Original Research
Donna Dowling, PhD, RN ❍ Section Editor
Neonatal Intensive Care Practices Perceptions of Parents, Professionals, and Managers Björn Lantz, PhD; Cornelia Ottosson, MSc, RN ABSTRACT PURPOSE: This article explores the differences and similarities in opinions of neonatal intensive care issues between parents, neonatal intensive care unit (NICU) healthcare professionals (nurses and physicians), and managers (neonatal unit managers and pediatric division managers). METHOD: An exploratory survey (n = 624) was conducted in Sweden during 2012-2013 on the basis of a validated questionnaire composed of 92 neonatal care-related Likert items. A total of 141 parents, 443 professionals, and 40 managers completed the survey. The parents were recruited consecutively from 5 NICUs of the Västra Götaland region in Sweden and the professionals and managers from all 40 NICUs in Sweden. Data were analyzed with analysis of variances, and post hoc analyses were conducted through pairwise t tests with Bonferroni corrections. RESULT: Professionals and managers differed significantly on 1 item. Parents, however, found 54 items significantly less important than professionals did, but found only 4 to be significantly more important than professionals did. CONCLUSIONS: In line with previous research, we found that a gap exists between views of neonatal intensive care practices, with parents on one side and professionals and managers on the other. The nature of this gap, however, differs substantially from previous research, where parents found many items to be more important than professionals did. To develop and improve neonatal intensive care, this gap must be acknowledged and addressed, both in research and in practice. NICU managers need to develop strategies and routines that allow professionals to understand and adjust to the specific priorities of individual parents and families. Key Words: managers, neonatal intensive care unit, parents, parent satisfaction, professionals
C
are issues in the neonatal intensive care unit (NICU) often bring out differing views. Recent research1,2 has shown a noticeable opinion gap between parents on the one side and
Author Affiliations: Sahlgrenska University Hospital, Gothenburg, Sweden (Ms Ottosson), and Department of Technology Management and Economics, Chalmers University of Technology, Gothenburg, Sweden (Dr Lantz). The authors thank all parents, professionals, and managers for their help and participation in this research. The authors declare no funding or conflict of interest. Correspondence: Björn Lantz, PhD, Department of Operations Management, Chalmers University of Technology, Gothenburg 412 96, Sweden (bjorn.lantz@ chalmers.se). Copyright © 2014 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0000000000000083
nurses and physicians on the other. A similar gap exists in pediatric intensive care.3 These opinion gaps can complicate the interaction between the parents and the professionals in the NICU. These gaps must be acknowledged and addressed to develop and improve the neonatal intensive care processes. The interactions between healthcare professionals and parents are not the sole determinants of the processes in the NICU; however, managers play a key role. The fact that management is important in the healthcare system in general is well-documented.4-10 Although NICU processes result from interactions between parents and professionals on an operational level, they are defined by interactions between professionals and management on a strategic level. Hence, differences regarding neonatal care issues between professionals and management, and ultimately between parents and management, are necessary to explore. This article explores the differences and similarities in opinions on neonatal intensive care issues between
Advances in Neonatal Care • Vol. 14, No. 3 • pp. E1-E12
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Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
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parents, NICU healthcare professionals, and managers. Neonatal care issues can be divided into the following 5 different domains: information to parents, treatment and care, organization of work, parental participation, and professional attitude.1 Although all 5 domains have been subjects of previous research, few studies have explicitly compared the views of parents and professionals regarding NICU practices, and the majority of these studies investigated parental views. None of them examined the managers’ views. Although much research has investigated parental views, fewer studies have explored the opinions of professionals, and only a scant number have looked at views of NICU managers. The parental perspective was reviewed a few years ago,11 where 6 primary parental needs were identified as follows: accurate information and inclusion in the infant’s care, vigilant watching-over and protecting of the infant, contact with the infant, being positively perceived by the nursery staff, individualized care, and a therapeutic relationship with the nursing staff. The review also identified the following 4 primary nursing behaviors to assist parents in meeting these needs: emotional support, parent empowerment, a welcoming environment with supportive unit policies, and parent education with an opportunity to practice new skills through guided participation. Hence, in relation to the 5 domains of Latour et al,1 the emphasis of the parental needs lies on information to