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. 2020 May 6;15(5):e0232190. doi: 10.1371/journal.pone.0232190

Fathers’ needs in a surgical neonatal intensive care unit: Assuring the other parent

Priya Govindaswamy 1,2,*, Sharon M Laing 3, Donna Waters 2,4, Karen Walker 2,4, Kaye Spence 1, Nadia Badawi 1,2
Editor: Jayasree Nair5
PMCID: PMC7202595  PMID: 32374739

Abstract

Objectives

Fathers of infants admitted to Neonatal Intensive Care Unit (NICU) play an important role and have individual needs that are often not recognised. While there is considerable evidence regarding mothers’ needs in the NICU, information about fathers’ is particularly limited. This study identifies the needs of fathers of newborns admitted to NICU for general surgery of major congenital anomalies, and whether health-care professionals meet these needs.

Methods

Forty-eight fathers of infants admitted for surgery between February 2014 and September 2015 were enrolled in a prospective cohort study. Fathers completed the Neonatal Family Needs Inventory comprising 56 items in 5 subscales (Support, Comfort, Information, Proximity, Assurance) at admission and discharge and whether these needs were met; as well as the Social Desirability Scale.

Results

Responses showed Assurance was the most important subscale (M 3.8, SD .26). Having questions answered honestly (M 3.9, SD .20) and knowing staff provide comfort to their infant (M 3.94, SD .24) were fathers’ most important needs. By discharge, fathers expressed a greater importance on being recognised and more involved in their infant’s care. More than 91% indicated their ten most important needs were met by the NICU health-care professionals, with no significant changes at discharge. Clergical visits (M 2.08, SD 1.21) were least important.

Conclusions

Reassurance is a priority for fathers of neonates in a surgical NICU, particularly regarding infant pain management and comfort. It is important that health-care professionals provide reliable, honest information and open-access visiting. Notably, fathers seek greater recognition of their role in the NICU—beyond being the ‘other’ parent.

Introduction

In Australia birth defects affect up to five percent of all infants and remain a leading cause of infant mortality [1,2]. Many birth defects are structural, requiring surgical intervention soon after birth. Outcomes and survival rates in surgical neonatal units have improved [3,4] both due to early intervention, and advancements in surgery and technology [5]. With more infants surviving newborn surgery, health-care professionals are recognising a greater need to focus on families as well as infants to provide better outcomes for the whole family [6].

Studies of parental needs in the Neonatal Intensive Care Unit (NICU) have predominantly focussed on mothers, particularly mothers of preterm infants [6,7]. In samples comprising both parents, mothers typically form the majority. Using the Neonatal Family Needs Inventory (NFNI), Ward [8] compared the needs of 10 fathers with 42 non-related mothers and found fathers ranked support, information and assurance needs significantly less important than mothers. In contrast, Mundy [9] found no significant differences between the needs of 43 mothers and 17 fathers. Although samples in these two studies comprised parents of preterm and term infants, parents of infants requiring neonatal surgery were not independently reported. Only one study has looked at fathers in a surgical NICU [10]; reporting that for 22 fathers stress was predominantly associated with alteration in parental role [10]. To date, there is limited information about fathers’ needs in NICU, particularly fathers of infants requiring neonatal surgery [6] and quantitative studies.

Fathers of infants admitted to a NICU play an important role in supporting mothers and infants. Because mothers may be too unwell to accompany their infant, fathers are frequently the first point-of-contact between family and NICU personnel [11] and often the decision-making parent regarding any urgent treatment required. Fathers’ family and social responsibilities as well as work commitments are widely recognised [11,12], however, the role of fathers in the NICU is less well-defined.

An emerging evidence-base from qualitative studies has revealed several themes in the experiences of fathers of premature infants and fathers’ involvement in NICU. These relate to the need for quality information, maintaining a sense of control, participation in infant care-giving and decision-making, being treated as a unique individual, and the availability of ‘father-specific’ support [13,14].

This study aimed to identify the needs of fathers in a surgical NICU and determine whether their needs were being met by NICU health-care professionals.

Materials and methods

Approval for the study was obtained from the Internal Ethics Review Committee of the Children’s Hospital at Westmead (HREC/13/SCHN/22) prior to recruitment. Written informed consent was obtained from participants.

Study design and setting

This prospective cohort study was conducted in a 23 bed, surgical NICU attached to a quaternary referral and teaching children’s hospital in Sydney, Australia from January 2014 to September 2015. All babies are out-born and require transfer to a surgical NICU. Fathers received an information sheet explaining the study purpose, primary investigator’s contact information, and that choosing not to participate in the study would not affect care of their infant. Participants provided written informed consent. Sample size was based on previous annual admission numbers and the descriptive nature of the study. Data analysed for the current paper formed part of a larger study [15].

Sample

Fathers of newborn infants admitted for surgical treatment of a congenital anomaly and present in the NICU between 48 and 72 hours of admission and literate in English were invited to participate. Fathers not literate in English (n = 4) were excluded because outcome measures were available in English only. A study of parents whose newborns exclusively required cardiac surgery was simultaneously in progress; due to participant burden we did not approach these fathers.

Outcome measures

Fathers’ needs were identified using the Neonatal Family Needs Inventory (NFNI) [8, 16]. This consists of 56 statements designed to measure the importance of needs across five subscales: Support (interpersonal and emotional support); Comfort (personal physical comfort); Information (communicating information about their infant and psychosocial support); Proximity (nearness to infant); and Assurance (feel confident about care given and outcome) (18; 7; 11; 8; 12 items, respectively). Participants rate each item statement as not important (1), slightly important (2), important (3), very important (4), or not applicable (5). This is the only tool available specifically for parents in NICU. It has high face validity and, at tool development, content validity was established using an expert panel and parents [8]. The NFNI showed good internal consistency with this sample (Cronbach alpha of 0.91), similar to that reported by Ward at tool development [8]. For the current study, fathers were also asked to indicate (yes or no) next to each statement whether NICU health-care professionals had met that need.

