Family member perspectives on intensive care unit in-person visiting restrictions during the COVID-19 pandemic: A qualitative study

BackgroundFamily member presence in the intensive care unit is important for patient well-being and recovery. Limitations to visits increase the risk of psychological distress in family members. During the COVID-19 pandemic, in-person visiting restrictions were introduced to prevent the spread of infection.PurposeTo explore the experience of in-person visiting restrictions imposed during the pandemic on family members of patients with COVID-19 admitted to an intensive care unit.MethodQualitative method with thematic analysis. Individual semi-structured telephone interviews were conducted.FindingsWe interviewed 21 family members. The results are presented in one overall theme with two main themes and five sub-themes. The theme ‘Striving for closeness even at a distance describes the experience of being kept at a physical distance when participants needed closeness the most. Even participants who were allowed in-person visits perceived a ‘distance’ due to personal protective equipment or because they could only view the patient from a window. Participants reported that contact with and information about the patient was of utmost importance. Visits were viewed as essential in providing for the patient’s wellbeing. Meaningful contact with the ICU team was vital for getting useful information. Phone calls became a lifeline, with digital aids such as video calls used occasionally to overcome the feeling of distance.ConclusionVisiting restrictions imposed during the COVID-19 pandemic made straightforward and comprehensible communication of information from the ICU team more essential to reduce family members’ perceptions of distance and exclusion from the intensive care unit.     

Families’ perspectives of participation in patient care in an adult intensive care unit: A qualitative study

BackgroundWhen a relative is admitted to the intensive care unit (ICU), stress, anxiety, and failure to cope may place families, and the patient, at risk for adverse psychological outcomes. Family participation in patient care may improve patient and family outcomes. However, to date, little is known about how families perceive and participate in patient care in ICU, and there is limited research to guide clinicians about supporting family participation in this context.ObjectiveTo describe family perspectives of participation in patient care in adult ICU.MethodsUsing a qualitative design, observation and interview data were collected from a convenience sample of 30 family members in the ICU at two metropolitan hospitals in Melbourne, Australia. An independent third party was used to recruit potential participants. Naturalistic observations and semi-structured interviews explored families’ actions and perceptions of participation. Data were integrated and subject to thematic analyses.FindingsThe major theme Families as part of the healthcare team reflected family perspectives of their own significant contribution to supporting their relative’s recovery while they were in ICU. Families' perception of their participation in patient care was characterised by three sub-themes: 1) Motivators for family participation; 2) Family roles during recovery; and 3) Influences on family participation. Families' perceived reassurance and companionship as important contributions to patient care.ConclusionFamilies perceived their contribution to the patient's psychosocial and emotional well-being to be one of the most important aspects of participation. Nevertheless, their role in the healthcare team was influenced by several motivational factors. Results of this study can inform further research to test the effectiveness of clinical practice and educational interventions aligned with family preferences to promote participation and enhance patient and family-centered care in ICU.     

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.     

Family satisfaction with care in the intensive care unit: A regional Australian perspective

ObjectiveMany patients admitted to an intensive care unit (ICU) are unable to make ongoing decisions of care for themselves during their ICU stay. The perspectives of families and other nominated decision makers are particularly important in forming a partnership with clinicians to provide effective person-centred care. The aim of this study is to evaluate family satisfaction with care in the ICU in regional NSW, Australia, and explore the relationship between the level of satisfaction and family characteristics.MethodsA cross-sectional survey design was conducted in two ICUs in regional NSW, Australia, using a validated family satisfaction questionnaire. The Family Satisfaction in the Intensive Care Unit survey calculates an overall family satisfaction score (FS-Total) and two subscales, measuring family satisfaction with care (FS-Care) and family satisfaction with decision-making (FS-DM).ResultsA total of 104 family members were surveyed, with a 53% response rate. The mean FS-Total score was high (85.58, standard deviation [SD] = 14.6), with FS-Care (92.94, SD = 15.71) ranked higher than FS-DM (81.84, SD = 19.16). Significant differences in mean FS-Total and FS-DM scores were reported by the partners/spouses (p = 0.009 and p = 0.003, respectively) and those who lived with the patient (p = 0.039 and p = 0.011, respectively). Levels of satisfaction were also impacted by communication, waiting room facilities, and visiting times.ConclusionsOpportunities exist to further explore and improve family satisfaction with care in ICUs in regional NSW, Australia, particularly for spouses and partners and those who co-reside with the patient. Developing family-friendly clinical spaces and waiting rooms that allow family privacy along with amenities that support comfort and rest throughout their ICU experience may improve satisfaction levels.     

