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Abstract |
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 Top Abstract MethodsResultsDiscussion and ConclusionsReferences |
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• Objective To describe neonatal nurses’ perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants.
• Methods A cross-sectional, descriptive, correlational mailed survey design was used. The 55-item Bereavement End-of-Life Attitudes About Care: Neonatal Nurses Scale containing 4 sections (comfort, roles, involvement, and demographics) was mailed to 240 hospitals in the United States.
• Results The final response rate was 52% (190 completed data sets from 125 hospitals). Respondents were comfortable with many aspects of bereavement/end-of-life care. Comfort and roles scores correlated significantly with number of years as a neonatal intensive care nurse. Respondents agreed about many important aspects of their roles with patients’ families, especially the importance of providing daily support to the families. Most respondents identified caring for a dying infant, the actual death of an infant, and language or cultural differences as influential factors in the level of their involvement with families.
• Conclusions Education on bereavement/end-of-life care could affect nurses’ comfort with caring for families of critically ill and/or dying infants. Additional education on cultural competence would be helpful. Educators must promote the inclusion of content on bereavement/end-of-life care in nursing curricula. Finally, researchers must focus more attention on factors that promote and inhibit bereavement/end-of-life care of families of critically ill and/or dying infants.
| Nurses’ support may have a crucial effect on a family’s response to their infant’s death.
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The involvement of neonatal nurses in caring for critically ill and/or dying infants and the infants’ parents has been explored at least since 1978 when Jacobson7 reported that sudden death or relapse of an infant and coping with parental grief in particular were significant stressors. As one nurse recounted,7 "The father sobbed loudly over the isolette. The unit became quiet and tense. Most nurses were close to tears and other parents with progressing babies were subdued, too. It was a very long night." Another prominent stressor was conflict about life and death:
On a very short-staffed night I admitted an 800 gm preemie with no vital signs. His private doctor had waited eight hours to see if the baby would "live" before transferring him to us. After 20 minutes of heroics by the resident, a heart beat began. I cared for the baby for four hours but my heart was not in it. To me he was dead and I was mutilating a baby’s corpse. Also, the time I spent on the dead baby could have been given to my other baby who had a corrected cardiac defect and a good prognosis.7
Finally, nurses were often brought to the point of questioning their work and the purpose of the neonatal intensive care unit (NICU):
A child was kept alive mechanically for weeks because the parents could not accept his dying. I started avoiding him and then felt guilty for it. I started questioning much of our unit’s work: Is this what we are really here for? Doesn’t quality of life mean something? I had to resuscitate him once, which was particularly stressful—I didn’t want to succeed but I had to look like I was trying hard enough.7
This study7 was one of the first to examine NICU nurses’ responses to patients’ deaths. Its strengths lay in its being a multisite study (7 NICUs in 3 states) with a relatively large sample (N = 87). Unfortunately, Jacobson7 did not describe the instrument used (the Anecdotes About Nursing Stresses) in detail, making an evaluation of its validity and reliability impossible.
In a quantitative study based on Jacobson’s work, Astbury and Yu8 elicited responses from a group of 29 NICU sisters in Australia about the stressfulness of 10 situations previously reported as stressful. Sudden death or relapse of a patient was ranked most intense, along with nurse-doctor conflict and nurse-nurse problems; in terms of frequency, it was ranked sixth. Gribbins and Marshall9 found that patients’ deaths were a significant theme among NICU nurses. In particular, new nurses were concerned about "handling the many problems raised by the death of one of their patients."9 Unfortunately, this study had a small sample size (N=24) and was conducted in a single academic NICU. In addition, although Gribbins and Marshall9 developed and used the Neonatal Nurse Stress-Coping Assessment Inventory in the study, they provided no psychometric data to evaluate the validity and reliability of the inventory.
Downey et al10 reported a study of 59 staff nurses in which the participants described experiencing feelings of helplessness and intense sorrow when caring for dying babies. The respondents also reported physioemotional responses of chronic fatigue, decreased interest in exercise, irritability, and being overly critical. The results of this study10 are limited because the response rate was only 35%, and the sample was extremely homogeneous (white, married females). Similarly, in a recent study in Scotland, Raeside11 found that for many NICU nurses, the period of compassionate care before death was the most stressful period. The most prevalent responses of nurses in this study11 (N = 59, 78% response rate) were sadness, intense sorrow, and helplessness. Most also reported physical signs of irritability, headaches, being overly critical, weariness, overactivity, emotional lability, tearfulness, inability to concentrate, and feeling "low." Raeside pointed out several limitations to the study: a member of the NICU staff carried out the research, the design was self-report and cross-sectional, factors not accounted for in the study could have influenced anxiety (eg, psychological, social, and physical factors), and the sample size was small.
| When caring for dying babies, nurses report feelings of helplessness and sorrow and responses consisting of chronic fatigue, irritability, and being overly critical.