Fathers also completed the 13-item version of the Social Desirability Scale (SDS), [17] responding True/ False to statements that ‘describe the sort of person you are’. This tool measures the tendency to answer questions in a manner viewed favourably by others. Eight items are reverse-scored; yielding a possible total of 13. High scores may indicate response-bias. In this study the SDS was used to assess social-desirability bias in the needs-met response data.

Procedure

Fathers were given the NFNI and SDS paper-and-pencil questionnaires by the researchers between 48–72 hours of their infant’s NICU admission and asked to return these to the primary researcher (P.G). Fathers provided demographic information. Discharge planning included asking fathers to complete and return a second NFNI before leaving the hospital. Where necessary, fathers were requested by phone to return the questionnaire by post.

Statistical analysis

Likert-scale responses for NFNI need items and needs-met questions were coded; ‘Not-applicable’ was coded to ‘0’. There were no missing values on outcome variables. Descriptive statistics are reported for fathers and infant demographics, item and subscale level analyses. Frequency distributions and means using SPSS [18] were used to determine fathers’ most important and least important needs. Admission and discharge data were compared using paired data from 23 fathers. Effect sizes for subscales at admission were calculated as Cohen’s d using formula for paired data comparisons to avoid over-estimation [19]. Conventionally, a d-value of 0.2 is described as small, 0.5 as medium, 0.8 as large and >1 as very large; however, meaningful interpretation of effect size is context specific [20]. Due to some skewed distributions and small subgroup numbers, parametric and non-parametric techniques were used, with similar results. Parametric results are reported to allow comparison with other literature. SDS scores were summed and mean total SDS scores correlated to total number of needs met and number met of the 10 most important needs, using Pearson’s correlation r and Spearman’s rho.

Approval for the study was obtained from the Internal Ethics Review Committee of the Children’s Hospital at Westmead (HREC/13/SCHN/22) prior to recruitment.

Results

Fifty-nine fathers met the inclusion criteria; 49 agreed to participate (83% participation rate). Forty-eight fathers completed the questionnaires at admission (48/49, 98% response rate); of these 23 completed questionnaires at discharge (23/48, 48%). As shown in Table 1, the sample comprised predominantly well–educated, employed, married fathers; the majority (85%) were less than 40 years of age; and for most this was their first child (28, 60%). No significant relationships were found between father demographics.

Table 1. Sample demographics of fathers and newborn infants (N = 48).

Characteristics Frequency
Father characteristics n (%)
Age group (years)
18–35 30 (62%)
36–40 11 (23%)
> 40 7 (15%)
English as first language
yes 37 (77%)
no 11 (23%)
Birth country
Australia 34 (71%)
South-east Asia 5 (10%)
Other countries 9 (19%)
Marital status
married 35 (73%)
defacto 13 (27%)
Education level
university 20 (42%)
post-secondary 21 (44%)
higher secondary 1 (2%)
secondary 6 (12%)
Employment status
employed 44 (92%)
not employed 4 (8%)
First child
Yes 28 (60%)
no 20 (40%)
Previous NICU experience
yes 2 (4%)
no 46 (96%)
Attended antenatal tour (n = 26)
yes 9 (35%)
no 17(65%)
Infant characteristics (n = 48)
Gender
male 28 (58%)
female 20 (42%)
Gestational age (weeks)
28–34 2 (4%)
> 34–37 13 (27%)
> 37 33 (69%)
Birth weight (grams)
< 1500 1 (2%)
> 1501–2500 10 (21%)
> 2501 37 (77%)
Antenatal diagnosis
yes 26 (54%)
no 22 (46%)
Died before discharge
Yes 2 (4%)
no 46 (96%)
Length of stay (days)
mean (SD) 21.7 (12.25)
median (IQR) 17.0 (19.00)
minimum–maximuma 5–53
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a Three outliers (>3 SD’s) excluded (68, 104, 179 days)

Most infants were term-born (33, 69%). Table 2 shows infant surgical diagnoses. Most infants had gastro-intestinal disorders (37, 79%).

Table 2. Infant surgical diagnoses (N = 48).

Surgical diagnosis Frequencyn (%)
Gastro-intestinal
Tracheo-oesophageal atresia/ fistula 11(23%)
Gastroschisis 6 (13%)
Duodenal atresia 8 (17%)
Imperforate anus 3 (6%)
Hirschprung’s disease 4 (8%)
Congenital malrotation 3 (6%)
Cleft lip /palate with multiple anomalies 1 (2.1%)
Exomphalos 1 (2.1%)
Meconium ileus 1 (2.1%)
Total 37 (79.3%)
Respiratory
Diaphragmatic hernia 4 (8%)
Congenital cystic adenomatoid malformation 1 (2.1%)
Total 5 (10.1%)
Genito-urinary
Congenital hydronephrosis with posterior- urethral valves 3 (4%)
Bladder exstrophy 1 (2.1%)
Total 4 (6.1%)
Neurological
Spina bifida with myelomeningocele 2 (4.5%)
Total 2 (4.5%)
Total 48 (100%)
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No significant relationships were found between father and infant demographics, nor any demographics with outcome measures.

Fathers’ most and least important needs

Fathers’ ten most important needs at admission and discharge are presented in Table 3. Identifying the order of the most important needs is particularly relevant for informing clinical practice. At admission, five of these most important needs related to Assurance. At discharge, the ten most important needs included five new items. The importance of receiving prior orientation to the NICU increased significantly and the need to visit anytime had decreased significantly. ‘To have questions answered honestly’ was consistently (admission and discharge) the most important need for fathers.

Table 3. Ten most important needs of fathers at admission and discharge.