The identification of family members' contribution to patients' care in the intensive care unit: a naturalistic inquiry

The admission of a patient to an intensive care unit (ICU) is recognized as being a stressful experience for their families. Many studies have focused on the needs of families within ICU, but few have highlighted the unique contribution that family members make towards patient care and recovery. Using a naturalistic approach, data were collected through observation, video recording, in-depth interviewing and reflective video analysis to explore the processes and factors underpinning families' contribution to patient care. The findings can be grouped into three themes: getting to know the patient through the family, family contribution to care and the nurses' role in supporting families of ICU patients. Families can have a very positive influence on the patient's care and recovery from ICU, but both the family members, and in turn the nursing staff, need to be supported appropriately if this valuable contribution to patient care is to be maximized and maintained.     

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.     

Staff experiences,perceptions of care,and communication in the intensive care unit during the COVID-19 pandemic in Australia

BackgroundIn 2020, during the first wave of the COVID-19 pandemic in Australia, hospital intensive care units (ICUs) revised patient care practices, curtailed visiting, and augmented the use of personal protective equipment to protect patients, staff, and the community from viral transmission.AimThe aim was to explore ICU staff experiences and perceptions of care and communication with patients during the COVID-19 pandemic to understand how alternative ways of working have influenced work processes, relationships, and staff morale.MethodsThis was a qualitative exploratory design study using audio-recorded and transcribed interviews with 20 ICU staff members. Data were analysed using thematic analysis.FindingsFour major themes were derived from the data: (i) Communication and connection, (ii) Psychological casualties, (iii) Caring for our patients, and (iv) Overcoming challenges. Patient care was affected by diminished numbers of critical care qualified staff, limited staff entry to isolation rooms, and needing to use alternative techniques for some practices. The importance of effective communication from the organisation and between clinicians, families, and staff members was emphasised. personal protective equipment hindered communication between patients and staff and inhibited nonverbal and verbal cues conveying empathy in therapeutic interactions. Communication with families by phone or videoconference was less satisfying than in-person encounters. Some staff members suffered psychological distress, especially those working with COVID-19 patients requiring extracorporeal membrane oxygenation. Moral injury occurred when staff members were required to deny family access to patients. Workload intensified with increased patient admissions, additional infection control requirements, and the need to communicate with families using alternative methods.ConclusionThe results of this study reflect the difficulties in communication during the early stages of the COVID-19 pandemic. Communication between staff members and families may be improved using a more structured approach. Staff reported experiencing psychological stress when separating families and patients or working in isolation rooms for prolonged periods. A flexible, compassionate response to family presence in the ICU is essential to maintain patient- and family-centred care.     

Opinions of families,staff, and patients about family participation in care in intensive care units

PurposeThe aims of the study were to assess opinions of caregivers, families, and patients about involvement of families in the care of intensive care unit (ICU) patients; to evaluate the prevalence of symptoms of anxiety and depression in family members; and to measure family satisfaction with care.Materials and MethodsBetween days 3 and 5, perceptions by families and ICU staff of family involvement in care were collected prospectively at a single center. Family members completed the Hospital Anxiety and Depression Scale (HADS) and a satisfaction scale (Critical Care Family Needs Inventory). Nurses recorded care provided spontaneously by families. Characteristics of patient-relative pairs (n = 101) and ICU staff (n = 45) were collected. Patients described their perceptions of family participation in care during a telephone interview, 206 ± 147 days after hospital discharge.ResultsThe numbers of patient-relative pairs for whom ICU staff reported favorable perceptions were 101 (100%) of 101 for physicians, 91 (90%) for nurses, and 95 (94%) for nursing assistants. Only 4 (3.9%) of 101 families refused participation in care. Only 14 (13.8%) of 101 families provided care spontaneously. The HADS score showed symptoms of anxiety in 58 (58.5%) of 99 and of depression in 26 (26.2%) of 99 family members. The satisfaction score was high (11.0 ± 1.25). Among patients, 34 (77.2%) of 44 had a favorable perception of family participation in care.ConclusionsFamilies and ICU staff were very supportive of family participation in care. Most patients were also favorable to care by family members.     

