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Corresponding author: Jennifer L. McAdam, RN, PhD, Department of Nursing, Dominican University of California, 50 Acacia Ave, San Rafael, CA 94901(e-mail: jennifer.mcadam{at}dominican.edu).
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Abstract |
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 Top Abstract Integrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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Notice to CE enrollees:A closed-book, multiple-choice examination following this article tests your understanding of the following objectives:
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Concern for the family members of ICU patients who are at high risk of dying is both a necessity and an integral aspect of providing holistic care in the ICU. Since 2003, clinical practice guidelines8 and a consensus document9 that support and encourage family-centered care in the ICU have been published. Recent recommendations for incorporating family-centered care include assessing psychological symptoms such as stress and anxiety levels of patients’ family members. Potential benefits of this care philosophy include improved satisfaction with care and reduced occurrence of symptoms for patients’ family members.8 Yet, before this recommendation can be incorporated into practice, more research is needed on what types of symptoms patients’ family members experience, the effects of these symptoms, and what types of interventions are most effective in reducing the symptoms and improving outcomes for both patients and their families.
Most research on family members in the ICU has been focused mainly on family members’ needs10–16 and satisfaction with care.13,15–20 Considerably less has been published on family members’ symptoms and even less on symptoms experienced by family members of ICU patients at high risk of dying. To provide appropriate care to both ICU patients and the patients’ family members, clinicians must first gain knowledge of family members’ symptoms. In this article, we critically review the current literature on what is known about symptoms experienced by family members in the ICU and factors that may influence those experiences. We highlight gaps in the literature, provide implications for practice, and suggest areas for future research.
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Integrated Literature Review |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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| Family members in the ICU could potentially suffer from clinically diagnosable psychological conditions.
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History of Symptom Research |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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Overall, the findings from these studies suggested that wives of ICU patients reported multiple emotions such as anxiety, depression, and fear.36–40 The findings also revealed that wives faced multiple stressors such as potential loss of their partner and family disruption during the wives’ experience in critical care.41–44 Although these studies provided a foundation for studies of symptoms experienced by patients’ family members, the results cannot be generalized because of the relatively small sample sizes, predominantly female samples, and the exploratory nature of the research.
| Traumatic stress scores are higher in families without advance directives compared to those with directives.
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It was not until the early 1990s that investigators45 understood that family members in the ICU could potentially have clinically diagnosable psychological conditions. Pérez-San Gregorio and colleagues45 studied 76 family members of gravely ill ICU patients with traumatic head injuries. They found that more than 50% of family members reported symptoms of depression, hypochondria, suicidal depression, low-energy depression, and anxious depression. Although these investigators focused on family members from a specific population of patients, they published one of the first studies to suggest that patients’ family members may have psychological symptoms that could be detrimental to the family members’ physical and mental health.
Several investigators have built on previous work by examining family members’ symptoms and associated risk factors. Most confirmed that family members have psychological symptoms such as anxiety, depression, and stress or symptoms of acute stress disorder (ASD), posttraumatic stress disorder (PTSD), and posttraumatic stress reaction (PTSR). This research is summarized in the following section.
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Survey Research on Stress, Depression, and Anxiety |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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), and the time frame for stress measurement varied from 24 hours after admission to 90 days after the patient’s death or discharge from the ICU. All of the studies focused on the family members’ own self-reports of symptoms.
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Factors associated with higher stress response scores and symptoms related to ASD, PTSD, and PTSR in patients’ family members have been reported. Azoulay et al,21 using a multivariate linear model, found that mean PTSR scores were significantly higher in females, children, and persons who thought the information regarding the patient’s condition was incomplete. Chui and Chan34 reported that females had significantly higher traumatic stress scores than did males (t = –4.60, P < .001). They also reported that family members had significantly higher traumatic stress scores if the family members had lower education levels (F = 3.0, P = .05) and the patient’s ICU admission was unplanned (t = –2.2, P = .03).34 Several investigators16,23,24,35 reported that stress response scores and ASD scores were higher for patients’ family members when the patient was admitted to the ICU, but tended to decrease by the time the patient was discharged. Other investigators,34 however, found that a longer stay for a patient was significantly associated with higher traumatic stress levels in the patient’s family members (r = 0.5, P < .001). Because length of stay was not clearly reported in 2 of the studies16,21 and because length of stay varied from a mean of 3 days23 to 26 days35 in the other studies, how much length of stay influences stress levels in patients’ family members is still unclear.
