Recognizing the needs of family members of neuroscience patients in an intensive care setting.
Critically ill (Care and treatment)
Brain (Care and treatment)
Pain (Care and treatment)
Patients (Care and treatment)
Prachar, Tanya Lynn
Moss, Bridget L.
Burns, Suzanne M.
|Publication:||Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2010 American Association of Neuroscience Nurses ISSN: 0888-0395|
|Issue:||Date: Oct, 2010 Source Volume: 42 Source Issue: 5|
|Topic:||Event Code: 200 Management dynamics Computer Subject: Company business management|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
This quantitative study was designed to identify the needs of family members of neuroscience patients. An adaptation of the Critical Care Family Needs Inventory was used to identify the top 10 needs of neuroscience families. Results were compared on the basis of whether the admission was planned or emergent. Needs were further examined on the basis of a family's perception of patient prognosis and communication with physicians and nurses. Most needs were recognized as being either important or very important with the need for information about the patient's care receiving the highest rating. Significant differences were noted between family members who expected their loved one to return to normal or with a slight decrease in activity versus those who expected their loved one to have a moderate to complete inability to perform normal activities. Communication with nurses was rated excellent or good significantly more often than communication with physicians.
The needs of neuroscience patients and their family members are unique because of the diversity of this patient population. These needs may be exacerbated in the highly stressful environment of the intensive care unit (ICU). The patient's disease process often creates a communication barrier, so most communication occurs between the medical team and the patients' family. Families of all patients, but especially neurological patients, must be viewed as partners in patient care and their needs recognized and supported by the healthcare team. This study was designed to identify the needs of family members of critically ill neuroscience patients so that appropriate interventions may be implemented.
Over the last 30 years, the value of patient-centered care that includes the family has been increasingly emphasized. The Institute of Medicine (IOM) initiated a movement toward patient-centered care, which is further reinforced by the American College of Critical Care Medicine Task Force for improving patient care in the ICU (Davidson et al., 2007). Included in the IOM's dimension of patient-centered care is the emphasis on family involvement in the patient's plan of care as well as "recognizing their needs and contributions" (IOM, 2001, p. 50).
Molter (1979) was one of the first to research the needs of family members of critically ill patients. In a landmark study, she asked family members of critically ill patients to rate 45 need statements according to their importance, resulting in the development of the Critical Care Family Needs Inventory (CCFNI). Further research by Leske (1991) refined these need statements into five distinct needs categories: the need for assurance, proximity, information, comfort, and support. Recognizing the importance of involving the family in healthcare decisions of the critically ill, the American Association of Critical Care Nurses developed evidence-based practice protocols that address family needs and suggest appropriate strategies to address them (Leske & Pasquale, 2007).
Research regarding family needs is plentiful and diverse. Although it is widely acknowledged that families have legitimate needs that should be addressed, study results vary related to the importance of selected needs (Bond, Draeger, Mandleco, & Donnelly, 2003; Mendonca & Warren, 1998; Tin, French, & Leung, 1999). Despite the widespread interest in identifying family needs, it is noteworthy how often needs are rated by family members as unmet (Auerbach et al., 2005; Bond et al., 2003; Mendonca & Warren, 1998; Tin et al., 1999). Complicating the issue is the fact that there is a discrepancy between the families' and the nurses' perception of which needs are important and expectations of the nurse's role (Fox-Wasylyshyn, El-Masri, & Williamson, 2005; Tin et al., 1999). This is particularly true for the need subcategories of proximity and information. Interestingly, Tin et al. (1999) found that although most nurses purported to be advocates of having families at the bedside, proximity needs of families were underrated by nurses. Likewise, the same study reported that nurses significantly underrated the need for the family to receive information once a day. This perhaps explains why families report a frustrating lack of adequate and consistent information (Bond et al., 2003). Bond et al. (2003) reported that information is so important to family members that they are often willing to forsake hope for honest and forthright information.