parents, treatment and care, and parental participation, whereas the nursing behaviors are more oriented toward organization of work and professional attitude. Research has assessed the differences between the needs of fathers and mothers in the NICU,12 examined the degree of obstruction parents perceive from the different types of NICU medical technology,13 explored parents’ and professionals’ opinions about parental performance of care in the NICU,2 identified the central parental coping strategies, and documented the ways in which staff could support them.14 Nevertheless, a recent review of the field15 concluded that gaps remain in our understanding of parental satisfaction with NICU care practices, and it requires more research. Different types of attitudes and practices among NICU professionals have also been the subject of research. Studies have investigated neonatal nurses’ perceptions of knowledge and practice in pain assessment and management,16 and their perception of feeding temperature practices.17 Research has also suggested that information based on estimates made by healthcare professionals may often be misleading.18 The managerial views of NICU practices have received scant attention. Medical directors of all the obstetric and the pediatric units in Norway were surveyed regarding explicit written guidelines for withholding and withdrawing treatment for extremely
premature infants19; a survey of NICU managers in the United Kingdom, conducted to assess how their units addressed parent communication, support, and information needs during neonatal care and the early months after discharge20; and a survey of NICU managers in the United Kingdom regarding unit organization and policy.21 A recent review article22 identified parents’ needs and ways in which professionals may offer meaningful support in a family-centered care context. Studies have found that the attitudes among professionals toward saving extremely low birth-weight children differed from those of parents,23 and that nurses integrated ethics of justice and ethics of care, whereas mothers were solely concerned about the health and well-being of their infant.24 Another recent review25 concluded that the effectiveness of family-centered care can often depend on individual demographic characteristics of the child, parent, and healthcare professional, and that there exists a broad spectrum of perceptions among healthcare professionals and parents regarding parental needs and family-centered care. In summary, modern family-centered care in the NICU requires knowledge about perceptions of neonatal intensive care practices, not only of the parents, but also of healthcare professionals and NICU managers. The parental view is relatively well documented,11-15,22-25 followed by that of the professionals,16-18,22-25 and then that of the managers.19-21 To provide and develop efficient neonatal care, differences between the views of parents, professionals, and managers need to be addressed. Thus, our objective was to explore differences and similarities in opinions on neonatal intensive care issues between parents, NICU healthcare professionals, and NICU managers. Although our study was limited to a Swedish context, results were compared with—and found to be quite different from—previous research on the basis of the same questionnaire.1
METHODS For natural reasons, parents, professionals, and managers were approached in quite different ways regarding their participation in this study. We asked all parents of children admitted for more than 48 hours to any of the 5 NICUs of the Västra Götaland region in Sweden during the spring of 2013 to participate in the study at the time of discharge. Parents whose children passed away during their NICU stay were excluded from the survey. We provided the parents with verbal and detailed written information about the study and informed them that declining would not affect their future interactions with the healthcare system in any way. Parents who agreed to participate received questionnaires and return envelopes. To ensure the anonymity of all www.advancesinneonatalcare.org
Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
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Neonatal Intensive Care Practices
participants, only the contact persons in the NICUs could connect the respondents’ identities to respondent numbers, and only the second author could connect respondent numbers to specific answers. After a round of reminders was sent to parents who had earlier agreed to participate but had not yet delivered their questionnaires within 3 weeks, a total of 141 of the 173 prompted parents (80.5%) participated in the study. The professionals were approached through an indirect method because there is no central index covering all NICU professionals in Sweden. We contacted all unit managers (typically neonatal care unit managers) and all division managers (typically pediatric division managers) at the 40 NICUs in Sweden through e-mail and asked them to forward individualized links to the anonymized Web-based questionnaire. About 58% of managers accepted to do so, whereas 25% of the managers did not want their professionals to participate in the study typically because of their high current workload, and 17% of the managers did not respond to our request at all, despite several reminders by phone and e-mail. Therefore, it is not possible to perform a direct assessment of nonresponse. On the basis of phone conversations with individual managers, we