Ten most important needs at admission (N = 48) NFNI Subscale Mean score SD
To have questions answered honestly Assurance 3.96 0.202
To know NICU staff provide comfort to my infant Comfort 3.94 0.245
To visit my infant anytimea Proximity 3.92 0.279
To know the expected outcome Assurance 3.92 0.279
To be assured best care provided Assurance 3.90 0.309
To know my baby is treated for pain Assurance 3.90 0.371
To know about medical treatment Information 3.90 0.309
To know exactly what is done to my baby Information 3.88 0.334
To know hospital staff care about my baby Assurance 3.88 0.334
To see my baby frequently Proximity 3.88 0.334
Ten most important needs at discharge (N = 23)
To have questions answered honestly Assurance 4.00 0.000
To know hospital staff care about my baby Assurance 3.96 0.209
To know exactly what is done to my baby Information 3.96 0.209
To be called at home Information 3.96 0.209
To know NICU staff provide comfort to my infant Comfort 3.91 0.288
To see my baby frequently Proximity 3.91 0.288
To know specific facts concerning my infant’s progress Assurance 3.91 0.288
To be allowed to help with my infant’s physical care Information 3.91 0.288
To have explanations of the NICU environment before entering for the first timeb Support 3.91 0.288
To be recognised as important in my infant’s recovery Assurance 3.91 0.417
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NFNI = Neonatal Family Needs Inventory; items in italics were consistent over time

a significantly less important at discharge (M = 3.74, SD = .449, t = 2.47, 95% CI (mean difference) = .04 − .40, p = .02)

b significantly more important at discharge (M = 3.43, SD = .843, t = -2.31, 95% CI (mean difference) = -.49 − -.03, p = .03)

The ten least important needs at admission and discharge are presented in Table 4. At admission, five of the ten least important needs were related to Support. The importance of these ten needs increased at discharge, with the need for clergical visits and comfortable furniture increasing significantly. Classes about premature babies and feeling it is acceptable to cry became more important to fathers at discharge.

Table 4. Ten least important needs of fathers at admission and discharge.

Ten least important needs at admission (N = 48) NFNI Subscale Mean score SD
To have pastor /clergy to visit Support 2.08 1.217
To have someone to help bring me to the hospital Support 2.33 1.191
To have a phone near the waiting area Comfort 2.48 1.220
To have comfortable furniture Comfort 2.71 1.031
To have support groups Support 2.73 1.026
To have classes on premature infants Information 2.79 1.237
To have a bathroom near the waiting area Comfort 2.92 1.048
To feel alright to cry Information 2.94 1.119
To be shown concern about my health Support 2.96 1.220
To help with the reactions of my infant’s siblings Support 2.96 1.220
Ten least important needs at discharge (N = 23)
To have a phone near the waiting area Comfort 2.61 1.340
To have someone to help bring me to the hospital Support 2.78 1.126
To have pastor /clergy to visita Support 3.13 1.100
To be shown concern about my health Support 3.17 0.937
To have a bathroom near the waiting area Comfort 3.23 1.066
To have another person with them when visiting the NICU Support 3.30 0.822
To have comfortable furnitureb Comfort 3.43 0.843
To have support groups Support 3.43 0.945
To have reading materials about my infant’s medical condition Information 3.43 0.896
To help with the reactions of my infant’s siblings Support 3.45 0.858
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NFNI = Neonatal Family Needs Inventory

a significantly more important at discharge (t = - 3.54, 95% CI (mean difference) = - 1.38 − -.36, p = .002)

b significantly more important at discharge (t = -2.61, 95% CI (mean difference) = -1.09 − -.13, p = .016)

Needs-met and Social Desirability Scores (SDS)

The ten most important needs at admission were met by the health-professionals more than 92% of the time. The most important need—to have questions answered honestly—was met for 98% of fathers. There were no significant correlations between mean Social Desirability Score (M = 8.4, SD 2.58) and total needs met (M = 47.8, SD 6.97; r = .12, p = .407), or the number of needs met of the ten most important needs (M = 9.7, SD .93; r = .15, p = .279).

NFNI subscale scores on admission and discharge

Subscale level analysis showed that at admission fathers rated Assurance (M = 3.8, SD 0.266) needs highest in importance, followed by Proximity (M = 3.6, SD 0.35), Information (M = 3.5, SD 0.40), Support (M = 3.1, SD 0.51) and Comfort (M = 3.1, SD 0.62). At admission, differences in subscale mean scores were statistically significant (all p’s < .001), except for Proximity versus Information (p = .162), and Support versus Comfort (p = .643). Assurance showed the highest effect sizes (moderate to large, see Fig 1). Fig 1 presents the order of subscales at admission (n = 48) and discharge (n = 23) showing only Support and Comfort changed place. At discharge, the importance of each subscale increased but paired analysis showed the increases were not statistically significant.

Fig 1. Mean importance of neonatal family needs inventory subscales for fathers at admission and discharge.

Fig 1

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Error bars: +/- 1.4 x standard error of the mean (SEM). Effect sizes (Cohen’s d) for subscales at admission based on comparisons using dependent data (n = 48) were A vs P = 0.6, A:I = 0.7, A:S = 1.4, A:C = 1.2; P:I = 0.2, P:S = 0.96, P:C = 0.8; I:S = 0.8, I:C = 0.7; S:C = 0.05 where A = Assurance, P = Proximity, I = Information, S = Support, C = Comfort. Comparisons using dependent t-tests (n = 23) showed no statistically significant differences on subscale scores between admission and discharge.

Discussion

This study identifies the ten most and least important needs of fathers of newborns undergoing general surgery for major congenital anomalies. Identifying needs by order of importance informs evidence-based practice. The results demonstrate that fathers’ needs may change between admission and discharge, and that needs were mostly met by NICU health-care professionals.

