Fathers' Experiences in Alberta Family Integrated Care: A Qualitative Study : The Journal of Perinatal & Neonatal Nursing

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Fathers' Experiences in Alberta Family Integrated Care

A Qualitative Study

Shafey, Amy MD, MSc; Benzies, Karen PhD, RN; Amin, Reshma MD, MSc; Stelfox, Henry T. PhD, MD; Shah, Vibhuti MD, MSc

Author Information
The Journal of Perinatal & Neonatal Nursing: October/December 2022 - Volume 36 - Issue 4 - p 371-379
doi: 10.1097/JPN.0000000000000684

Abstract

With the news of pregnancy, fathers describe feelings of fear, excitement, and joy.1–3 However, many fathers report a lack of involvement, preparation, and support for the postnatal period.1–3 An infant admitted to the neonatal intensive care unit (NICU) further complicates this transition into parenthood. Fathers report lack of control in the NICU.4 They define their role within the family structure as overseers, protectors, and earners and often prioritize their needs lower than those of the mother and their newborn infant.4,5 They believe that the lack of physical contact with their infant delays their transition into fatherhood.4,6–8 Fathers report using regular communication with members of the healthcare team as a method to be provided with support.4,6,9 In a systematic review of interventions targeted at parents of preterm infants, the majority of interventions involved mothers and not fathers or showed a benefit in mothers but not in fathers.10 Studies that incorporated skin-to-skin care, information about their infant, and peer support groups were shown to be beneficial in fathers, yet no one study incorporated all of these interventions and all were small-scale studies in single centers, thus highlighting a major gap in the literature at present in targeting the fathers' experiences.6,7,11,12

Involving parents in the care of their infant began in 1979 in Tallinn, Estonia, where mothers were taught and expected to provide all the infant's care until discharge.13 Family Integrated Care (FICare) in the level III NICUs involved the presence of a primary caregiver for 8 hours or more per day providing care for their infants, attending, daily medical rounds, and a daily education session for a 21-day period. This model resulted in steeper infant weight gain trajectory and more high-frequency (>6 per day) breast milk feeding after 21 days.14 Parental stress was lower in the intervention group at 21 days post-enrollment as compared with the standard group.14 Based on the advice of regional clinicians, the level III model of FICare was adapted for Alberta (AB) level II NICUs and included 3 components: (1) relational communications (one-to-one communication and bedside rounds), (2) parent education (one-to-one and group education), and (3) parental support from professionals and family mentors (parents with experience in the level II NICU).15 AB FICare may improve paternal experiences in the NICU and support their role in the family. The purpose of this study was to elucidate the experiences of fathers of preterm infants in AB FICare, with the aim of understanding (1) their perceptions of the NICU experience from admission to discharge and (2) their relationships with their partners and infant.

PATIENTS AND METHODS

Setting

This was a qualitative substudy of a multi-center prospective cluster randomized controlled trial (cRCT) design of AB FICare for caregivers of preterm infants in 10 level II NICU sites across Alberta.15 These sites were randomized into 1 of 2 groups: AB FICare (intervention) or standard care (control). AB FICare superuser nurses identified and approached mothers on the unit. Mothers of infants born between 320/7 and 346/7 weeks' gestational age (GA) were recruited into the study within 72 hours of admission to the NICU. Preterm infants were typically discharged around 360/7 weeks' corrected GA if they were healthy and gaining weight. Mothers enrolled at the AB FICare intervention sites agreed to be present in the NICU at least 6 hours/day (approximately equivalent to 3 feedings). The sample size was calculated to be 654 mothers and 765 infants (111 twins).16,17

We obtained ethical approval from the University of Toronto (#35244) and University of Calgary (#15-0067) ethics boards. We applied the consolidated criteria for reporting qualitative research (COREQ) guidelines to this article.18

Participants

We included 2 subsamples of fathers of infants whose mother consented to participate in a cRCT of AB FICare. As part of the cRCT, mothers in both groups were given a parent journal. Mothers in both groups recorded daily out-of-pocket costs, while mothers in the AB FICare group also recorded (1) information about the infant's progress and questions for the multidisciplinary healthcare team, and (2) wrote, “My thoughts for the day ...” Of their own accord, there were fathers who wrote in the mother's journal without any prompts. Retrospectively, we identified fathers' who wrote journal entries of their experience while in the NICU. Data from this first subsample were collected between December 2015 and July 2018.

For the second subsample, between August 2018 and March 2019, we recruited fathers for qualitative interviews. At the 2-month follow-up for the cRCT, mothers were asked whether the father of their preterm infant(s) might be interested in sharing his experiences. Mothers were asked to give the first author's (A.S.) contact information to the father. We also recruited fathers through the study newsletter and online announcements. A.S. provided information about the study, answered questions, and obtained informed electronic consent via Qualtrics, an online data collection platform. We included biological fathers who spoke English well enough to conduct an interview via video-conference or telephone.

Research procedure

A.S., a female neonatologist, interviewed fathers using Skype at a mutually agreeable time. Interviews were conducted using a semistructured interview guide (see Supplemental Digital Content Appendix 1, available at: https://links.lww.com/JPNN/A26) and lasted 45 to 60 minutes. Questions in the interview guide were based on the fathers' experiences identified in the literature and were reviewed for relevance by K.B., V.S., and A.S. Interviews were digitally audio-recorded and verified. Field notes were recorded during and after interviews.