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Finally, in a study done in Hong Kong, Yam et al12 used a qualitative method to explore the experiences of 10 nurses from a single NICU in caring for dying infants. Using content analysis, the researchers identified 8 categories of experience: disbelieving, feeling ambivalent and helpless, protecting emotional self, providing optimal physical care to the infant, providing emotional support to the infant’s family, expressing empathy, lacking knowledge and counseling skills, and experiencing conflicts in care. The researchers11 also identified other factors that contributed to moral distress: subtle cultural upbringing and socialization in nurses’ training and the workplace environment.
In another study done in Hong Kong, Chan et al13 examined nurses’ attitudes toward perinatal bereavement support. In this quantitative study, 110 nurses (88% response rate) from an obstetrics-gynecology unit in a single public hospital responded to items in a structured questionnaire. The sample included nursing students, midwifery students, RNs, midwives, nurse specialists, and nurse educators. The majority reported positive attitudes toward bereavement care. Attitudes were significantly more positive among nurses older than 40 years, more senior nurses, nurses with more than 5 years of experience, and nurses who had had bereavement training. Attitudes positively correlated with needs for training in bereavement care (r = 0.53) and support via hospital policies (r=0.55). This study13 had several limitations: ward managers distributed and collected the questionnaires, the instrument used was not adequately described, the sample came from a single NICU, and the responses of various subgroups were not identified.
Staff nurses use such strategies as providing expert care for sick newborns, providing direct emotional support, interpreting normal feelings, making allowances for individual differences, keeping patients’ family members informed and updated, providing privacy, contacting support persons, preparing the infant’s body for viewing, providing time and a place for infants’ family members to say good-bye, and arranging for follow-up to see how the family members are responding to the loss of the child.14,15 These necessary and valuable strategies are focused on the individual infant and family.
As noted earlier, a major factor in the way staff nurses cope with loss in the NICU is related to their education. Typically, staff nurses receive little education or training to prepare them for dealing with the death of a patient or for assisting patients’ families during and after this time.16 We found no studies on education of APNs in bereavement/end-of-life care.
APNs (both clinical specialists and nurse practitioners), on the other hand, are an exceptional group of nurses both theoretically and expertly adept at providing highly specialized care while meeting hospitals’ needs. The National Association of Neonatal Nurses17 specifies that neonatal APNs’ practice includes 6 core competencies: consultation and collaboration; clinical and professional leadership; change agent; ethical decision making; expert coach and mentor to families and colleagues; and evaluator, user, and performer of research. Thus, the role of a neonatal APN is more broadly based than and complementary to that of a neonatal staff nurse. Because none of the studies cited examined the experience of neonatal APNs, our findings help clarify the similarities and differences between experiences of RNs and APNs in the NICU. Both RNs and APNs can use information from this study to improve the care of critically ill and/or dying infants and the infants’ families during a stressful time.
In summary, researchers have identified nurses’ responses to bereavement/end-of-life care but have not clearly defined what nurses’ perceptions are of that role and what, if any, differences exist between perceptions of RNs and APNs. Therefore, in this study, we addressed 4 research questions:
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Methods |
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Sample
The 1997/1998 American Hospital Association listing18 was used to identify all hospitals in the United States that reported providing neonatal intensive care services; the final sample consisted of 1133 hospitals. The United States was divided into 8 regions approximately equal in population for the selection of a stratified random sample, and then a random sample of 30 hospitals was drawn from each region, resulting in a final sample of 240 hospitals. Each hospital received 2 questionnaires for a total of 480.
Instrument
We developed a 55-item survey, the Bereavement/End-of-Life Attitudes About Care: Neonatal Nurses Scale (BEACONNS), on the basis of a review of the literature on families’ involvement and bereavement, particularly the nursing role in these areas, and on the work of Hickey and Lewandowski19 in a variety of critical care settings. Hickey and Lewandowski developed a survey instrument to examine the perceptions of critical care nurses of the nurses’ comfort with various interventions, the nurses’ role with patients’ families, and factors that influence the nurses’ involvement with patients’ families. The instrument was also used to explore nurses’ beliefs about visitation and involvement in the care of patients by patients’ family members. The authors19 did not report the psychometric properties of the scales they developed.