At both admission and discharge, fathers rated Assurance as most important, followed by Proximity and Information. This finding is similar to other quantitative studies that included fathers, however one of these studies looked only at very preterm infants [9] and the other involved 10 fathers of infants without surgical conditions [8]. Our results highlight that assuring fathers warrants the attention of NICU health-care professionals in their clinical practice. At discharge Comfort gained higher priority than Support, but changes were not statistically significant. No comparative findings for this result have been reported in the literature.

Items on the Assurance subscale relate to information that parents find reassuring about infant’s care and outcome. Five of the ten most important needs at admission relate to assuring fathers; in particular they want to be given honest information about prognosis, have questions answered honestly, know their baby’s pain is well-managed, that their baby is getting best care, and that staff care about their infant. These needs align with the sense of security and control that are important for promoting fathers’ involvement in the NICU [11,21].

Although most neonates in NICU undergo multiple painful procedures [22], fathers’ focus on pain management may have been intensified because their infants had undergone painful surgical procedures and peri-operative care. It was also most important to fathers that staff attend to their infants’ comfort. Such things as swaddling, containment and nesting, providing a pacifier and talking softly reassured fathers. Given that this NICU promotes individualised developmental-care [23], it is possible that fathers may have been influenced by staff prioritising these practices and, perhaps, witnessed benefits for their infants [24].

At admission, fathers’ other most important needs related to Proximity (i.e. physical nearness and information promoting a sense of nearness to their infant), most importantly being able to visit anytime and frequently. At discharge, ‘visiting anytime’ was no longer among the ten most important needs, likely related to impending discharge or perhaps reflecting the open-access visiting policy of the study NICU. Seeing their infant frequently, however, remained among fathers’ most important needs; reflecting the nearness that is important to the developing father-infant relationship [25].

The Information subscale relates to communication practices—specifically, conveying information and education, and communicating psychosocial support (e.g., it’s alright to cry). At admission, fathers’ most important needs included knowing about medical treatment and exactly what is being done for their infant. While keeping fathers informed remained important at discharge, knowing about medical treatment was replaced with wanting to know specific facts concerning their infant’s progress and being called at home about changes in infant condition; possibly these relate to impending discharge. Fathers also placed greater importance on being shown how to help with their infant’s physical care. These findings likely reflect fathers’ change of focus to discharge and parenting at home. Fathers’ need for information is consistently identified as a priority across studies [11,21,26].

Notably, there was only one item from the Support subscale (interpersonal emotional support) among fathers’ ten most important needs. The need to have explanations of the NICU environment before entering for the first time became significantly more important at discharge than it was at admission. Perhaps initially more urgent matters take greater priority and some fathers may be dealing with shock [24]. This result accords with qualitative findings that highlight the need for strategies promoting fathers’ sense of control through knowledge and information [11,21,26].

Interestingly, at discharge fathers placed greater importance on wanting to be ‘recognised as having an important role in their infant’s recovery’ and ‘being shown how to help with their infant’s physical care’ than they did on admission. The finding is concerning because it may suggest that fathers were not given adequate recognition and involvement in the NICU. Evidence from qualitative studies indicate that although fathers want staff to prioritise mothers, they also want to be seen as individuals with an important role beyond ‘support’ and want to establish a unique relationship with their infant [11,14,21,25,26,27]. These studies and our findings suggest that despite family-centered care practices it seems health-care professionals continue to focus on mothers. NICU health-care providers are well-placed to offer greater assurance to fathers and to acknowledge their unique role in infant well-being. Over the past decade, the pivotal role fathers play in infant and child development has received wider attention [28], suggesting greater emphasis is warranted on supporting the role of fathers in the NICU.

Five of the least important needs on admission were from the Support subscale. Other studies that included fathers have reported similar findings [8, 9]. Although remaining among the least important needs, having comfortable furniture and a pastor or clergy visit were significantly more important at discharge. Perhaps when the infant is no longer gravely-ill, and fathers have constantly juggled commitments outside the NICU (e.g., work, sibling-care), they are more likely to identify practical needs relating to their own comfort and support [7,25]. Interestingly, our findings align with others that show fathers prefer to seek support from external sources (rather than support groups in the NICU) [11,21,27,29]. While similar findings have been reported [8,9] it is also possible that the term ‘clergy’ was not culturally-sensitive for multi-denominational Australia.

Items related to personal physical comfort and interpersonal/emotional support (including parent support groups) were consistently rated among fathers’ lowest needs. This may reflect fathers’ focus on their critically-ill infant and their tendency to prioritise the comfort and support needs of the mother and infant above their own. This finding is supported in a recent review by Ireland et al., [14] which concludes that most fathers generally prefer a ‘back-ground’ supportive role and give priority to the needs of mothers and infants.

Strengths and limitations

This appears to be the first reported study on the needs of fathers of infants undergoing general surgery in an NICU. As such it is difficult to assess the representativeness of the sample, and the generalisability of findings to the population of fathers in surgical NICUs. However, because the study comprised fathers who were predominantly highly-educated, employed, and married the sample may not be reflective of the population as a whole and their responses may have limited generalisability. Further, our sample included only fathers who were literate in English; this could be an area for other researchers to explore.

The sampling method may have been a possible limitation as only fathers present within 48–72 hours of the NICU admission were approached as this is the period during which surgery is most likely to happen. It is also when fathers may be ‘juggling’ commitments [14, 25]. That ten fathers (10/59, 17%) declined participation due to time-constraints suggests consideration is needed for fathers who face responsibilities outside of the NICU. The demographic results, however, suggest that infants in this study are broadly-representative of neonates in NICU’s who undergo general surgery [3].

A strength of this study was the number of fathers who participated. This is considerably larger than previously reported in quantitative studies which included fathers whose infants required surgery [8–10]. Overall, studies of fathers’ experiences in NICU (both qualitative [13] and quantitative) have predominantly focussed on premature and very-low birthweight infants, resulting in a paucity of evidence specifically about fathers of newborns requiring surgery for major non-cardiac congenital anomalies [6]. Despite the challenges of recruiting fathers in research, we achieved a recruitment rate of 83% (49/59) and 48% follow-up. Fathers were asked to complete and return questionnaires before leaving the hospital; those who did not were contacted by research personnel, with minimal response.