The effect of a patient’s death on family members’ traumatic stress and PTSR scores was assessed in only 2 of the 7 descriptive studies.21,22 Tilden et al22 studied traumatic stress levels in 74 family members of patients 2 months after the family members had to make end-of-life decisions in the ICU. The traumatic stress scores were significantly higher in family members of patients who did not have any form of advance directives than in family members of patients who had either verbal or written advance directives.22 Azoulay et al21 assessed PTSR scores in 234 family members of patients discharged from the ICU and compared the scores with those of 50 family members of patients who died in the ICU. The prevalence of PTSR was greater in family members of patients who had died in the ICU, particularly if the family member was involved with end-of-life decision making (81.3%).
Depression
A total of 1 longitudinal study35 and 4 descriptive studies21,25–27 on depression in family members were reviewed. Sample sizes were from 32 to 836 family members. Most of the studies included family members of patients in medical, surgical, and cardiac ICUs; only 1 study25 included pediatric ICU patients. The studies were mostly prospective and descriptive and were completed in multiple hospitals. Most of the investigators used the same instrument to assess depression, the Hospital Anxiety and Depression Scale48; one group used the Center for Epidemiologic Studies Depression Scale49 (Table 2). The time frames for measuring depression varied, from 3 to 5 days after admission, to 3 months after discharge, to the time of the patient’s death or discharge from the ICU.
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| Inconsistent information given to families about the patient’s condition is associated with higher depression symptoms.
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In general, the findings indicated that depression affected about 15%27 to 35%25,26 of patients’ family members. When investigators assessed factors associated with depression, they found that being a spouse of the patient (odds ratio [OR] = 2.1, P < .001) and being female (OR = 2.0, P < .001) significantly increased the risk for symptoms of depression.25 In addition, inconsistent information given to family members about the patient’s condition was associated with significantly higher risk of symptoms of depression (OR = 1.67, P = .04).25
| Medical ICU families have more negative feelings than do those in other types of ICUs.
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Pochard and colleagues25,26 assessed the impact of a patient’s severity of illness and death on family members’ symptoms of depression. In a study25 completed in 2001, the investigators found no significant correlation between the patient’s severity of illness or death and family members’ depression scores. However, in another study26 completed in 2005, the odds of family members of patients who died in the ICU having symptoms of depression were twice as high as those of family members of a patient who survived (OR = 2.09, P = .01). The patient’s severity-of-illness score also influenced depression in family members, but the influence was negligible.26 The discrepancy between these 2 studies could be explained by the differences in the patients in the 2 studies. Although no information was provided about patients’ diagnoses, the severity-of-illness scores were lower (median Simplified Acute Physiology Score II, 38 vs 42) and the length of stay was shorter (median, 9 days vs 14 days) in the first study25 in 2001 than in the follow-up study26 in 2005.
Anxiety
Several investigators21,26–29,35 examined anxiety in family members of ICU patients. Most of these studies were descriptive, and the sample sizes varied from 32 to 836 family members. The majority of the studies were conducted at a single center and were focused mainly on patients from medical, surgical, and cardiac ICUs. One study25 also included pediatric patients. Time frames used to measure anxiety varied, from 48 to 72 hours after a patient’s admission, to 3 months after discharge, to the patient’s death or discharge from the ICU. The main instruments used in these studies were the Spielberger State Trait Anxiety Inventory,50 the Hospital Anxiety and Depression Scale,48 and the Brief Symptom Inventory51 (Table 2
).
| Family members have high anxiety levels and moderate depression levels.
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The prevalence rate of anxiety in family members in several of the studies was from 35%27 to 73%.25,26 In other investigations, intensity levels of anxiety in family members ranged from moderate29 to high.28,35 Risk factors associated with an increase in symptoms of anxiety in patients’ family members included being a spouse of a patient,25,26,35 being a female family member,26,35 the patient’s having had an unplanned ICU admission, and having a lower educational status.28 Reider29 reported that family members of patients with neurological illness (t = 2.55, P = .01) and traumatic injuries (t = 2.04, P = .05) had significantly more anxiety than did other family members. Having no regular meetings with a physician or nurse also was significantly associated with an increased risk of anxiety in family members (OR = 1.36, P = .02), as was the patient having an absence of chronic disease (OR = 1.52, P = .02).25 Reider29 also reported that coping strategies may affect anxiety levels in family members, whereas Delva et al28 found that family needs may affect anxiety in family members.