believe that approximately 60% to 65% of the professionals who actually received the questionnaire chose to participate. In addition, because the managers who forwarded the questionnaire represent a realistic mix of small, medium-sized, and large NICU units, and the relative mixture of physicians and nurses in our sample is the same as in previous research,1 we can assume that our sample of professionals was representative. We approached the unit and division managers directly by phone regarding participation in the study. Managers who accepted to participate, or were unreachable by phone, received e-mails, which contained individualized links to the anonymized Web-based questionnaire. At the time of contact, there were 69 managers in Sweden (40 neonatal unit managers and 29 pediatric division managers, with some divisions including several units). After multiple rounds of e-mails and phone calls, 58% of the managers accepted to participate, 25% declined, and 17% were unreachable. The questionnaire that we used is a Swedish version of the Empowerment of Parents in the Intensive Care–Neonatology (EMPATHIC-N) questionnaire, which was developed and validated in earlier research.1 In addition to demographic questions (eg, sex and age), it consists of 92 items on general neonatal care issues assessed on a 6-point Likert-type scale ranging from “completely unimportant” to “extremely important.” The items were not culturespecific. A professional translator converted the questionnaire into Swedish. The authors modified
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the translated version for specific terminology used in Swedish NICUs, which was verified by the professional translator. For reliability reasons, we also randomized the order of the 92 items. Reliability measures, the Cronbach α, of the domains ranged from 0.87 to 0.93, that is, within the same interval as the original version of the questionnaire. Hence, we regard the questionnaire a reliable tool in this article. However, one should note that the EMPATHIC-N questionnaire has some shortcomings. First, the questionnaire was developed in a Dutch context, which means that some items may be of less relevance in Sweden. For example, rooming-in seems to be much more common in Sweden than in the Netherlands. According to our interviews, the vast majority of babies admitted to a NICU in Sweden are roomed in, whereas only a small proportion of Dutch babies are. Therefore, items related to, for example, special rooms in the NICU for mothers to express milk, or cameras in incubators to provide online contact between parents and infant, are less relevant in Sweden. However, our main argument for using an unmodified version of the questionnaire, nonetheless, is that we, as far as possible, want to preserve the advantage of direct comparison with other studies that use the same questionnaire. Second, research during the past few years has identified important areas in the field of neonatal care not covered more than superficially in the questionnaire, for example, kangaroo mother care26,27 and parental presence in the NICU.28,29 We plan to extend and revalidate the questionnaire with respect to the latest research in the field for use in a future study in a Swedish context. The regional research ethics committee approved this study. In total, 624 participants participated, with 141 parents, 443 professionals, and 40 managers. The study, therefore, had sufficient power, with the required sample size for the omnibus 1-way analysis of variance (ANOVA) with 3 groups being 252 respondents for a medium effect size, an alpha value (probability of type 1 error) of .05, and a beta value (probability of type 2 error) of .05. Data were analyzed through ANOVAs, and post hoc analyzes were conducted with pairwise t tests with Bonferroni corrections (using SPSS, version 21, Chicago, Illinois). Regarding ANOVAs, an effect size measure of 0.01 corresponds with a small effect, 0.059 with a medium effect, and 0.138 with a large effect.30
RESULTS Tables 1 to 3 present the characteristics of the responding parents, professionals, and managers. Table 4 shows the results for the domain of information. For each item, means and standard deviations for parents, professionals, and managers are
Advances in Neonatal Care • Vol. 14, No. 3 Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
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TABLE 1. Characteristics of the Participating Parents
TABLE 3. Characteristics of the Participating Managers
Sex (male/female)
81/58
Age, y (mean/SD)
32.17/6.13
Ethnicity (Swedish/non-Swedish)
128/11
Number of days at the neonatal intensive care unit (mean[SD])
27.40[28.01]
First child (yes/no)
99/41
Sex (male/ female) Age (mean/SD) Profession
displayed, along with an effect size measure, the P value from the ANOVA, and the results of the post hoc analysis in the cases, where the ANOVA was found to be significant. For the ease of comparison, the items are presented in the same order as in previous research1 (ie, items were sorted on the basis of the importance in terms of item mean values for parents). There were no distinct differences between parents, professionals, and managers regarding the information items that were rated as most important by parents (ie, items 1-9 in Table 4). On the contrary, for information items of lesser importance to parents (ie, items 11-20 in Table 4), parents generally assigned significantly less importance than both professionals and managers did, whereas there were no significant differences between the ratings of professionals and managers. We found, however, that there were 2 exceptions to this trend. First, parents rated the item concerning information provision on the (adverse) effects of medication (ie, item 10 in Table 4) as significantly more important than professionals did (P < .001). Interestingly but not surprisingly, previous research1 found this item to be the information item wherein the difference between parents and professionals was largest. Second, the item concerning the provision of information in a manner