Other studies have excluded neonates with ‘unknown prognosis’, yet data from these fathers would likely enrich the evidence-base. The current study included two fathers whose neonates died before NICU discharge; an insufficient number for robust comparisons.

The study also explored whether the needs of fathers were met by NICU health-care professionals. To the authors’ knowledge this has not previously been reported. Notably, fathers’ ten most important needs were very well met. Further, SDS scores showed no evidence of social-desirability bias in fathers’ responses.

This is the first Australian study we are aware of to use the NFNI, and more evidence is needed of its validity in this context. Further, the use of this tool has not been widely-reported. There are number of considerations regarding self-report measures. Even though fathers were advised that their responses were confidential, it may be that fathers are reluctant to admit the importance of their needs; implying perhaps higher levels of importance than our results showed. Our findings suggest that the NFNI may be appropriate for use with fathers in a NICU setting and may have validity to discern unique and changing needs.

Conclusion and clinical implications

The need for assurance is a priority for fathers of neonates in a surgical NICU. Fathers are particularly concerned about pain management and infant comfort. Health-care professionals are relied upon to provide reliable, honest information and open-access visiting. A multi-layered approach to NICU practices that includes individualised family-centered care is recommended to best meet fathers’ needs. Our findings suggest fathers want to be actively-involved and that fathers seek greater recognition of their role in the NICU—beyond being the ‘other’ parent.

Acknowledgments

We are grateful to all the fathers, Dr Peter Barr for his editorial comments and Mrs Claire Galea for her statistical assistance.

Data Availability

There are ethical and legal restrictions on sharing de-identified data set. Data from the study are available upon request, as there are legal restrictions on sharing these data publicly as these data contains sensitive and identifiable information. The data set contains details including birthweight, gestational age, gender, antenatal diagnosis, surgical diagnosis, fathers’ age, and birth country. Such information may be used to directly identify individuals, as the study site is one of only 3 state-wide referral centers in New South Wales for neonatal surgery of major congenital anomalies and each year there are relatively few neonates requiring surgery for each specific surgical diagnoses. The informed consent signed by the study participants and approved by the Internal Ethics Review Committee of the Children’s Hospital at Westmead, did not ask fathers about data sharing. Researchers who meet the criteria for access to confidential data may contact the corresponding author or the Executive officer, KIDS Research, Asra Gholami, 02-98453066 or asra.gholami@health.nsw.gov.au, and provide the ethics reference number: HREC/13/SCHN/22.

Funding Statement

This research did not receive any grant from funding agencies in the public, commercial, or non-for-profit sectors.

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Decision Letter 0

Jayasree Nair

5 Feb 2020

PONE-D-19-33546

Fathers’ needs in a surgical neonatal intensive care unit (NICU): Assuring the other parent

PLOS ONE

Dear Ms Govindaswamy,

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Jayasree Nair, MBBS MD FAAP

Academic Editor

PLOS ONE

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1. Please include additional information regarding the scale or questionnaire used in the study and ensure that you have provided sufficient details that others could replicate the analyses. For instance, if you developed a questionnaire as part of this study and it is not under a copyright more restrictive than CC-BY, please include a copy, in both the original language and English, as Supporting Information.

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Reviewer #1: Yes

Reviewer #2: Yes

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Reviewer #1: Yes

Reviewer #2: Yes

**********

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The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: No

Reviewer #2: Yes

**********

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Reviewer #1: This is an excellent piece of work

1. Why did the authors choose the 48-72 hour time period after NICU admission for the 1st assessment?

2. Were the questionnaires anonymized or did the fathers know that the investigators would be able to identify them?

3. 23 fathers completed the questionnaire at discharge. What happened to the remaining 25? Did they refuse consent for the 2nd questionnaire? What were the demographic characteristics of the fathers who completed the questionnaire at discharge, and were there differences between them and those who did not answer the discharge questionnaire?

4. On page 6, line 122, it is not clear what is meant by “no significant relationships were found between father demographics”. Between father demographics and what?

5. Table 2 suggests that the surgical diagnoses were mutually exclusive. Were there no patients with more than 1 surgical problem?

6. Were the relationships between the responses at discharge and the duration of hospital stay, duration of NICU stay, type of surgical diagnosis, and outcome of surgical procedure, explored?

7. Does the unit have a policy of discharging all patients to home from the unit itself, or are there patients that are back-referred to a level II unit, and from there discharged home? Does “discharge” in this manuscript always mean being discharged home, or could it also mean discharge from the unit and being transferred to a stepdown care unit?

8. Did patients spend their entire time in the NICU, or were they transferred to a high dependency unit or ward before discharge? Was the set of doctors and nurses looking after the patient at the time of discharge the same as the one looking after the patient between 48-72 hrs after admission?

9. In the statistical analysis section, kindly clarify which paired tests were used for the responses on Likert scale?

10. For ease of analysis, it is probably okay to code “not applicable” as 0. But conceptually, it is not as though being “not applicable” is part of a continuum of responses that relate to the importance of a particular question. Coding it as 0 for the purpose of analysis implies that it occupies the least importance in the scale of importance, but that is not true. Had a “non-applicable” item been applicable for an individual subject, it is possible that it may have been accorded a great deal of importance. For example, availability of a clergyman may have been non-applicable for a large number of fathers, owing to their religious background; but had it been applicable, it may have been accorded importance.

Reviewer #2: This is a well-written manuscript describing the results of a prospective cohort study using surveys of fathers at admission and discharge to a surgical NICU. The methodology is sound, and results are presented in a format appropriate for a descriptive study. The change in fathers’ perceptions between admission and discharge has been presented well and relevant items are discussed. Validity of the tool used in this study was established at a previous study. The results of the study provides useful information about fathers' needs.

