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.     

Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study

STUDY OBJECTIVES: More than two thirds of family members visiting intensive care unit (ICU) patients have symptoms of anxiety or depression during the first days of hospitalization. Identifying determinants of these symptoms would help caregivers support families at patient discharge or when death is imminent. DESIGN AND SETTING: Prospective multicenter study including 78 ICUs (1184 beds) in France. PARTICIPANTS: Family members completed the Hospital Anxiety and Depression Scale on the day of patient discharge or death to allow evaluation of the prevalence and potential factors associated with symptoms of anxiety and depression. RESULTS: Three hundred fifty-seven patients were included in the study, and 544 family members completed the Hospital Anxiety and Depression Scale. Symptoms of anxiety and depression were found in 73.4% and 35.3% of family members, respectively; 75.5% of family members and 82.7% of spouses had symptoms of anxiety or depression (P = .007). Symptoms of depression were more prevalent in family members of nonsurvivors (48.2%) than of survivors (32.7%) (P = .008). The multivariate model identified 3 groups of factors associated with symptoms: (1) patient-related: severity as assessed by the Simplified Acute Physiology Score II (odds ratio [OR] 1.017 per point) and patient age (OR 0.984 per year) predicted anxiety, and Simplified Acute Physiology Score II (OR, 1.015 per point), patient death (OR 2.092), and patient age (OR 0.981) predicted depression; (2) family-related: the spouse predicted anxiety (OR 2.085); and (3) ICU-related: a room with more than 1 bed (OR 1.539) predicted depression. CONCLUSION: The prevalence of symptoms of anxiety and depression remains high at the end of the ICU stay, whether the patient is well enough to be discharged or is near death.     

Important clinician information needs about family members in the intensive care unit

PurposeClinicians often lack key information regarding intensive care unit (ICU) families. Our objective was to identify (1) important information for clinicians to know about ICU families when making decisions and (2) important information for families to know about patients from clinicians.Materials and methodsWe identified important information items through a literature review and semistructured interviews. A separate cohort of family members, nurses, and physicians from 2 ICUs in a single institution were asked to prioritize the identified information as necessary for decision making.ResultsWe identified 21 items important for clinicians to know about families and 32 items important for families to know about patients from clinicians. Themes important for clinicians to know about family members included family background, questions, understanding, goals, concerns, well-being, and requests for additional help. Themes important for families to know about the patient included diagnosis, treatments, prognosis, clinical status, schedule, comfort, goals of care, medical team, and family participation.ConclusionsThrough qualitative and quantitative analysis, we identified important information for ICU clinicians to know about family members and for family members to know about patients. The identified information can be used to guide strategies and tools to improve assessment of and communication with families.     

Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units

OBJECTIVE: To evaluate the opinions of intensive care unit staff and family members about family participation in decisions about patients in intensive care units in France, a country where the approach of physicians to patients and families has been described as paternalistic. DESIGN: Prospective multiple-center survey of intensive care unit staff and family members. SETTING: Seventy-eight intensive care units in university-affiliated hospitals in France. PATIENTS: We studied 357 consecutive patients hospitalized in the 78 intensive care units and included in the study starting on May 1, 2001, with five patients included per intensive care unit. INTERVENTIONS: We recorded opinions and experience about family participation in medical decision making. Comprehension, satisfaction, and Hospital Anxiety and Depression Scale scores were determined in family members. MEASUREMENTS AND MAIN RESULTS: Poor comprehension was noted in 35% of family members. Satisfaction was good but anxiety was noted in 73% and depression in 35% of family members. Among intensive care unit staff members, 91% of physicians and 83% of nonphysicians believed that participation in decision making should be offered to families; however, only 39% had actually involved family members in decisions. A desire to share in decision making was expressed by only 47% of family members. Only 15% of family members actually shared in decision making. Effectiveness of information influenced this desire. CONCLUSION: Intensive care unit staff should seek to determine how much autonomy families want. Staff members must strive to identify practical and psychological obstacles that may limit their ability to promote autonomy. Finally, they must develop interventions and attitudes capable of empowering families.     