TABLE 2. Characteristics of the Participating Professionals Physicians (n = 71) Sex (male/female)
30/41
Nurses (n = 372) 4/368
Age, y (mean/SD)
46.73/9.95
45.65/11.23
Experience in neonatal intense unit in y (mean/SD)
8.55/8.19
13.87/10.96
Experience overall profession in y (mean/SD)
18.05/9.67
21.17/11.77
Working hr per wk (mean/SD)
22.25/16.00
32.19/7.43
Unit Managers (n = 21)
Division Managers (n = 19)
21/0
11/8
50.62/8.16
54.63/6.66
18 nurses
6 nurses
3 operations managers
12 physicians 1 other
understandable to the parents (ie, item 12 in Table 4) was the 4th most important information item as per parents’ ratings in our study (but only 12th most important in earlier research1). Nevertheless, parents still rated this item as significantly less important than both professionals and managers (P = .012). Table 5 shows the results for the domain of treatment and care. Much like with the domain of information, a number of treatment and care items were rated as significantly less important by parents than by professionals and managers (ie, items 25, 34, and 37-42 in Table 5). In contrast, there were also a number of items that parents rated as significantly less important than professionals, albeit not significantly different to the ratings of managers (ie, items 23-24, 29, 35, 36, and 43 in Table 5). Furthermore, the items with significantly different ratings were found among the most important (to parents) and the less important (to parents) items. Finally, the item related to advising parents in acute situations (ie, item 27 in Table 5) was rated as significantly more important by parents than by professionals (P = .019). Previous research1 found this item to be the treatment and care item, where the difference between parents and professionals was second largest. Table 6 shows the results for the domain of organization. Similarly to the domain of treatment and care, some organization items were rated as significantly less important by parents than by professionals and managers (ie, items 49, 53-56, 58, 60, and 63 in Table 6), and some were rated as significantly less important by parents than by professionals albeit not significantly different to the ratings of managers (ie, items 47, 50, 57, and 62 in Table 6). The items with significantly different ratings were also found among the most important (to parents) and the less important (to parents) items. Two organization items were rated as more important by parents than by professionals (ie, items 48 and 59 in Table 6); these items concerned a camera in the incubator (P = .038), and bed capacity not influencing the moment of discharge (P < .001). The latter was also rated as significantly more important by parents www.advancesinneonatalcare.org
Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
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5.80
Parents are informed about the child’s illness
Parents are informed about changes in the child’s condition as soon as possible
Caregivers inform parents daily about the child’s care and treatment
Caregivers provide honest information to parents
Parents are informed about tests and procedures
Caregivers answer parents’ questions adequately
Caregivers inform the parents about the treatment consequences
Parents are informed about the child’s future perspectives
Caregivers give no conflicting information to the parents
Parents are informed about the (adverse) effects of the medication
Parents have easy access to information
Caregivers inform the parents in a way that is understandable for them
Parents are informed about neonatal intensive care unit rules
Caregivers inform the parents about breastfeeding
Caregivers provide not only oral but also written information
Caregivers inform the parents on the best moment for the parents
Caregivers’ communication with non-Swedish-speaking parents is through 4.61 an interpreter or the interpreter-telephone
The way to the neonatal intensive care unit is clearly signposted
Parents are informed of visiting hours for other family members
Parents are informed about sanitary units
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
3.62
4.38
4.30
3.98
4.27
5.01
5.08
5.70
5.23
5.49
5.47
5.32
5.57
5.60
5.58
5.82
5.65
5.76
Mean
1.44
1.33
1.27
1.43
1.37
1.25
1.03
1.19
0.62
0.85
0.97
0.83
1.21
0.81
0.63
0.70
0.49
0.74
0.58
0.66
SD
Parents
Item
TABLE 4. Results: Domain Information
4.77
5.03
4.84
5.69
4.82
4.89
5.62
5.46
5.84
5.53
5.14
5.53
5.20
5.57
5.67
5.53
5.77
5.75
5.81
5.87
Mean
0.98
0.91
0.94
0.67
0.88
0.96
0.68
0.76
0.56
0.74
0.94
0.81
1.02
0.73
0.67
0.76
0.60
0.62
0.58
0.52
SD
Professionals
4.91
5.22
4.91
5.84
4.81
5.03
5.72
5.52
5.88
5.59
5.31
5.69
5.34
5.57
5.78
5.63
5.88
5.78
5.91
5.84
Mean
2
.248
.604
.378
.271
.330
.417
P
0.062
1.03
0.163
0.93 0.071
0.90 0.047
0.42 0.206
0.94 0.107
1.00
0.53 0.102
0.68 0.033
0.38 0.012
0.59 0.027
0.80 0.022
0.62 0.004
0.80 0.003
1>2
Post hoc
1 < 2, 1 < 3