However, one major concern needs to be addressed. The authors mention that the data presented in this study formed part of a larger study. It is unclear if the entire paper is based on results using a subset of the data already presented on the previous paper by the authors’ group, or if any new surveys were added during the same timeline (reference 15- Govindaswamy P, Laing S, Waters D, Walker K, Spence K, Badawi N. Needs of parents in a surgical neonatal intensive care unit. J Paediatr Child Health. 2019;55(5):567–573. doi:10.1111/jpc.14249). It is important to clarify if this is, in essence, a subgroup analysis of results from their previous published study.

**********

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Reviewer #1: No

Reviewer #2: No

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PLoS One. 2020 May 6;15(5):e0232190. doi: 10.1371/journal.pone.0232190.r002

Author response to Decision Letter 0

25 Mar 2020

Manuscript Number: PONE-D-19-33546

Response to Academic Editor’s requests:

Dear Dr Nair, please see our responses to your instructions.

1. Please include additional information regarding the scale or questionnaire used in the study and ensure that you have provided sufficient details that others could replicate the analyses. For instance, if you developed a questionnaire as part of this study and it is not under a copyright more restrictive than CC-BY, please include a copy, in both the original language and English, as Supporting Information.

The two questionnaires used in the study are both published tools, the relevant references are given in the Methods section of the paper. The Neonatal Family Needs Inventory is copy-righted and was used in our study with permission from the tool developer. The Social Desirability Scale is freely-available (link now provided in the manuscript). We have amended the manuscript to better highlight the information that would assist others seeking to access these tools.

2. Please provide additional details regarding participant consent. In the ethics statement in the online submission form, please ensure that you have specified whether consent was informed.

We have ensured that in the online submission form we have specified that consent was informed. As far as we could ascertain, we provided the required information, however, we have checked to ensure this information is specified.

3. In your Methods section, please provide additional information about the participant recruitment method and the demographic details of your participants. Please ensure you have provided sufficient details to replicate the analyses such as: a) the recruitment date range (month and year), b) a description of how participants were recruited.

We have added the following information to the Methods section of the paper: a) dates to the months and years that were stated in the paper; b) a description that more fully explains the process of recruitment, as shown below.

Based on inclusion criteria, the primary investigator (PI) approached all eligible fathers and provided them with an information sheet explaining the study purpose, primary investigator’s contact information, and that choosing not to participate in the study would not affect care of their infant. Fathers who indicated to the PI that they wanted to participate were then asked to sign a written informed consent that included data collection at both admission and discharge, and given an envelope containing the anonymized questionnaires.

4. Please amend either the title on the online submission form (via Edit Submission) or the title in the manuscript so that they are identical.

Thank you for drawing our attention to this. We have ensured that the titles appearing in these two places are identical.

5. Please ensure that you include a title page within your main document. You should list all authors and all affiliations as per our author instructions and clearly indicate the corresponding author. We appreciate that you have your title page upload separately, but please remove this file once you have included it within the manuscript file.

Thank you for clarifying this issue. We have removed the file as directed and included the title page in the main document.

Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: No

Reviewer #2: Yes

We note the discrepancies between the Reviewers responses’. Please note that we submitted the following declaration with the original manuscript as required: There are ethical and legal restrictions on sharing de-identified data set. Data from the study are available upon request, as there are legal restrictions on sharing these data publicly as these data contains sensitive and identifiable information. The data set contains details including birthweight, gestational age, gender, antenatal diagnosis, surgical diagnosis, fathers’ age, and birth country. Such information may be used to directly identify individuals, as the study site is one of only 3 state-wide referral centres in New South Wales for neonatal surgery of major congenital anomalies and each year there are relatively few neonates requiring surgery for each specific surgical diagnoses. The informed consent signed by the study participants and approved by the Internal Ethics Review Committee of the Children’s Hospital at Westmead, did not ask fathers about data sharing. Researchers who meet the criteria for access to confidential data may contact the corresponding author or the Executive officer, KIDS Research, Asra Gholami, 02-98453066 or asra.gholami@health.nsw.gov.au, and provide the ethics reference number: HREC/13/SCHN/22.

 

Manuscript Number: PONE-D-19-33546

Response to Reviewer #1.

Thank you for reviewing our manuscript and allowing us the opportunity to address your concerns. We have amended the manuscript to address your comments. Parts of the manuscript that related to your comments are now highlighted in yellow and new additions to the text appear in purple-coloured font.

Reviewer #1: This is an excellent piece of work

Thank you for your encouraging comment.

1. Why did the authors choose the 48-72 hour time period after NICU admission for the 1st assessment?

Thank you for highlighting that this information needed to be more clearly stated in the manuscript. We noted this time-frame and the reason for choosing it in the Discussion section, but acting on your comment we have added the following information to the Sample section of the Methods: This time-frame was chosen as it is the period during which surgery is most likely to happen and fathers are most likely to be present.

2. Were the questionnaires anonymized or did the fathers know that the investigators would be able to identify them?

Names of fathers were not collected on the questionnaires. Following consent, the primary investigator assigned participating fathers a study identification code based on the baby’s study identification number. These codes were noted on the questionnaires to allow matching of fathers’ responses at the two data collection time-points and to their infant data. Codes were known only to the primary investigator, kept confidential and stored in accordance with ethics requirements. This is now stated in the Methods section of the manuscript under the heading Procedure: Fathers who indicated to the PI that they wanted to participate were then asked to sign a written informed consent that included data collection at both admission and discharge, and given an envelope containing the anonymized questionnaires. Participating fathers were assigned a study identification code based on the baby’s study identification number. Codes were known only to the primary investigator, kept confidential and stored in accordance with ethics requirements.