In only 1 of the 7 descriptive studies26 was the prevalence of anxiety in family members of patients who died in the ICU (n = 91) compared with that in family members of ICU survivors (n = 435). Even though both groups had high prevalence rates of anxiety, the difference in the prevalence between the 2 groups was not significant.
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Qualitative Research on Family Symptoms |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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Titler et al32 used a phenomenological approach to assess the effect of critical care hospitalization on patients’ family members from multiple perspectives. The researchers interviewed and audiotaped 23 family members, 9 patients, and 12 ICU nurses. Both patients and family members had feelings of guilt, fear, and uncertainty. In addition, family members had potential stressors, such as marked changes in family relationships, multiple conflicts about the roles of the family members, and lack of communication within the family, that could cause symptoms. Nurses and family members differed in their perceptions of the impact of critical care on the families. Nurses perceived the impact as less severe than family members did.32
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Experimental Research on Family Symptoms |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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Lautrette et al3 used a randomized controlled trial design in 22 ICUs in France to test the effectiveness of a proactive communication intervention on reducing PTSD-related symptoms and symptoms of anxiety and depression in family members of ICU patients at the end of life. The intervention involved an end-of-life conference based on the mnemonic VALUE.53,54 This mnemonic includes specified guidelines where clinicians value what the family wishes to discuss, acknowledge the family members’ emotions, listen, ask questions in order to understand who the patient was as a person, and elicit questions from the family members. Lautrette et al3 found that the prevalence of PTSD-related symptoms was lower in the intervention group than in the control group (45% vs 69%, P = .01). They reported that the prevalence rates of anxiety and depression also were lower in the intervention group than in the control group (anxiety, 45% vs 67%; P = .02; depression 29% vs 56%; P = .03).
In another study, Chien et al13 used a quasi-experimental pretest-posttest design to determine the effectiveness of a needs-based education program on reducing anxiety levels in family members of patients in a medical ICU in Hong Kong. The intervention involved an hour-long educational session focusing on specific family members’ needs on both days 2 and 3 of the ICU stay. Compared with the group receiving standard care, the treatment group had significantly reduced anxiety levels (t =2.37, P =.006).13
Jones et al31 tested the effectiveness of a self-help educational module on reducing family members’ PTSD-related symptoms, depression, and anxiety and found that the intervention did not significantly reduce PTSD-related symptoms, anxiety, or depression in the treatment group. Halm30 used a quasi-experimental design to measure the effects of a support group intervention on anxiety in family members of patients in a surgical ICU. Halm also found no significant difference in reduction of anxiety levels between the treatment group (n = 25) and the control group (n = 30).
| Family members may suffer from symptoms throughout the ICU experience and long afterward.
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Researchers reported significant decreases in psychological symptoms in family members in 2 of the 4 intervention studies, whereas no significant results were reported in the other 2 studies. These findings may best be explained by the specificity of the interventions. Possibly, general interventions (eg, informational booklets and support groups) are not as effective as more individualized interventions (eg, targeting family members’ specific needs and using a specific proactive communication technique) for reducing the symptoms experienced by patients’ family members.
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Summary Critique of the Literature |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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). The main findings from the qualitative studies indicate that patients’ family members have negative emotions and multiple stressors that could affect family relationships, roles, and communication.
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| A structured care conference has been shown to significantly reduce symptoms of PTSD, anxiety, and depression in family members.
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Overall, self-report measures and surveys were the predominant methods used. Of the 4 experimental studies, only 2 yielded any statistically significant results. Therefore, despite promising data from these studies, assessments of family members’ symptoms and interventions are still at the early phase of development. Although these studies help build a knowledge base of symptoms experienced by patients’ family members, several limitations are apparent.
Convenience samples, small sample size, and a lack of description of characteristics of patients in the sample make it difficult to compare and generalize findings across settings and populations of patients. Some of the researchers23,24 did not describe the content of the survey items or the reliability of the tools, although several others16,21,22,25,26,28,35 provided more detail regarding the instruments used and the established reliability and validity of the tools. No consistent time frames were used to measure the symptoms (range was 48 hours after ICU admission to 3–6 months after ICU discharge or death), so it is difficult to know the best time to gather data on the symptom experience. Symptoms appeared to have occurred at all time frames, however, indicating that family members may have symptoms throughout the ICU experience and long afterward.
Another limitation of the research on symptoms experienced by patients’ family members is that most of the studies were completed in countries other than the United States, countries where the health care system and ICU cultures are vastly different from those in the United States. Finally, most studies were not focused on family members of ICU patients at high risk of dying, but on family members of patients who were discharged from the ICU. It therefore remains unclear whether family members of high-risk patients may have a different symptom experience.