Donna Dowling, PhD, RN ❍ Section Editor
Neonatal Intensive Care Practices Perceptions of Parents, Professionals, and Managers Björn Lantz, PhD; Cornelia Ottosson, MSc, RN ABSTRACT PURPOSE: This article explores the differences and similarities in opinions of neonatal intensive care issues between parents, neonatal intensive care unit (NICU) healthcare professionals (nurses and physicians), and managers (neonatal unit managers and pediatric division managers). METHOD: An exploratory survey (n = 624) was conducted in Sweden during 2012-2013 on the basis of a validated questionnaire composed of 92 neonatal care-related Likert items. A total of 141 parents, 443 professionals, and 40 managers completed the survey. The parents were recruited consecutively from 5 NICUs of the Västra Götaland region in Sweden and the professionals and managers from all 40 NICUs in Sweden. Data were analyzed with analysis of variances, and post hoc analyses were conducted through pairwise t tests with Bonferroni corrections. RESULT: Professionals and managers differed significantly on 1 item. Parents, however, found 54 items significantly less important than professionals did, but found only 4 to be significantly more important than professionals did. CONCLUSIONS: In line with previous research, we found that a gap exists between views of neonatal intensive care practices, with parents on one side and professionals and managers on the other. The nature of this gap, however, differs substantially from previous research, where parents found many items to be more important than professionals did. To develop and improve neonatal intensive care, this gap must be acknowledged and addressed, both in research and in practice. NICU managers need to develop strategies and routines that allow professionals to understand and adjust to the specific priorities of individual parents and families. Key Words: managers, neonatal intensive care unit, parents, parent satisfaction, professionals
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are issues in the neonatal intensive care unit (NICU) often bring out differing views. Recent research1,2 has shown a noticeable opinion gap between parents on the one side and
Author Affiliations: Sahlgrenska University Hospital, Gothenburg, Sweden (Ms Ottosson), and Department of Technology Management and Economics, Chalmers University of Technology, Gothenburg, Sweden (Dr Lantz). The authors thank all parents, professionals, and managers for their help and participation in this research. The authors declare no funding or conflict of interest. Correspondence: Björn Lantz, PhD, Department of Operations Management, Chalmers University of Technology, Gothenburg 412 96, Sweden (bjorn.lantz@ chalmers.se). Copyright © 2014 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0000000000000083
nurses and physicians on the other. A similar gap exists in pediatric intensive care.3 These opinion gaps can complicate the interaction between the parents and the professionals in the NICU. These gaps must be acknowledged and addressed to develop and improve the neonatal intensive care processes. The interactions between healthcare professionals and parents are not the sole determinants of the processes in the NICU; however, managers play a key role. The fact that management is important in the healthcare system in general is well-documented.4-10 Although NICU processes result from interactions between parents and professionals on an operational level, they are defined by interactions between professionals and management on a strategic level. Hence, differences regarding neonatal care issues between professionals and management, and ultimately between parents and management, are necessary to explore. This article explores the differences and similarities in opinions on neonatal intensive care issues between
Advances in Neonatal Care • Vol. 14, No. 3 • pp. E1-E12
E1
Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
ANC-D-13-00135.indd E1
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Lantz and Ottosson
parents, NICU healthcare professionals, and managers. Neonatal care issues can be divided into the following 5 different domains: information to parents, treatment and care, organization of work, parental participation, and professional attitude.1 Although all 5 domains have been subjects of previous research, few studies have explicitly compared the views of parents and professionals regarding NICU practices, and the majority of these studies investigated parental views. None of them examined the managers’ views. Although much research has investigated parental views, fewer studies have explored the opinions of professionals, and only a scant number have looked at views of NICU managers. The parental perspective was reviewed a few years ago,11 where 6 primary parental needs were identified as follows: accurate information and inclusion in the infant’s care, vigilant watching-over and protecting of the infant, contact with the infant, being positively perceived by the nursery staff, individualized care, and a therapeutic relationship with the nursing staff. The review also identified the following 4 primary nursing behaviors to assist parents in meeting these needs: emotional support, parent empowerment, a welcoming environment with supportive unit policies, and parent education with an opportunity to practice new skills through guided participation. Hence, in relation to the 5 domains of Latour et al,1 the emphasis of the parental needs lies on information