The original 104-item BEACONNS was revised on the basis of content review by and pilot testing with a convenience sample of 24 experienced NICU nurses, who also evaluated the scale for clarity and redundancy. The final 55-item scale contained 4 sections: comfort with bereavement/end-of-life care (comfort scale), roles with families (roles scale), involvement with families (involvement scale), and demographic characteristics of the NICU and respondent. Reliability was acceptable for all scales for both the pilot study and this study (Table 1
). The roles scale significantly correlated with both the comfort scale (r = 0.60, P < .001) and the involvement scale (r = 0.21, P = .003).
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Roles Scale.
The roles scale was used to assess respondents’ perceptions of their roles with families of critically ill and/or dying infants, for example, explaining equipment to family members and providing support to families on a daily basis. The summated rating scale included options that ranged from strongly disagree (1) to strongly agree (5). Fifteen items in the original scale with item-total correlations less than 0.20 were removed, resulting in a scale with similar satisfactory reliability (Table 1).
Involvement Scale.
The involvement scale was used to gather respondents’ ratings of the importance of various factors relative to the respondents’ involvement with patients’ families, for example, a busy unit or a receptive family. The summated rating scale included options that ranged from very unimportant (1) to very important (5). Four items in the original scale with item-total correlations less than 0.20 were deleted from the scale, resulting in a scale with similar satisfactory reliability (Table 1).
Procedure
The appropriate university institutional review board approved this study before the selection of respondents. Completion of the anonymous survey constituted voluntary informed consent. Research staff mailed packets containing a cover letter, 2 copies of the BEACONNS, and a self-addressed, stamped return envelope to nurse managers in NICUs randomly selected as part of the stratified random sample from all 50 states and the District of Columbia. Staff numerically coded envelopes so they could send second mailings to all nonrespondents after 2 weeks; no identifiers were placed on the instruments themselves. The cover letter stressed that participation was voluntary and that all individual information obtained would remain confidential and anonymous. In an effort to determine actual practice in NICUs, nurse managers were asked to invite the RN and the APN who were most knowledgeable about the care provided to critically ill and/or dying infants and the infants’ families in the NICU to complete the BEACONNS.
Analysis
Descriptive statistics were used to characterize the sample and to examine responses on each of the BEA-CONNS scales. Student t tests were used to explore differences on scales between RNs and APNs. Pearson correlations were used to examine intercorrelations among scales and between all scales and years as a NICU nurse. Partial correlations, with controls for years as a NICU nurse, were used to examine the relationship between scale scores and primary professional roles (RN vs APN). Chi-square analyses were used to explore differences on scale scores between groups (RN vs APN) according to whether the respondent’s basic nursing education program had included bereavement/end-of-life content and, if so, how satisfied the respondent was with it. Student t tests were used to examine differences in scale scores according to whether the NICU had bereavement/end-of-life policies in place. Finally, 1-way analyses of variance (ANOVAs) were used to examine differences in frequency of caring for dying infants, according to NICU level. Post hoc Bonferroni analyses were used to specify the nature of those differences, and set 
at .05. The Bonferroni correction was used when multiple analyses were performed.
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Results |
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TopAbstractMethodsResultsDiscussion and ConclusionsReferences |
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The mean number of years as a nurse was 16.4 (SD = 8.4) for RNs and 20.2 (SD = 6.2) for APNs (t187 = –3.56, P = .000). The mean number of years as a nurse in the NICU was 12.7 (SD=7.4) for RNs and 15.3 (SD=5.9) for APNs (t183 =–2.52, P =.012). Respondents consisted of staff nurses (53%), nurse managers (27%), neonatal nurse practitioners (13%), nurse educators (4%), and clinical nurse specialists (3%).
The mean capacity of NICUs in which the nurses practiced was 23 (SD=13.9) for RNs and 28.3 (SD=16.1) for APNs (t163.5 = –2.34, P = .021). Most NICUs (67%) were level 3. Fifty-three percent of the respondents worked in NICUs that admitted fewer than 500 patients per year.
Comfort With Bereavement/End-of-Life Issues
Overall, respondents were very comfortable with many aspects of bereavement/end-of-life care (mean score = 4.13, SD = 0.66, N = 190; Table 2). RNs and APNs did not differ significantly on the total score on the comfort scale when years of experience as a NICU nurse were controlled for (F1,180 = 3.69, P = .06). However, a significant 1-tailed correlation was detected between comfort and number of years as a NICU nurse (r = 0.30, P = .001, N = 185). Discussing autopsy or organ donation with families of dying infants was the single item on which less than half of the RNs and APNs reported being comfortable or very comfortable. No significant differences existed between RNs and APNs on any item on the comfort scale.