Surgical intensive care unit clinician estimates of the adequacy of communication regarding patient prognosis

Introduction  

Intensive care unit (ICU) patients and family members repeatedly note accurate and timely communication from health care providers to be crucial to high-quality ICU care. Practice guidelines recommend improving communication. However, few data, particularly in surgical ICUs, exist on health care provider opinions regarding whether communication is effective.     

Spiritual care of families in the intensive care unit

OBJECTIVES: There is growing recognition of the importance of spiritual care as a quality domain for critically ill patients and their families, but there is a paucity of research to guide quality improvement in this area. Our goals were to: 1) determine whether intensive care unit (ICU) family members who rate an item about their spiritual care are different from family members who skip the item or rate the item as "not applicable" and 2) identify potential determinants of higher family satisfaction with spiritual care in the ICU. DESIGN: Cross-sectional study, using data from a cluster randomized trial aimed at improving end-of-life care in the ICU. SETTING: ICUs in ten Seattle-area hospitals. SUBJECTS: A total of 356 family members of patients dying during an ICU stay or within 24 hrs of ICU discharge. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Family members were surveyed about spiritual care in the ICU. Chart abstractors obtained clinical variables including end-of-life care processes and family conference data. The 259 of 356 family members (73%) who rated their spiritual care were slightly younger than family members who did not rate this aspect of care (p = .001). Multiple regression revealed family members were more satisfied with spiritual care if a pastor or spiritual advisor was involved in the last 24 hrs of the patient's life (p = .007). In addition, there was a strong association between satisfaction with spiritual care and satisfaction with the total ICU experience (p < .001). Ratings of spiritual care were not associated with any other demographic or clinical variables. CONCLUSIONS: These findings suggest that for patients dying in the ICU, clinicians should assess each family's spiritual needs and consult a spiritual advisor if desired by the family. Further research is needed to develop a comprehensive approach to ICU care that meets not only physical and psychosocial but also spiritual needs of patients and their families.     

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.     

Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.     

A view from the other side

OBJECTIVE: The environment in our intensive care units (ICUs) often serves the convenience of the staff who work in the ICU, rather than the critically ill patients and their loved ones who are, as a family unit, the objects of our care. OBSERVATIONS: Critically ill patients, especially those with high acuity, require close bedside attention. Continuous monitoring, frequent physical evaluations, invasive procedures, and other demands of bedside care are just some of the processes in the ICU that require heightened attention from ICU clinicians. But the fact that we "have a lot to do" at the bedside of critically ill patients has led to an unfortunate environment in many ICUs, one in which the needs of families are not only considered secondary to the convenience of ICU personnel, but are frequently dismissed as burdensome, unreasonable, and even counter to good-quality patient care. Perhaps this is why there are reports in the literature of family concerns about less than satisfactory interactions with ICU clinicians. The attitude we have toward families is an important part of the care we offer to patients in the ICU, and it can have a profound effect on the health of our patients' families. In palliative care circles, it has long been understood that the "unit of care" is both the patient and the family. Although we are moving in that direction in critical care, many ICUs may not always reflect an appreciation of the therapeutic potential or devastating consequences of the attitudes in the ICU. CONCLUSION: The evolution of our understanding of care for critical illness should include a different approach to families and visiting hours in the ICU. One that balances the need of family members to be with their loved ones at a time of critical illness and the need of ICU clinicians to conduct efficient bedside care.     