to parents, treatment and care, and parental participation, whereas the nursing behaviors are more oriented toward organization of work and professional attitude. Research has assessed the differences between the needs of fathers and mothers in the NICU,12 examined the degree of obstruction parents perceive from the different types of NICU medical technology,13 explored parents’ and professionals’ opinions about parental performance of care in the NICU,2 identified the central parental coping strategies, and documented the ways in which staff could support them.14 Nevertheless, a recent review of the field15 concluded that gaps remain in our understanding of parental satisfaction with NICU care practices, and it requires more research. Different types of attitudes and practices among NICU professionals have also been the subject of research. Studies have investigated neonatal nurses’ perceptions of knowledge and practice in pain assessment and management,16 and their perception of feeding temperature practices.17 Research has also suggested that information based on estimates made by healthcare professionals may often be misleading.18 The managerial views of NICU practices have received scant attention. Medical directors of all the obstetric and the pediatric units in Norway were surveyed regarding explicit written guidelines for withholding and withdrawing treatment for extremely
premature infants19; a survey of NICU managers in the United Kingdom, conducted to assess how their units addressed parent communication, support, and information needs during neonatal care and the early months after discharge20; and a survey of NICU managers in the United Kingdom regarding unit organization and policy.21 A recent review article22 identified parents’ needs and ways in which professionals may offer meaningful support in a family-centered care context. Studies have found that the attitudes among professionals toward saving extremely low birth-weight children differed from those of parents,23 and that nurses integrated ethics of justice and ethics of care, whereas mothers were solely concerned about the health and well-being of their infant.24 Another recent review25 concluded that the effectiveness of family-centered care can often depend on individual demographic characteristics of the child, parent, and healthcare professional, and that there exists a broad spectrum of perceptions among healthcare professionals and parents regarding parental needs and family-centered care. In summary, modern family-centered care in the NICU requires knowledge about perceptions of neonatal intensive care practices, not only of the parents, but also of healthcare professionals and NICU managers. The parental view is relatively well documented,11-15,22-25 followed by that of the professionals,16-18,22-25 and then that of the managers.19-21 To provide and develop efficient neonatal care, differences between the views of parents, professionals, and managers need to be addressed. Thus, our objective was to explore differences and similarities in opinions on neonatal intensive care issues between parents, NICU healthcare professionals, and NICU managers. Although our study was limited to a Swedish context, results were compared with—and found to be quite different from—previous research on the basis of the same questionnaire.1
METHODS For natural reasons, parents, professionals, and managers were approached in quite different ways regarding their participation in this study. We asked all parents of children admitted for more than 48 hours to any of the 5 NICUs of the Västra Götaland region in Sweden during the spring of 2013 to participate in the study at the time of discharge. Parents whose children passed away during their NICU stay were excluded from the survey. We provided the parents with verbal and detailed written information about the study and informed them that declining would not affect their future interactions with the healthcare system in any way. Parents who agreed to participate received questionnaires and return envelopes. To ensure the anonymity of all www.advancesinneonatalcare.org
Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
ANC-D-13-00135.indd E2
15/05/14 1:50 AM
Neonatal Intensive Care Practices
participants, only the contact persons in the NICUs could connect the respondents’ identities to respondent numbers, and only the second author could connect respondent numbers to specific answers. After a round of reminders was sent to parents who had earlier agreed to participate but had not yet delivered their questionnaires within 3 weeks, a total of 141 of the 173 prompted parents (80.5%) participated in the study. The professionals were approached through an indirect method because there is no central index covering all NICU professionals in Sweden. We contacted all unit managers (typically neonatal care unit managers) and all division managers (typically pediatric division managers) at the 40 NICUs in Sweden through e-mail and asked them to forward individualized links to the anonymized Web-based questionnaire. About 58% of managers accepted to do so, whereas 25% of the managers did not want their professionals to participate in the study typically because of their high current workload, and 17% of the managers did not respond to our request at all, despite several reminders by phone and e-mail. Therefore, it is not possible to perform a direct assessment of nonresponse. On the basis of phone conversations with individual managers, we