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Implications for Practice |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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). These risk factors can be identified during a family assessment. Once the factors are identified, ICU clinicians can offer spiritual and emotional support to the family and intervene as appropriate with referrals to chaplain services or another service according to hospital policy. ICU clinicians can also be proactive in their approach with family care conferences. Incorporating a structured care conference that improves communication, such as the one discussed earlier by Lautrette et al, significantly reduces symptoms of PTSD, anxiety, and depression in family members who are making end-of-life decisions.3 In addition, ICU clinicians can have regular meetings with patients’ family members and provide honest and consistent information about the patient. This process may reduce anxiety and depression in patients’ family members.25,26
Finally, ICU clinicians can develop supportive relationships with family members by assessing the members’ needs and by showing compassion and respect for the members and the members’ decisions. This supportive relationship has been linked to an increase in satisfaction of patients’ families and could possibly reduce family members’ symptoms.55,56
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Directions for Future Research |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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Another area that requires further investigation is patient-related factors such as length of stay, severity of illness, and mortality rates found in previous studies.16,21,23,24,29 Because of the conflicting results, more descriptive research on these factors is required to see if the factors are associated with an increase in family members’ psychological symptoms. Knowledge of these factors will help clinicians identify those family members at greatest risk of symptoms and intervene as appropriate.
Prior research16,23,24,29,32,33 included samples consisting mostly of white, female, and educated family members. Therefore, our knowledge of the symptom experience in males and people of diverse cultural and educational backgrounds is limited. More descriptive research is needed on diverse samples of family members to assess if variables such as a family member’s cultural and educational background affect the family member’s symptoms. Future research should also focus on the role of spiritual care to assess the effect that such care may have on reducing family members’ symptoms. Research is also needed on other factors, such as the family’s coping skills, needs, and family functioning. These factors are associated with an increase in psychological symptoms in family members13,28,29,32,34 and in other critical care populations such as neonates in ICUs.57
Most researchers have focused mainly on psychological symptoms of patients’ family members such as stress, anxiety, and depression. Knowledge about other types of symptoms that family members may have, such as sleep and fatigue problems, appetite problems, or pain, have not been addressed. Physical symptoms must be assessed because these symptoms could affect overall well-being.
Most of the research on family symptoms has been cross-sectional and descriptive. Additional research should include mixed-methods research designs and longitudinal and interventional studies. Mixed-methods designs are more comprehensive and may be useful in identifying variables unique to patients’ family members by using both qualitative and quantitative strategies. Longitudinal studies would allow researchers to assess long-term consequences of symptoms, such as complicated grief or PTSD reactions, in family members. Interventional studies would allow researchers to test strategies to reduce symptoms in family members that may prevent long-term consequences of these symptoms.
Organizationally, studies are needed to assess hospital or ICU factors that may affect symptoms in patients’ family members. Studies are needed to assess ICU clinicians’ perceptions of the severity of family members’ symptoms and to determine whether those perceptions are similar to or different from the families’ reports of their symptoms. Any discrepancies could affect the amount of support and interventions offered to the family members. Studies are also needed to compare hospitals that have end-of-life protocols or palliative care programs with hospitals that lack such policies and programs. The results of these studies can help researchers determine if hospital policies on end-of-life care, such as end-of-life care conferences, affect the level of support for patients’ families and help reduce symptoms in family members.
Although research on end-of-life care in the ICU has raised potential ethical issues for investigators, these concerns are not unique to this field of study. Yet researchers in this field need to ask appropriate research questions, use appropriate methods, and provide valid findings that are generalizable. Investigators should ensure that the consent process remains thoughtful and that the study design ensures maximum benefits while minimizing risks to participants.58
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Conclusion |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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FINANCIAL DISCLOSURES
None reported.
Now that you’ve read the article, create or contribute to an online discussion on this topic. Visit www.ajcconline.org and click "Respond to This Article" in either the full-text or PDF view of the article.
For more about helping the families of patients in the intensive care unit, visit the Critical Care Nurse Web site, www.ccnonline.org, and read the article by Carter and Clark, "Assessing and Treating Sleep Problems in Family Caregivers of Intensive Care Unit Patients" (February 2005).
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REFERENCES |
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TopAbstractIntegrated Literature ReviewHistory of Symptom ResearchSurvey Research on Stress,...Qualitative Research on Family...Experimental Research on Family...Summary Critique of the...Implications for PracticeDirections for Future ResearchConclusionReferences |
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