It is widely acknowledged that having a loved one in the ICU is a stressful event for the family. This stress may be compounded for the family of the critically ill neuroscience patient as neurological illnesses can often occur suddenly and may leave the patient unable to communicate or interact with their loved ones. Furthermore, neuroscience patients can have lasting and severe physical and cognitive deficits, leaving the family in turmoil over their future. Recognizing that neuroscience patients and their families are a specialized population, the authors of this study wondered if the needs of family members of neuroscience ICU patients were similar to or different from the needs of families of patients in other types of ICUs. In a small study (n = 26), Mathis (1984) compared the needs of families of patients with acute brain injuries to the needs of families of patients who did not have an acute brain injury and found that the two groups differed significantly in perceived importance of their needs as measured on the CCFNI. Engli and Kirsivali-Farmer (1993) also compared the needs of family members of critically ill patients with acute brain injury and those without in a replication of Mathis's study. Unlike Mathis, they took their study one step further to ask if those needs were being met and by whom. The results of their study mirrored those of Mathis in that families of patients with acute brain injury perceive their personal needs differently than do families of patients without acute brain injury. Furthermore, most needs were reported as being met by physicians (53%) and nurses (33%). A small qualitative study by Bond et al. (2003) reported that the top four family needs of traumatic brain-injured patients were the need to know, to receive consistent information, to be involved in the patient's care, and to make sense of the experience. In another small qualitative study, Lam and Beaulieu (2004) found that families whose loved one was admitted suddenly to a neuro-ICU need to know that their loved ones are getting the best care possible and need to maintain a connection. The authors reported that families engage in various activities directed at meeting those needs, something the authors referred to as the bedside phenomenon. This is similar to the findings of Bond et al., who reported that family members seek out information and actively become involved in the patient's care to meet their needs. A recent study by Hinkle, Fitzpatrick, and Oskrochi (2009) included a number of families of neuroscience patients; however, their findings are limited by the fact that less than half of their sample came from neuroscience ICUs.
The purpose of this study was to identify the primary needs of family members of critically ill neuroscience patients. We also sought to determine if the family needs would be different if the admission was planned versus emergent, on the basis of the family's perception of the patient's prognosis, and by perception of communication with the physicians and nurses.
A prospective descriptive research design, using survey methodology, was used to determine the needs of family members of neuro-ICU patients.
This study was conducted on a convenience sample of 111 family members of neuroscience patients in a 12-bed neuroscience intensive care unit (NICU) at a tertiary university medical center. The unit admits approximately 100 neurological and neurosurgical patients a month. Patient diagnoses include, but are not limited to, subarachnoid hemorrhage, intracranial hemorrhage, ischemic stroke, tumor resection, traumatic brain injury, seizures, Guillain Barre syndrome, and myasthenia gravis. Data on patient diagnosis were not collected, but patients with strictly orthopedic spine diagnosis who had no other neurological impairment and patients who were temporarily boarding in our unit from other services were excluded.
For this study, a family member was defined as any relative of the patient or any individual who visited the patient and was permitted (by patient or next of kin) to receive information about the patient's medical care. Up to two individuals from the same family were allowed to participate. The eligibility criteria for family members participating in the study were as follows: 18 years or older, spoke and understood English, physically present in the ICU, and the patient's NICU stay was greater than or equal to 24 hours.
Sixty percent of the patients were women, and 40% were men, with a mean age of 52 years. The average age of the family member responding to the survey was 45 years (61% women). Most responders, 72% (78 total), reported that the patient's admission was unplanned compared with the 28% (30 total) who identified the admission as planned. The most common relationship of the participant to the patient was that of child (34%). The rest were identified as spouse (30%), parent (16%), and friend (20%).