believe that approximately 60% to 65% of the professionals who actually received the questionnaire chose to participate. In addition, because the managers who forwarded the questionnaire represent a realistic mix of small, medium-sized, and large NICU units, and the relative mixture of physicians and nurses in our sample is the same as in previous research,1 we can assume that our sample of professionals was representative. We approached the unit and division managers directly by phone regarding participation in the study. Managers who accepted to participate, or were unreachable by phone, received e-mails, which contained individualized links to the anonymized Web-based questionnaire. At the time of contact, there were 69 managers in Sweden (40 neonatal unit managers and 29 pediatric division managers, with some divisions including several units). After multiple rounds of e-mails and phone calls, 58% of the managers accepted to participate, 25% declined, and 17% were unreachable. The questionnaire that we used is a Swedish version of the Empowerment of Parents in the Intensive Care–Neonatology (EMPATHIC-N) questionnaire, which was developed and validated in earlier research.1 In addition to demographic questions (eg, sex and age), it consists of 92 items on general neonatal care issues assessed on a 6-point Likert-type scale ranging from “completely unimportant” to “extremely important.” The items were not culturespecific. A professional translator converted the questionnaire into Swedish. The authors modified
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the translated version for specific terminology used in Swedish NICUs, which was verified by the professional translator. For reliability reasons, we also randomized the order of the 92 items. Reliability measures, the Cronbach α, of the domains ranged from 0.87 to 0.93, that is, within the same interval as the original version of the questionnaire. Hence, we regard the questionnaire a reliable tool in this article. However, one should note that the EMPATHIC-N questionnaire has some shortcomings. First, the questionnaire was developed in a Dutch context, which means that some items may be of less relevance in Sweden. For example, rooming-in seems to be much more common in Sweden than in the Netherlands. According to our interviews, the vast majority of babies admitted to a NICU in Sweden are roomed in, whereas only a small proportion of Dutch babies are. Therefore, items related to, for example, special rooms in the NICU for mothers to express milk, or cameras in incubators to provide online contact between parents and infant, are less relevant in Sweden. However, our main argument for using an unmodified version of the questionnaire, nonetheless, is that we, as far as possible, want to preserve the advantage of direct comparison with other studies that use the same questionnaire. Second, research during the past few years has identified important areas in the field of neonatal care not covered more than superficially in the questionnaire, for example, kangaroo mother care26,27 and parental presence in the NICU.28,29 We plan to extend and revalidate the questionnaire with respect to the latest research in the field for use in a future study in a Swedish context. The regional research ethics committee approved this study. In total, 624 participants participated, with 141 parents, 443 professionals, and 40 managers. The study, therefore, had sufficient power, with the required sample size for the omnibus 1-way analysis of variance (ANOVA) with 3 groups being 252 respondents for a medium effect size, an alpha value (probability of type 1 error) of .05, and a beta value (probability of type 2 error) of .05. Data were analyzed through ANOVAs, and post hoc analyzes were conducted with pairwise t tests with Bonferroni corrections (using SPSS, version 21, Chicago, Illinois). Regarding ANOVAs, an effect size measure of 0.01 corresponds with a small effect, 0.059 with a medium effect, and 0.138 with a large effect.30
RESULTS Tables 1 to 3 present the characteristics of the responding parents, professionals, and managers. Table 4 shows the results for the domain of information. For each item, means and standard deviations for parents, professionals, and managers are
Advances in Neonatal Care • Vol. 14, No. 3 Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
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TABLE 1. Characteristics of the Participating Parents
TABLE 3. Characteristics of the Participating Managers
Sex (male/female)
81/58
Age, y (mean/SD)
32.17/6.13
Ethnicity (Swedish/non-Swedish)
128/11
Number of days at the neonatal intensive care unit (mean[SD])
27.40[28.01]
First child (yes/no)
99/41
Sex (male/ female) Age (mean/SD) Profession
displayed, along with an effect size measure, the P value from the ANOVA, and the results of the post hoc analysis in the cases, where the ANOVA was found to be significant. For the ease of comparison, the items are presented in the same order as in previous research1 (ie, items were sorted on the basis of the importance in terms of item mean values for parents). There were no distinct differences between parents, professionals, and managers regarding the information items that were rated as most important by parents (ie, items 1-9 in Table 4). On the contrary, for information items of lesser importance to parents (ie, items 11-20 in Table 4), parents generally assigned significantly less importance than both professionals and managers did, whereas there were no significant differences between the ratings of professionals and managers. We found, however, that there were 2 exceptions to this trend. First, parents rated the item concerning information provision on the (adverse) effects of medication (ie, item 10 in Table 4) as significantly more important than professionals did (P < .001). Interestingly but not surprisingly, previous research1 found this item to be the information item wherein the difference between parents and professionals was largest. Second, the item concerning the provision of information in a manner
