemic, with significant differences based on profession. Both groups expressed concern for an overall negative impact of visitor restriction on healthcare workers, patients, and their families.     

Family support in intensive care units during COVID-19 visit ban: A multinational Delphi Study during first COVID-19 wave

ObjectivesThis study assessed opinions and experiences of healthcare professionals, former patients and family members during the first wave of the COVID-19 pandemic and focuses on challenges in family-centred care for intensive care unit patients and affected families.Research methodology/DesignA two-round modified Delphi process assessed the opinions and experiences of experts such as healthcare professionals, former patients and their families (n = 151).SettingThis study was conducted across four countries in Europe.ResultsIn total, 121 participants (response rate 80.13%) answered the first Delphi round; the second was answered by 131 participants (response rate 86.75%). Participants perceived family support in the intensive care unit as highly important during the COVID-19 pandemic. Enabling contact amongst patients, families and clinicians is regarded as essential to build hope and confidence in the treatment and the recovery process. The extraordinary situation led to the implementation of new communication structures such as video calls and websites.ConclusionA consensus was reached between healthcare professionals that virtual contact is essential for patients with COVID-19 and their families during visit restrictions. This should be done to establish confidence in the treatment.     

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.     

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.     

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.     

Engaging parents of hospitalized neonates during a pandemic

BackgroundEngaging families through patient- and family-centered care (PFCC), the NICU nurse upholds the core concepts providing holistic care. The novel coronavirus (COVID-19) pandemic altered the daily routine of visiting parents to hospitals around the nation, particularly for pediatric and neonatal populations.MethodsThis paper describes innovative strategies implemented in a large Level IV NICU to promote the core concepts of PFCC that ensured parent-infant bonding while limiting exposure to a pandemic infection, such as COVID-19.DiscussionStrategies discussed include virtual visits between parents and infants to promote bonding; virtual parent support groups to encourage information sharing; remote music therapy options which included take-home music kits; diaries, albums, and celebration boards to support participation; among others. Parent collaboration throughout implementation promoted partnership.ConclusionUtilizing a variety of unique and innovative approaches to promote PFCC strategies became a critical component of routine planning and care delivery for one large neonatal intensive care unit.     

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.     

A multi-faceted,family-centred nutrition intervention to optimise nutrition intake of critically ill patients: The OPTICS feasibility study

BackgroundCritically ill patients are at risk of developing malnutrition which contributes to functional decline and hospital re-admission. Strategies to promote nutritional intake have had a modest effect on protein-calorie intake. None have addressed the recovery trajectory of critical illness or incorporated family as advocates.ObjectivesWe evaluated the feasibility and acceptability of a family-centred intervention designed to optimise nutrition during and following recovery from critical illness.DesignA prospective cohort study.SettingTwo Australian adult intensive care units.ParticipantsA convenience sample of 49 patients and their families was recruited. Patients ≥18 years of age anticipated to require mechanical ventilation for at least 2 days were eligible, provided their family visited regularly and were able to communicate in English. Health care professionals including doctors (n = 4), nurses (n = 20) and dietitians (n = 2) also participated.MethodsDemographic data were obtained from participants. Recruitment and retention informed study feasibility. Individual and group interviews informed participant views on the acceptability, perception of and experience with the intervention. Inductive analysis was used to analyse qualitative data.Results187 (15.8%) patients met the eligibility criteria; 49 patients and 51 family members consented to participate for a 20.3% consent failure rate. We interviewed 33 (67.3%) family members and 13 (43.4%) patients, all of whom considered the intervention acceptable and who would participate in a similar intervention again, given the opportunity. Inductive analysis of qualitative data from all participants identified three themes: variability in in-hospital nutrition support, families as advocates for optimal nutrition, and partnering with health care providers.ConclusionWe described a feasible and acceptable family centred intervention that may be effective in promoting nutrition intake in critically ill patients. Further research is required to examine contextual factors impacting implementation of family-centred interventions, particularly those that involve active family participation and advocacy.     

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.     

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.     

Development and initial validation of the Swedish Family Satisfaction Intensive Care Questionnaire (SFS-ICQ)

ObjectivesMeasuring patients satisfaction is an important part of continuous quality improvement in health care. In intensive care, family satisfaction is often used as a proxy for patient experience. At present, no suitable instrument to measure this has been fully validated in Sweden. The purpose of this study was to develop and validate a questionnaire intended to evaluate families’ satisfaction of quality of care in Swedish intensive care units.MethodsBased on literature and the modification of pertinent items in two existing North American questionnaires, a Swedish questionnaire was developed. Content validity was assessed by experts, and the cognitive method Think Aloud was used with twelve family members of intensive care patients in two different intensive care units. Data was analysed using qualitative content analysis.FindingsSeven items in the questionnaire were identified as problematic, causing eight problems concerning questioning of content and 23 concerning misunderstanding. Six of these items were changed in order to be understood the way they were intended, and one item was removed.ConclusionA family satisfaction questionnaire applicable in Swedish intensive care units has been developed and validated for respondents’ understanding of the questions being asked. However, further psychometric testing should be performed when more data are available.     

A co-design of clinical virtual care pathways to engage and support families requiring neonatal intensive care in response to the COVID-19 pandemic (COVES study)

BackgroundIn response to the COVID-19 pandemic, family presence restrictions in neonatal intensive care units (NICU) were enacted to limit disease transmission. This has resulted in communication challenges, negatively impacting family integrated care.AimTo develop clinical care pathways to ensure optimal neonatal care to support families in response to parental presence restrictions imposed during the COVID-19 pandemic.MethodsAn agile, co-design process utilizing expert consensus of a large interdisciplinary team and focus groups and semi-structured interviews with families and HCPs were used to co-design clinical virtual care pathways.ResultsThree clinical virtual care pathways were co-designed: (1) building and maintaining relationships between family and healthcare providers; (2) awareness of resources; and (3) standardized COVID-19 messaging. Modifications were made to optimize uptake and utilization in the clinical areas.ConclusionClinical care virtual pathways were successfully co-designed to meet these needs to ensure more equitable family centered care.