This study used the CCFNI designed by Molter (1979). Reliability and construct validity of the instrument were tested by Leske (1991), and the tool was found to be a psychometrically sound measure of family needs. Leske's research also demonstrated that the need statements within the CCFNI can be conceptualized into five distinct need categories: the need for support, the need for information, the need for comfort, the need for proximity, and the need for assurance. In an attempt to further isolate the needs of families of neuroscience patients specifically, several supplemental questions were developed by the NICU study team and added to the CCFNI (Table 1). A demographic data collection sheet was included with the survey.
Permission from the institutional review board was granted to perform the study. Once a potential participant was identified and verbal consent was obtained, the family member was taken to a private room where one of the study investigators explained the study in detail and the family member was given a copy of the CCFNI with supplemental questions and a demographic questionnaire to complete. The participant was given the option of reading and completing the survey on his own or having the investigator read the survey aloud to him. The study investigator interacting with the participant could not be a nurse who had cared for the patient before the survey completion. To help maintain anonymity, the participant placed the completed survey in a closed drop box that was specifically designed for the study.
Demographic characteristics and responses from the CCFNI were tabulated and summarized. Individual needs were ranked by the proportion of respondents naming that need as "important." The items were also ranked according to the average rank assigned by respondents, with a value of 1 as not important and 4 as very important. McNemar's test (Rosner, 2006) was used to compare respondents' perceptions of communication with physicians and nurses. This test is used to compare proportions in matched samples; here, the matching results from the family rating communication with both physicians and nurses. Two-sample methods were used to compare survey responses between patients whose visits were planned versus those whose visits were emergent. In this case, bootstrap methods were used to create 95% confidence intervals for the difference in rankings between the groups.
Table 2 provides a listing of the items family members ranked as the top 10 needs. The second research question asked if needs of family members differed if an admission was planned or emergent. A planned admission is one in which the patient and the family had a prearranged date for surgery and knew that an admission to the ICU would follow. An emergent admission is defined as one in which the patient was unexpectedly admitted to the ICU because of a sudden event. The following needs were rated significantly more important to families of patients who experienced a planned admission: to have visiting hours start on time, to have explanations of the environment before entering the ICU for the first time, to have visiting hours changed for special occasions, and to visit any time. The families of patients whose admission was unplanned ranked the following needs as substantially more important: to receive help locating affordable lodging close to the hospital and to have a bathroom within close proximity to the waiting room. Both groups found the following to be equally important: to know that the patient's pain is being addressed, to be called at home about changes in the patient's condition, to know the expected outcome, to have explanations given that are understandable, to receive information about the patient at least once a day, and to know specific facts concerning the patient's progress.
The third research question sought to determine whether needs differed on the basis of perception of the patient's prognosis. Family members who were uncertain of the patient's prognosis found the following to be most important: to talk about their feelings of what has happened, to have a pastor visit, to feel accepted by hospital staff, and to receive assistance in locating affordable lodging near the hospital. The group of family members who indicated that they knew the patient's prognosis did not rank any need as more important than any other. The researchers also asked if the anticipated degree of disability of the patient would affect the family's perceived needs. Family members who anticipated that the patient would return to normal or have a slight decrease in ability to perform normal activities rated the need to have a pastor visit as the most and only significant need. However, those family members who anticipated a prognosis that ranged from a moderate decrease in ability to perform normal activities to unable to perform normal activities rated the following needs as significantly more important: to see the patient frequently, to know why things were done for the patient, and to have the equipment attached to the patient explained. Lastly, the data revealed that 96% of family members rated communication with nurses as excellent or good, significantly higher than the percentage (71%) of family members rating communication with physicians as excellent or good (p < .0001 McNemar's test; see Figure 1). Interestingly, of the family members who rated communication with the physician as excellent or good, the need to speak with the chaplain was significantly higher than in those family members who rated communication with the physicians as fair or poor. A similar comparison was not possible between nurses' communication scored as fair or poor because of the small number in this category.