End-of-life care for the critically ill: A national intensive care unit survey

OBJECTIVE: One in five Americans dies following treatment in an intensive care unit (ICU), and evidence indicates the need to improve end-of-life care for ICU patients. We conducted this study to elicit the views and experiences of ICU directors regarding barriers to optimal end-of-life care and to identify the type, availability, and perceived benefit of specific strategies that may improve this care. DESIGN: Self-administered mail survey. SETTING: Six hundred intensive care units. PARTICIPANTS: A random, nationally representative sample of nursing and physician directors of 600 adult ICUs in the United States. INTERVENTIONS: Mail survey. MEASUREMENTS AND MAIN RESULTS: We asked participants about barriers to end-of-life care (1 = huge to 5 = not at all a barrier), perceived benefit of strategies to improve end-of-life care, and availability of these strategies. From 468 ICUs (78.0% of sample), 590 ICU directors participated (406 nurses [65.1% response] and 184 physicians [31.7% response]). Respondents had a mean of 16.6 yrs (sd 7.6 yrs) of ICU experience. Important barriers to better end-of-life care included patient/family factors, including unrealistic patient/family expectations 2.5 (1.0), inability of patients to participate in discussions 2.7 (0.9), and lack of advance directives 2.9 (1.0); clinician factors, which included insufficient physician training in communication 2.9 (1.1) and competing demands on physicians' time 3.0 (1.1); and institution/ICU factors, such as suboptimal space for family meetings 3.5 (1.2) and lack of a palliative care service 3.4 (1.2). More than 80% of respondents rated 14 of 14 strategies as likely to improve end-of-life care, including trainee role modeling by experienced clinicians, clinician training in communication and symptom management, regular meetings of senior clinicians with families, bereavement programs, and end-of-life care quality monitoring. However, few of these strategies were widely available. CONCLUSIONS: Intensive care unit directors perceive important barriers to optimal end-of-life care but also universally endorse many practical strategies for quality improvement.     

Understanding disparities in aggressive care preferences between patients with terminal illness and their family members

We examined the factors associated with the disparity in aggressive care preferences between patients with terminal cancer and their family members. Two hundred forty-four consecutive pairs recruited from three university hospitals participated in this study. Each pair completed questionnaires that measured two major aggressive care preferences—admission to the intensive care unit (ICU) and the use of cardiopulmonary resuscitation (CPR). Sixty-eight percent of patients and their family members were in agreement regarding admission to the ICU and 71% agreed regarding CPR. Regarding admission to the ICU, younger, unmarried patients and patients who preferred to die in an institution were more likely to have a different preference from their family caregivers. Regarding CPR, younger patients and patients from severely dysfunctional families were more likely to have a different preference from their family caregivers. Elucidation of the factors associated with such disparities should help reduce them.     

家属参与老年癌症患者住院护理的活动及影响因素

目的探讨中国文化背景下家属参与老年癌症患者住院护理的各种活动、意愿及影响因素.方法运用描述性和定性的研究方法,通过访谈和观察的方式收集资料.收集到的资料采用定性分析方法分析.结果①家属参与老年癌症患者的住院护理活动表现在对患者的心理情绪支持、饮食营养护理、舒适护理、活动和安全护理、治疗相关的护理、经济及过渡期护理六个方面.②家属的参与使患者获得安全感和归属感,得到更细心、耐心和周到的照顾,并在一定程度上保护了自尊和隐私.家属在参与护理中表达自己的爱与关怀,满足了亲近患者的需要以及使患者获得舒适和安慰的需要.结论①家属参与住院护理是患者和家属的共同意愿,应重视家属在住院护理中的作用.②护理人员应该考虑患者及其家属的感受和期望,满足多元需求,为家属提供参与护理的机会.     

Family members’ experiences of “wait and see” as a communication strategy in end-of-life decisions

Purpose

The aim of this study is to examine family members’ experiences of end-of-life decision-making processes in Norwegian intensive care units (ICUs) to ascertain the degree to which they felt included in the decision-making process and whether they received necessary information. Were they asked about the patient’s preferences, and how did they view their role as family members in the decision-making process?

Methods

A constructivist interpretive approach to the grounded theory method of qualitative research was employed with interviews of 27 bereaved family members of former ICU patients 3–12 months after the patient’s death.

Results

The core finding is that relatives want a more active role in end-of-life decision-making in order to communicate the patient’s wishes. However, many consider their role to be unclear, and few study participants experienced shared decision-making. The clinician’s expression “wait and see” hides and delays the communication of honest and clear information. When physicians finally address their decision, there is no time for family participation. Our results also indicate that nurses should be more involved in family–physician communication.