3. 23 fathers completed the questionnaire at discharge. What happened to the remaining 25? Did they refuse consent for the 2nd questionnaire? What were the demographic characteristics of the fathers who completed the questionnaire at discharge, and were there differences between them and those who did not answer the discharge questionnaire?

Thank you for drawing our attention to clarifying this aspect. At the time of consent, fathers were informed that they would be asked to repeat the questionnaire at the time of discharge, and that they were consenting to participate in data collection at both admission and discharge. All 48 fathers’ received a second (repeat) NFNI questionnaire at least two days prior to planned-discharge. They were asked to either return the questionnaire before leaving the hospital (by handing the sealed envelope to a member of the research team or by placing it in the locked box located near the unit for this purpose) or use the enclosed return-addressed envelope to mail the survey to the primary investigator (PI). Twenty-five fathers did not return the questionnaire. The PI monitored the return of questionnaires and, using the study codes accessible to her only, phoned fathers whose questionnaires had not been received within the week following discharge. This, however, did not result in further questionnaires being returned. Please note that we have added these further details to the Procedure section of the Methods.

To address your other comment, we have added the following to the Results: No significant differences were found on any infant or father characteristics between the fathers who did (n=23) and those who did not (n=25) complete NFNI questionnaires at discharge. The small subgroup numbers, however, must be considered when interpreting these results.

Given the lack of significant differences and consideration for space, we thought it unnecessary to report the demographics for these two groups of fathers separately.

4. On page 6, line 122, it is not clear what is meant by “no significant relationships were found between father demographics”. Between father demographics and what?

Thank you for drawing our attention to this and please accept our apologies for this typographical error (and our proof-reading oversight!). This sentence now reads: No significant relationships were found within father demographics, or between father demographics and outcome measures at either admission or discharge. Interpretation of these results, however, warrants caution due to some small subgroup numbers.

5. Table 2 suggests that the surgical diagnoses were mutually exclusive. Were there no patients with more than 1 surgical problem?

Six infants presented with more than one surgical condition. None of these infants, however, underwent surgery for more than one of these conditions while in the NICU. As such, Table 2 presents the mutually exclusive conditions for which babies underwent surgery while in the NICU. We have added this information to the Results section: Six infants presented with more than one surgical condition, but none underwent surgery for more than one of these conditions while in the study NICU. As such, the surgical conditions presented in Table 2 were mutually exclusive.

6. Were the relationships between the responses at discharge and the duration of hospital stay, duration of NICU stay, type of surgical diagnosis, and outcome of surgical procedure, explored?

Thank you for highlighting the need to clarify this information. We explored relationships and associations between all infant characteristics (all variables shown in Table 1, as well as the surgical conditions) and fathers’ responses both at admission and discharge. With the exception of death while in the NICU, we did not collect details regarding outcome of surgical procedure. As shown in Table 1 and mentioned in the Discussion, two babies died while in the NICU – a number that did not support robust subgroup analyses. With the exception of two babies who were transferred to another ward in the hospital, the study babies remained in the study NICU for the duration of their hospital stay. We have added this information as a note to Table 1.

The purpose of our study was to inform care-practices in the surgical NICU, with particular focus on informing strategies that may assist fathers at the very stressful time early in their infant’s NICU admission and when preparing for discharge, which for infants in this unit is predominantly discharge to home. As only two babies went to other wards in the hospital, this was not a sufficient number for robust subgroup analyses of discharge data.

The relevant findings are highlighted in the Results, and we have added the following paragraph to the Discussion: No significant relationships were found between father characteristics, infant characteristics and fathers’ needs at discharge. Interpretation of these results, however, warrants caution due to small subgroup numbers.

7. Does the unit have a policy of discharging all patients to home from the unit itself, or are there patients that are back-referred to a level II unit, and from there discharged home? Does “discharge” in this manuscript always mean being discharged home, or could it also mean discharge from the unit and being transferred to a stepdown care unit?

The study unit is a level-3 NICU that provides level 6 care, which is defined by the New South Wales Department of Health as care that includes specialist surgical services (https://www1.health.nsw.gov.au/pds/ActivePDSDocuments/GL2016_018.pdf). The unit does not have a definite policy stipulating that infants can be only be discharged home. However, this tends to be the norm. Infants may be transferred to other wards in the hospital or to level-2 units elsewhere if extended time is required for establishing feeds, or educating parents about on-going care in preparation for discharge home.

A small portion of our surgical NICU population comprises babies needing surgery for other reasons, including preterm infants. These babies are transferred to our unit from other (generally perinatal) NICU’s. When post-operatively stable and fit for transport, they are transferred back to the referring NICU. All the babies in the study sample were discharged home from the study unit except two babies who were transferred to another ward within the hospital.

We have added to the Discussion: Although the unit does not have a policy stipulating that infants can only be discharged home, this tends to be the norm. Infants may be transferred to other wards in the hospital or to level-2 units elsewhere if extended time is required for establishing feeds, or educating parents about on-going care in preparation for discharge home. All the babies in the study sample were discharged home from the study unit except two babies who were transferred to another ward within the hospital. It is possible that fathers’ needs at discharge may differ based on outcomes of surgery and transfer of the infant rather than discharge home. Obtaining sufficient numbers and diversity for predictive studies regarding risk factors and subgroup comparisons in this unique parent population would likely require multisite research.

8. Did patients spend their entire time in the NICU, or were they transferred to a high dependency unit or ward before discharge? Was the set of doctors and nurses looking after the patient at the time of discharge the same as the one looking after the patient between 48-72 hrs after admission?

Thank you for drawing our attention to this aspect. All the study babies remained in the study unit for the duration of their admission. Consequently, the same staff of doctors and nurses looked after the patients for their entire stay. The probability of a particular staff member being allocated to care for a baby is the same at admission and discharge, given consideration for the usual factors of staff skill-mix and infant acuity at the time of allocation.