The results of this study reveal that of the top 10 ranked needs, those associated with the need for information and assurance were the most significant. When comparing the results of this study with other studies of neuroscience patients, the need to have questions answered honestly and to be assured that the best care possible is being given to the patient consistently rank in the top 5 need statements (Engli & Kirsivali-Farmer, 1993; Lam & Beaulieu, 2004; Mathis, 1984; Tin et al., 1999). However, 5 of this study's top 10 ranked needs were not in the top 10 needs identified in Molter's (1979) original study: to be assured that the best care possible is being given to the patient, to know the expected outcome, to know that the patient's pain is being addressed, to know exactly what is being done for the patient, and to know how the patient is being treated medically. This suggests that the needs of families of neuroscience patients are different from those of other critically ill patients. Of these five needs, the need to know that a patient's pain is being addressed is a supplemental item added to the CCFNI by the NICU researchers. Because many neuroscience ICU patients are unable to communicate their needs as a result of their disease process, they cannot inform the medical staff when they are in pain, and so it is understandable that this is a highly ranked need and concern for their family members. Lam and Beaulieu (2004) describe monitoring behavior as one method families use to assure that the best care is being given to the patient. Ensuring that the patient's pain is being addressed may be one way in which families engage in that behavior. It is also logical that the other four needs were identified as different for neuroscience ICU families as they speak to the complexity of the neuroscience patient and the need for those families to understand the patient's diagnosis and the level of disability that may result.
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When the needs of family members of neuroscience patients were compared between those that planned an admission and those for whom the admission was unexpected, understandingly their needs were different. It is reasonable that the need for support in locating affordable lodging is more significant for those family members whose loved one was unexpectedly admitted. This is especially true for this particular institution as it admits patients from a large geographical area, and some families live as far as 3 hours away. Furthermore, they have not had the opportunity to prepare in comparison with families who had a planned admission. Conversely, the needs of family members who were planning an admission have had more opportunity to prepare, so their priorities are somewhat different and lean more toward having an understanding of what to expect during the admission.
An unanticipated finding was that the group of family members who expected their loved one to have a good recovery rated the need to have a pastor visit higher than those family members of patients with a poor prognosis. This could perhaps reflect a desire for the family to spiritually express their relief and gratitude. It may also be an indication of the family's ability to express themselves without the pressure of the unknown worrying them. However, for those family members who anticipated that their loved one would have a greater degree of disability, the needs for proximity and information ranked significantly higher. This is not a surprising finding because one would expect the family to want to be closer to their loved one and require a greater understanding of what to expect. This finding supports Lam and Beaulieu's (2004) assertion that families seek reconnection to their loved one through their physical presence at the bedside and interaction with the patient despite the patient's diminished mental status or unresponsiveness.
It is notable that family members rated communication with nurses as excellent or good significantly more often than they rated communication with physicians as excellent or good. This contrasts slightly with Engli and Kirsivali-Farmer's (1993) finding that most family needs were met by physicians. Our finding may be a reflection of the amount of time nurses in this unit spend with the patients' families and may not be similar in other NICUs. However, our results do concur with the findings of Bond et al. (2003) that families experience frustration when physicians provide inconsistent information. It is interesting that when family members rated communication with the physicians as excellent or good, there was then a significant need to speak to the chaplain. Perhaps this may reflect the effectiveness of the physicians in communicating the prognosis of the patient, which may then lead the family to want spiritual support. It may also reflect that physicians are more likely to communicate when they have bad news to share, leading to the need for chaplaincy support.
In the American Association of Critical Care Nurses "Protocols for Practice: Creating a Healing Environment," Leske and Pasquale (2007) suggest interventions on the basis of the five specific need categories outlined by Leske (1991). Practitioners have the opportunity to develop interventions using the framework of the five need categories and tailor them to the specific needs of families of neuroscience patients considering the results demonstrated in this study. Improved communication with designated family members may be beneficial in determining specific family needs and subsequently how practitioners can focus their time to meet these needs. A support team of other practitioners may also be necessary to help meet family needs.