Conclusions

Families are uncertain whether or how they can participate in the decision-making process. They need unambiguous communication and honest information to be able to take part in the decision-making process. We suggest that clinicians in Norwegian ICUs need more training in the knowledge and skills of effective communication with families of dying patients.

     

Improving end-of-life care: gathering suggestions from family members

Tertiary care centers are criticized for not providing a peaceful death experience. This qualitative study was undertaken to ascertain suggestions family members (N = 29) might have to improve the situation. Family members made three major suggestions where the negative effects of the complex hospital system might be ameliorated when caring for dying patients: facilitate improved interaction between the dying patient and the family; improve interactions between caregivers and patients/families; and create a setting, or milieu, more conducive to these interactions. Further, family members related an overwhelming need to be close physically to their dying loved one; to be given permission, instruction, and opportunities to touch their loved one; to receive more information from caregivers; and to have their and their loved one's personhood acknowledged and respected. Thus, nurses should engage in respectful, personalized conversations with patients and families that allow them to define the dying experience they desire.     

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 use and usefulness of ICU diaries to support family members of critically ill patients

PurposeTo analyze and describe the use and usefulness of the ICU diary to support family members of critically ill patients.Materials and methodsA socio-technical systems model (SEIPS 2.0) guided data collection and analysis in this study aimed to gain a holistic understanding of factors that shape ICU diary processes and family requirements for support. Triangulated data sources, including interviews, observations, and photographs, were content analyzed for person, task, tool, and context attributes determining the use and usefulness of ICU diaries. Researchers recruited family members of critically ill patients admitted to ICUs in two hospitals (urban, rural) in the southeastern United States.ResultsNineteen female (100%) family members participated in this study. ICU diaries were used and adapted by family members to cope with the ICU experience in multiple ways. Results indicate that staff support, easy access, embedded instructional format, early initiation, and family ownership facilitated ICU diary use by family members. The ICU diary was useful as a medium to process emotions and gain insights, reduce stress, track information, and communicate with the staff and the patient.ConclusionsThe ICU diary is useful to family members as a stress reduction, information management, and communication tool. The design of ICU diary implementations must address system factors to assure family members receive benefits from diary use. Further research is needed to expand our understanding of the optimal structure, process, and content of ICU diary implementations.     

In-house, overnight physician staffing: a cross-sectional survey of Canadian adult and pediatric intensive care units

OBJECTIVE: Physician staffing is an important determinant of patient outcomes following intensive care unit (ICU) admission. We conducted a national survey of in-house after-hours physician staffing in Canadian ICUs. DESIGN:: Cross-sectional survey. SETTING: Canadian adult and pediatric ICUs. PARTICIPANTS: ICU directors. INTERVENTIONS: ICU directors of Canadian adult and pediatric ICUs were surveyed to describe overnight staffing by interns, residents, critical care medicine trainees, clinical assistants, and ICU physicians in their ICUs. MEASUREMENTS AND MAIN RESULTS: Data were collected regarding hospital and ICU demographics and ICU staffing. For ICUs with in-house overnight physicians, we documented physician experience, shift duration, and clinical responsibilities outside the ICU. We identified 98 Canadian ICU directors, of whom 88 (90%) responded. Dedicated in-house physician coverage overnight was reported in 53 (60%) ICUs, including 13 (15%) in which ICU staff physicians stayed in-house overnight. Compared with ICUs without in-house physicians, those with in-house physicians had more ICU beds (15 vs. 8.5, p=.0001) and fewer ICU staff physicians (5 vs. 7, p=.03). For the 271 physicians who provide overnight staffing, the median level of postgraduate experience was 3 yrs (range, <1 yr, >10 yrs); 129 (48%) had <3 months of ICU experience. Most shifts (83%) were >20 hrs long. CONCLUSIONS: In-house overnight physician staffing in Canadian ICUs varies widely. Only a minority of ICUs comply with the 2003 Society of Critical Care Medicine guidelines for adult ICUs recommending continuous in-house staffing by ICU staff physicians. The duration of most ICU shifts raises concern about workload-associated fatigue and medical error. The impact of current nighttime staffing requires further evaluation with respect to patient outcomes.     

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.