Family experience with intensive care unit care: Association of self-reported family conferences and family satisfaction

Purpose

A family conference is recommended as a best practice to improve communication in the intensive care unit (ICU), but this can be challenging given the setting. This study examined whether family members who reported that a family conference occurred had higher satisfaction than those who did not report that a conference was held.

Materials and Methods

The study used a retrospective data analysis of family satisfaction based on family member's responses to a questionnaire. Families of all the patients admitted to ICUs of 2 quaternary hospitals in an integrated health system were surveyed.

Results

The families of 457 patients who matched the inclusion and exclusion criteria were surveyed with a 55.6% response rate. Family satisfaction with decision making was significantly higher (83.6 vs 78.2, P = .0211) for families who reported that family conferences occurred. No significant difference in the satisfaction with care and overall satisfaction scores was found (84.2 vs 80.0, P = .10). Patients whose families reported a family conference were older and had higher mortality.

Conclusion

This study confirms that families who report attending family conferences are more satisfied with decision making in the ICU. This study highlights the need to increase communication in ICUs.     

Impact of a nurse-led family support intervention on family members' satisfaction with intensive care and psychological wellbeing: A mixed-methods evaluation

BackgroundFamilies of critically ill persons face uncertainty and experience distress during and after their close other's stay in an intensive care unit (ICU). Proactive nurse engagement and support is recommended to meet families' needs in the ICU, but little is known about its impact on quality of family care. We introduced a family support intervention that consisted of an interprofessional family support pathway and a new role of an advanced practice family nurse.ObjectivesThe aim of the study was to examine the effect of an advanced practice nurse–led family support intervention on family members' satisfaction, wellbeing, and psychological distress.MethodsWe conducted a quasi-experimental before-and-after study with embedded qualitative interviews in a Swiss University Hospital from March 2018 to July 2019 using a questionnaire (Family Satisfaction in the ICU-24 Survey, Hospital Anxiety and Depression Scale, and Impact of Event Scale-Revised-6) and qualitative interviews (n = 19) after patient discharge.ResultsFamilies in the intervention group (n = 75) showed a trend for increased overall satisfaction (difference of 5.544, 95% confidence interval [CI]: −0.11 to 11.20), a statistically significant increase in satisfaction with decision-making (7.258, 95% CI: 0.89 to 13.63), and a nonsignificant increase in satisfaction with care (4.178, 95% CI: −1.53 to 9.89). Psychological distress was higher in the intervention group, with depression reaching statistical significance (difference of 1.706, 95% CI: 0.16 to 3.25), which may be explained by longer ICU stays and higher proportion of deaths in the intervention group. Families receiving the intervention reported to be feeling cared for, well informed, and better able to cope. Data integration suggests that early onset, fit to need, and quality of intervention were the most important intervention characteristics impacting family wellbeing.ConclusionsOur study found that family members experience a nurse-led support intervention as beneficial for their wellbeing. It increased their satisfaction, but was unable to demonstrate a favourable impact on psychological distress.     

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.     

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.     

Family satisfaction in the intensive care unit: a quantitative and qualitative analysis

Purpose

To assess family satisfaction in the intensive care unit (ICU) and areas for improvement using quantitative and qualitative analyses.

Methods

Prospective cohort study performed in four (mixed surgical, neurological, and cardiological) intensive care units of a university hospital in Germany, using a translated and validated version of the Family Satisfaction in the ICU (FS-ICU) questionnaire, with questions answerable on a rating scale and three open-ended questions about strengths and weaknesses. Quantitative analysis was performed to identify items with low performance and high importance. For qualitative analysis, comments were coded and analyzed to identify important themes. Patient-related data were obtained from an electronic patient data management system.

Results

Participants were 215 family members visiting adult intensive care patients with length of stay over 48 h. Response rate was 28 %. Respondents were highly satisfied; summary scores were 78.3 ± 14.3 [mean ± standard deviation (SD)] on a scale of 0 (poor) to 100 (excellent). Regression analysis failed to identify association with patient- or family-related factors. The following themes for possible improvement emerged from both quantitative and qualitative analyses: patient agitation—consistency, clarity and completeness of information—emotional support—respect and compassion towards families. Families were also dissatisfied with the waiting room, ICU atmosphere, and amenities for visiting relatives.

Conclusions

Families report high satisfaction with intensive care. Nevertheless, there is room for improvement, in particular regarding how ICU staff communicate with families and provide emotional support.