This study suggests that neuroscience nurses should direct their patient and family education to specifically address information about the patient's particular disease process and care plan as well as pain management. Pamphlets orienting the family to the unit's environment and structure may also be helpful. After implementation of strategies to specifically address family needs in this patient population, studies to test their effect on the family's perceptions of how well their needs were met would be very helpful.
The study sample of 111 family members was limited to neuroscience patients at one institution and may not be generalizable to other patient populations. The sample size may not have been large enough to detect differences in subgroups. Studies with larger sample sizes and in different settings would be helpful to further evaluate our exploratory results.
Family members of neuro-ICU patients have unique needs. Our findings suggest that the importance of these needs varies on the basis of whether the patient's admission was planned or unplanned. Family perception of poor prognosis versus good prognosis changed the importance of the needs as well. In this particular NICU, it was found that the communication between families and nurses was rated much better than that between physicians and families. Factors identified in this study can be used by other practitioners to guide the development of interventions to better meet the needs of the family members of critically ill neuroscience patients.
The authors wish to acknowledge the contributions of the NNICU research team in the development and data collection of this study.
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Questions or comments about this article may be directed to Tanya Lynn Prachar, RN MSN CNRN, at firstname.lastname@example.org. She is a clinician IV, staff nurse at Nerancy Neuro Intensive Care Unit, University of Virginia Medical Center, Charlottesville, VA.
Dea Mahanes, RN MSN CCRN CNRN CCNS, is with the Nerancy Neuro Intensive Care Unit, University of Virginia Medical Center, Charlottesville, VA.
Amy Arceneaux, RN BSN, is with the Nerancy Neuro Intensive Care Unit, University of Virginia Medical Center, Charlottesville, VA.
Bridget L. Moss, RN MSN ACNP CCRN CNRN, is with the Nerancy Neuro Intensive Care Unit, University of Virginia Medical Center, Charlottesville, VA.
Sue Jones, RN BSN, is with the Nerancy Neuro Intensive Care Unit, University of Virginia Medical Center, Charlottesville, VA.
Mark Conaway, PhD, is a professor in the Division of Biostatistics and Epidemiology, Department of Public Health Sciences, University of Virginia School of Medicine, Charlottesville, VA.
Suzanne M. Bums, RN MSN RRT ACNP CCRN FAAN FCCM FAANP, is a professor of nursing, advance practice nurse, MICU, and professional nursing staff organization clinical research program director at the University of Virginia School of Nursing and University of Virginia Health System, Charlottesville, VA.
TABLE 1. Supplemental Questions Added to the Critical Care Family Needs Inventory To have test results explained. To receive written information about the patient's disease. To have the option of being present during bedside procedures. To have the equipment attached to the patient explained. To know that the patient's pain is being addressed. To receive help in locating affordable lodging near the hospital. Are there any needs that you can identify that are not included in this survey? TABLE 2. Top 10 Needs According To Rank Ten Most Important Need Statements From the Current Study 1. To have questions answered honestly 2. To be assured that the best care possible is being given to the patient 3. To know specific facts concerning the patient's progress 4. To know the expected outcome 5. To know that the patient's pain is being addressed 6. To know exactly what is being done for the patient 7. To be called at home about changes in the patient's condition 8. To receive information about the patient at least once a day 9. To know how the patient is being treated medically 10. To feel that the hospital personnel care about the patient Ten Most Important Need Statements From Molter (1979) 1. To feel there is hope 2. To feel that hospital personnel care about the patient 3. To have the waiting room near the patient 4. To be called at home about changes in the patient's condition 5. To know the prognosis 6. To have questions answered honestly 7. To know specific facts concerning the patient's progress 8. To receive information about the patient at least once a day 9. To have explanations given in terms that are understandable 10. To see the patient frequently
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