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). RNs and APNs did not differ significantly on the total score on the roles scale when years of experience as a NICU nurse were controlled for (F1,182 = 3.67, P = .06).
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All or nearly all respondents reported that caring for a dying infant or the actual death of an infant was influential or very influential in the level of their involvement with patients’ families (Table 4). Importantly, most indicated that language or cultural differences were influential or very influential in their involvement with patients’ families. Finally, less than two thirds of the RNs identified expectations of peers or nursing leaders as influential or very influential in the RNs’ involvement with families. Less than two thirds of the APNs identified expectations of peers as being influential or very influential (Table 4).
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21 = 13.6, P < .001). A total of 80% (n=99) of all respondents who reported having had some continuing education in bereavement/ end-of-life care had found it helpful or very helpful. A total of 82% (n=155) of all respondents reported that their NICU had a policy, protocol, clinical pathway, or something similar to guide the care of critically ill and/or dying infants and the infants’ families. Independent-samples t tests were used to assess whether respondents from units with bereavement/end-of-life policies in place would be significantly more comfortable caring for critically ill and/or dying infants and the infants’ families, more positive about their roles with these infants and families, and more involved with them. When scores on the comfort scale were used as the dependent variable, the results were significant (t36 = –3.16, P = .003); respondents from units with bereavement/end-of-life policies were more comfortable than those from units without such policies (mean score = 4.2, SD = 0.62 vs mean score = 3.8, SD = 0.72). When scores on the roles scale or on the involvement scale were used as the dependent variable, the results were not significant.
Of the NICUs, 67% were level 3; 30%, level 2; and 3%, level 1. A total of 79% (n=100) of the respondents from level 3 NICUs reported caring for critically ill and/or dying newborns and the infants’ families at least once per week. Of the respondents from level 2 NICUs, 64% reported caring for critically ill and/or dying newborns at least once per week to at least once per year. All of the respondents (100%) from level 1 NICUs reported caring for critically ill and/or dying newborns and the infants’ families from less than once a year to at least once every 6 months. One-way within-subjects ANOVAs with the factor being NICU level and the dependent variables being scores on the comfort, roles, and involvement scales were conducted. The results for the ANOVA for the comfort scale indicated a significant effect of NICU level (F2,183 = 4.33, P = .02). The ANOVAs for scores on the roles and involvement scales indicated no significant effect. Follow-up Bonferroni analyses indicated a significant difference in comfort for respondents from level 2 NICUs (mean score = 3.84, SD = 1.04) and level 3 NICUs (mean score = 4.38, SD = 0.90). These same differences did not apply to the roles or involvement scales.
One-way within-subjects ANOVAs with the factor first being basic educational level and then highest educational level were conducted. For these analyses, scores on the comfort, roles, and involvement scales were used as dependent variables. The analyses revealed no significant differences between means.
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Discussion and Conclusions |
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The time surrounding a newborn’s death can also be extremely tense and stressful for the nurses.7–13 Less than half of the respondents in our study reported feeling comfortable discussing autopsy or organ donation with families of dying infants, possibly because physicians historically have addressed this issue with patients’ families. Thus, difficult topics such as autopsy and organ donation may continue to be ones that engender discomfort even for experienced nurses. This discomfort could at least partially occur because although 63% of the respondents indicated that their basic nursing education program included content on bereavement/ end-of-life care, only 42% were satisfied with the content. Although many of the respondents indicated they had taken continuing education courses on bereavement/end-of-life care, the proportion was significantly greater among APNs than among RNs, possibly reflecting the greater number of years APNs had been in practice.
NICU level affected respondents’ comfort; those from level 3 NICUs were significantly more comfortable with bereavement/end-of-life care and related issues than were respondents from level 1 or level 2 units. In addition, respondents from NICUs with bereavement/end-of-life policies in place were significantly more comfortable caring for critically ill and/or dying infants and the infants’ families than were respondents from NICUs without such policies, underscoring the importance of adequate administrative and educational support for RNs and APNs. This finding might be related to the higher frequency with which nurses in level 3 NICUs care for critically ill and/or dying infants and the infants’ families.