TABLE 2. Characteristics of the Participating Professionals Physicians (n = 71) Sex (male/female)
30/41
Nurses (n = 372) 4/368
Age, y (mean/SD)
46.73/9.95
45.65/11.23
Experience in neonatal intense unit in y (mean/SD)
8.55/8.19
13.87/10.96
Experience overall profession in y (mean/SD)
18.05/9.67
21.17/11.77
Working hr per wk (mean/SD)
22.25/16.00
32.19/7.43
Unit Managers (n = 21)
Division Managers (n = 19)
21/0
11/8
50.62/8.16
54.63/6.66
18 nurses
6 nurses
3 operations managers
12 physicians 1 other
understandable to the parents (ie, item 12 in Table 4) was the 4th most important information item as per parents’ ratings in our study (but only 12th most important in earlier research1). Nevertheless, parents still rated this item as significantly less important than both professionals and managers (P = .012). Table 5 shows the results for the domain of treatment and care. Much like with the domain of information, a number of treatment and care items were rated as significantly less important by parents than by professionals and managers (ie, items 25, 34, and 37-42 in Table 5). In contrast, there were also a number of items that parents rated as significantly less important than professionals, albeit not significantly different to the ratings of managers (ie, items 23-24, 29, 35, 36, and 43 in Table 5). Furthermore, the items with significantly different ratings were found among the most important (to parents) and the less important (to parents) items. Finally, the item related to advising parents in acute situations (ie, item 27 in Table 5) was rated as significantly more important by parents than by professionals (P = .019). Previous research1 found this item to be the treatment and care item, where the difference between parents and professionals was second largest. Table 6 shows the results for the domain of organization. Similarly to the domain of treatment and care, some organization items were rated as significantly less important by parents than by professionals and managers (ie, items 49, 53-56, 58, 60, and 63 in Table 6), and some were rated as significantly less important by parents than by professionals albeit not significantly different to the ratings of managers (ie, items 47, 50, 57, and 62 in Table 6). The items with significantly different ratings were also found among the most important (to parents) and the less important (to parents) items. Two organization items were rated as more important by parents than by professionals (ie, items 48 and 59 in Table 6); these items concerned a camera in the incubator (P = .038), and bed capacity not influencing the moment of discharge (P < .001). The latter was also rated as significantly more important by parents www.advancesinneonatalcare.org
Copyright © 2014 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
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5.80
Parents are informed about the child’s illness
Parents are informed about changes in the child’s condition as soon as possible
Caregivers inform parents daily about the child’s care and treatment
Caregivers provide honest information to parents
Parents are informed about tests and procedures
Caregivers answer parents’ questions adequately
Caregivers inform the parents about the treatment consequences
Parents are informed about the child’s future perspectives
Caregivers give no conflicting information to the parents
Parents are informed about the (adverse) effects of the medication
Parents have easy access to information
Caregivers inform the parents in a way that is understandable for them
Parents are informed about neonatal intensive care unit rules
Caregivers inform the parents about breastfeeding
Caregivers provide not only oral but also written information
Caregivers inform the parents on the best moment for the parents
Caregivers’ communication with non-Swedish-speaking parents is through 4.61 an interpreter or the interpreter-telephone
The way to the neonatal intensive care unit is clearly signposted
Parents are informed of visiting hours for other family members
Parents are informed about sanitary units
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
3.62
4.38
4.30
3.98
4.27
5.01
5.08
5.70
5.23
5.49
5.47
5.32
5.57
5.60
5.58
5.82
5.65
5.76
Mean
1.44
1.33
1.27
1.43
1.37
1.25
1.03
1.19
0.62
0.85
0.97
0.83
1.21
0.81
0.63
0.70
0.49
0.74
0.58
0.66
SD
Parents
Item
TABLE 4. Results: Domain Information
4.77
5.03
4.84
5.69
4.82
4.89
5.62
5.46
5.84
5.53
5.14
5.53
5.20
5.57
5.67
5.53
5.77
5.75
5.81
5.87
Mean
0.98
0.91
0.94
0.67
0.88
0.96
0.68
0.76
0.56
0.74
0.94
0.81
1.02
0.73
0.67
0.76
0.60
0.62
0.58
0.52
SD
Professionals
4.91
5.22
4.91
5.84
4.81
5.03
5.72
5.52
5.88
5.59
5.31
5.69
5.34
5.57
5.78
5.63
5.88
5.78
5.91
5.84
Mean
2
.248
.604
.378
.271
.330
.417
P
0.062
1.03
0.163
0.93 0.071
0.90 0.047
0.42 0.206
0.94 0.107
1.00
0.53 0.102
0.68 0.033
0.38 0.012
0.59 0.027
0.80 0.022
0.62 0.004
0.80 0.003
1>2
Post hoc
1 < 2, 1 < 3