9. In the statistical analysis section, kindly clarify which paired tests were used for the responses on Likert scale?

Likert-scale responses were analysed using paired samples t-tests and Wilcoxon Signed-Rank Tests. The following has been added to the Statistical analysis section of the manuscript: e.g., paired t-tests and Wilcoxon Signed-Rank tests were used for comparing NFNI admission and discharge data.

10. For ease of analysis, it is probably okay to code “not applicable” as 0. But conceptually, it is not as though being “not applicable” is part of a continuum of responses that relate to the importance of a particular question. Coding it as 0 for the purpose of analysis implies that it occupies the least importance in the scale of importance, but that is not true. Had a “non-applicable” item been applicable for an individual subject, it is possible that it may have been accorded a great deal of importance. For example, availability of a clergyman may have been non-applicable for a large number of fathers, owing to their religious background; but

As this is a self-report tool, fathers have assigned importance to items that were (presumably) personally relevant them. As such, and as you have noted, not all items may have been relevant (i.e. applicable) to all fathers. It appears that fathers chose the option of responding ‘not applicable’, rather than ‘guessing’ how important a need may be if it applied to them. Re-coding ‘not applicable’ to ‘0’ was necessary because using a rating of ‘5’ as per the original version of the tool would distort interpretation of the results. Please note that we are not allocating a ‘global’ judgement regarding the importance of an item across all contexts. Our coding is intended to reflect that for a particular individual in our study sample a particular item held least importance because it did not apply to that individual.

As acknowledged, our findings are based on the responses of our study sample. We have noted the characteristics of the fathers in our study and the possible limitations these impose on generalisation of our findings. We have also noted that it is difficult to assess the representativeness of our sample, given the scant data available regarding this particular type of NICU father population. More research is warranted in this important area, with more diverse samples of fathers, and more publications reporting the findings in the literature would assist in developing an evidence-base for clinical practice.

 

Manuscript Number: PONE-D-19-33546

Response to Reviewer #2.

Reviewer #2: This is a well-written manuscript describing the results of a prospective cohort study using surveys of fathers at admission and discharge to a surgical NICU. The methodology is sound, and results are presented in a format appropriate for a descriptive study. The change in fathers’ perceptions between admission and discharge has been presented well and relevant items are discussed. Validity of the tool used in this study was established at a previous study. The results of the study provides useful information about fathers' needs.

However, one major concern needs to be addressed. The authors mention that the data presented in this study formed part of a larger study. It is unclear if the entire paper is based on results using a subset of the data already presented on the previous paper by the authors’ group, or if any new surveys were added during the same timeline (reference 15- Govindaswamy P, Laing S, Waters D, Walker K, Spence K, Badawi N. Needs of parents in a surgical neonatal intensive care unit. J Paediatr Child Health. 2019;55(5):567–573. doi:10.1111/jpc.14249). It is important to clarify if this is, in essence, a subgroup analysis of results from their previous published study.

Thank you for your encouraging words regarding the study and our manuscript. We note your concern and hope that we are able to address it satisfactorily. We would like to clarify that the fathers’ data used for analysis in this paper comprised a subset of data from the larger study, and no new surveys were added during the same timeline. However, we would also like to clarify that while the paper presents results from a subgroup analysis of the larger dataset, the current paper presents fathers’ results not previously reported. Notably: comparison of fathers’ item level data (individual needs) at admission and discharge; reporting of fathers’ needs-met results, Social Desirability Scale scores for fathers, and relationship between these variables for fathers; fathers’ ten most important and ten least important needs at admission; changes in order of subscale importance for fathers between admission and discharge; statistically significant differences between subscales at admission and discharge for fathers; effect sizes (Cohen’s d values) for subscales for fathers at admission. Further, the discussion provides a comprehensive consideration of the findings that focuses on meaningful interpretation within the context of better understanding fathers’ needs and their fathering role in the NICU.

Despite society’s changing notions about fathering and increasing recognition of fathers’ important role in family and infant well-being, fathers continue to be an under-researched group among NICU parent populations. In particular, there are few quantitative studies reported about fathers, and very little is known about fathers whose babies require general surgery for major congenital anomalies in the newborn period. Please be assured that our manuscript presents a novel and unique contribution to an evidence-base that would inform practices for better supporting fathers in the NICU.

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Decision Letter 1

Jayasree Nair

9 Apr 2020

Fathers’ needs in a surgical neonatal intensive care unit: Assuring the other parent

PONE-D-19-33546R1

Dear Dr. Govindaswamy,

We are pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it complies with all outstanding technical requirements.

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Acceptance letter

Jayasree Nair

13 Apr 2020

PONE-D-19-33546R1

Fathers’ needs in a surgical neonatal intensive care unit: Assuring the other parent

Dear Dr. Govindaswamy:

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on behalf of

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Associated Data

    This section collects any data citations, data availability statements, or supplementary materials included in this article.

    Supplementary Materials

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    Data Availability Statement

    There are ethical and legal restrictions on sharing de-identified data set. Data from the study are available upon request, as there are legal restrictions on sharing these data publicly as these data contains sensitive and identifiable information. The data set contains details including birthweight, gestational age, gender, antenatal diagnosis, surgical diagnosis, fathers’ age, and birth country. Such information may be used to directly identify individuals, as the study site is one of only 3 state-wide referral centers in New South Wales for neonatal surgery of major congenital anomalies and each year there are relatively few neonates requiring surgery for each specific surgical diagnoses. The informed consent signed by the study participants and approved by the Internal Ethics Review Committee of the Children’s Hospital at Westmead, did not ask fathers about data sharing. Researchers who meet the criteria for access to confidential data may contact the corresponding author or the Executive officer, KIDS Research, Asra Gholami, 02-98453066 or asra.gholami@health.nsw.gov.au, and provide the ethics reference number: HREC/13/SCHN/22.

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