Providing culturally sensitive bereavement/end-of-life care was also an issue of some discomfort for all respondents. Most also indicated that a language or cultural barrier was a significant influence on their level of involvement with patients’ families. The National Association of Neonatal Nurses has published a position statement21 emphasizing the essential nature of cultural competence in the care of critically ill and/or dying infants and the infants’ families. Without such competence, nurses are in danger of negatively labeling families’ behaviors and of considering these behaviors odd or repellant in the context of the dominant culture.3 In addition, nurses may become overwhelmed by the diversity of family coping styles,22 and knowledge of cultural influences on these coping styles could be valuable. The Transcultural Nursing Society (http://www.tcns.org/), founded by Dr Madeleine Leininger, is an excellent resource for nurses interested in enhancing their knowledge about cultural competence in nursing.
| Respondents felt some discomfort in providing culturally sensitive bereavement and end-of-life care.
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Researchers have found that culture and ethnicity have an impact on grief after a perinatal loss,6 so future studies should focus more attention on how nurses can provide more culturally sensitive bereavement/ end-of-life care. For example, researchers might consider addressing, among other topics, approaches that yield the best results in enabling nurses to provide culturally sensitive bereavement/end-of-life care and the effect of the provision of culturally sensitive care on both patients’ families and nurses.
RNs and APNs expressed a high degree of agreement on what appropriate nursing roles are in bereavement/end-of-life care. Nearly all respondents indicated that explaining equipment or the way an infant looks to infants’ families and making sure the families know the nurses’ names are important nursing roles. Almost all respondents agreed that providing support to families of critically ill and/or dying infants on a daily basis is an important role for nurses. This area seems to be one in which giving of self20 is both required and desirable. This giving of self is also an area in which parents can be given a voice in their infant’s care23 and in which nurses can and do have a great impact.
The study had several limitations. First, respondents were RNs and APNs (when available) judged by their nurse managers to be most knowledgeable about bereavement/end-of-life care in the nurses’ NICU. The respondents’ expertise may have made them more comfortable with these aspects of care. Second, parents were not surveyed in this study; therefore, no comparisons between nurses’ and parents’ perceptions can be made. Third, the phrasing of a few items might have been unclear and makes interpretation of some findings difficult. For example, one item on the involvement scale asked whether a language or cultural barrier influenced involvement with families but did not indicate whether the influence was positive or negative. That type of item needs revision before further use. Finally, we found a significant correlation between the roles scale and both the comfort and the involvement scales, indicating overlap of items.
In sum, although education and training can affect neonatal nurses’ comfort with bereavement/end-of-life issues, it is uncertain if their perceptions of roles and involvement with families are likely to be affected. Nonetheless, providing further education and training in bereavement/end-of-life care could increase nurses’ comfort in dealing with difficult topics, such as autopsy and organ donation. Additional education in cultural competence could be useful. This information, however, needs to be readily accessible in both educational programs and in busy NICUs. Perhaps having computer-based or Web-based resources available would be of use in caring for families from different cultures. In clinical settings, the NICU level also should be considered in any educational offerings provided; nurses in level 1 NICUs are less likely than those in level 2 or level 3 NICUs to need to provide bereavement/end-of-life care on a frequent basis.
| Nurses who had more experience and education related to bereavement and end-of-life care were more comfortable providing this care.
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Finally, our results provide some direction for nurse educators: curricula should incorporate more bereavement/end-of-life content at all levels of nursing education. In fact, the American Association of Colleges of Nursing has published recommended competencies (Table 5) and curricular guidelines for end-of-life nursing care.24 Although these guidelines primarily address palliative care for elderly patients, they contain many useful and valuable points in the NICU context. The American Association of Colleges of Nursing document includes concrete suggestions for the placement of various aspects of bereavement/end-of-life care education, including courses in health assessment, pharmacology, psychiatric–mental health nursing, nursing management, ethical/legal issues, cultural issues, nursing research, professional issues, and healthcare settings. In addition, bereavement/end-of-life care can also be included in specialty nursing courses, including neonatal, pediatric, adult, and maternity nursing.
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ACKNOWLEDGMENTS |
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REFERENCES |
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This article has been cited by other articles:
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  C. Williams, J. Cairnie, V. Fines, C. Patey, K. Schwarzer, J. Aylward, L. Lohfeld, H. Kirpalani, and for the With Care team Construction of a Parent-Derived Questionnaire to Measure End-of-Life Care After Withdrawal of Life-Sustaining Treatment in the Neonatal Intensive Care Unit Pediatrics, January 1, 2009; 123(1): e87 - e95. [Abstract] [Full Text] [PDF]
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 B. G. Kruse, L. W. Melhado, L. Convertine, and J. Stecher Evaluating Strategies for Changing Acute Care Nurses' Perceptions on End-of-life Care American Journal of Hospice and Palliative Medicine, October 1, 2008; 25(5): 389 - 397. [Abstract] [PDF]
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