Data analytic approach

We conducted a thematic analysis.19 A.S., K.B., and V.S. systematically coded data from the interviews and the journal entries separately across the entire dataset. The codes were collated into themes and a thematic “map” of analysis was generated. Themes from the journals and the interviews were triangulated at the level of findings (see Figure 1).20 The final stage involved relating the analysis back to the original research question and literature.19,21 We used descriptive statistics (mean and standard deviation [SD] or frequencies and percentages [%]) to describe characteristics of the samples.

F1
Figure 1.:
Example of triangulation for semistructured interviews and journal entries for the theme “mental preparation.”

Rigor

Rigor was addressed through verification strategies such as checking and confirming the data through the use of field notes, digital recorders, and review by the authors.22 Sampling both from interviews and from journal entries at different time points provided detailed data that represented fathers' experiences.20,22 Each subsequent interview was built upon previous interviews and questions were adapted to expand developing themes. An audit trail ensured that processes, decisions, and procedures of the study were documented and justified. Member checking was achieved by submitting a summary of the findings for participants to comment on their perceived accuracy. Five fathers responded and confirmed the accuracy of the findings and no changes were required.

FINDINGS

Characteristics of the participants

A.S. interviewed 13 fathers; 11 interviews were conducted via video-conferencing while 2 were conducted via telephone. Nine fathers were from an AB FICare site and 4 fathers were from a standard care site. The mean (SD) age of the fathers was 37.1 (SD = 7.2) years and the GA of the infants was 33.7 (SD = 0.9) weeks. Eleven fathers were married, 1 was in a common-law relationship, and 1 was divorced. Eleven fathers were employed with a household income of more than $80 000 per year. All fathers were Canadian and Caucasian race. Four were first-time fathers while the rest had either 1 or 2 other children. Two fathers had twins; 2 fathers had a previous preterm infant (< 370/7 weeks) with 1 requiring admission to the NICU.

There were 24 fathers from the FICare sites who recorded journal entries. The mean (SD) GA of infants was 33.4 (SD = 0.8) weeks, with a birth weight of 1948 (SD = 353) g. Four fathers had twins.

Themes

Seven themes were identified: fear of the unknown, mental preparation, identifying fathers' roles, parenting with supervision, effective communication, post-NICU transition, and family life (see Supplemental Digital Content Appendix 2, available at: https://links.lww.com/JPNN/A27). Quotes are attributed to data source (interview or parent journal) and group (AB FICare or standard care).

Fear of the unknown

Fear of the unknown created an emotionally terrifying experience. At the time of birth, fathers often perceived an overwhelming and rushed birthing environment with many individuals in the delivery room, which created uncertainty in their infant's birthing outcome. This urgency created a relative seriousness to the situation (see Table 1, Quote 1A). Following the birth of their infant, fathers continued to experience uncertainty surrounding their infant's health and experienced fears related to medical complications associated with preterm birth (see Table 1, Quote 1B). After discharge from the NICU, fathers experienced a stressful awareness of lack of medical oversight, as infants were no longer on monitors or under the watchful eyes of their medical team (see Table 1, Quote 1C). Fathers subsequently continued to worry about their infant's outcome over the long-term (see Table 1, Quote 1D).

Table 1. - Major themes and supporting quotations
Theme description Example quotes
Fear of the unknown Quote 1A: It was surprising and nerve wracking to find out that mother went into early labour. I did not know what would ... happen to the baby. Everything happened so fast there was no time to react or even come up with a plan or an explanation. (Journal 563, Alberta FICare)
Quote 1B: He was in there for so long, but still a lot of complications that we knew could happen and the concern was always I guess nagging about what could or you know, could not happen. (Interview 10, Alberta FICare)
Quote 1C: You know, we, we took turns staying up awake with him a lot, because we just didn't, you know, sit there and watch him sleep. Because you're not sure, he doesn't have any of the monitors now. He doesn't have any of the stuff. It's happening, so you keep looking out, you keep watching out for him. (Interview 8, Alberta FICare)
Quote 1D: I kind of feel like the experience left us a little uh a little more I don't know how to say this maybe a little more tense, a little more wound up when it comes to our daughter as far as her health is concerned. Ongoing anxiety over health. (Interview 1, Alberta FICare)
Mental preparation Quote 2A: It was around 28 weeks that my wife went for a regular check-up and they noticed very high blood pressure ... one good thing is that ... they kind of prepared us for potentially having a 28 week old baby. We did get an opportunity to tour around the NICU, which was really good, it definitely made the experience when we did go there at 32 weeks a lot less overwhelming just because we had seen it. (Interview 4, standard care)
Quote 2B: She kind of went through the whole stage of you know, one bed to the next, they kind of graduate them up, and then, yeah for the last probably 5 days I want to say, she was kind of in a separate room ... and she was off monitors and stuff by then ... It's nice to not have to worry about you know the feeding tube and the monitor cables and all that, it's more normal, like a normal human. (Interview 11, Alberta FICare)
Identifying fathers' roles Quote 3A: Because you know they're trying to do their job. They're trying to get everything done. And you just kind of want to see ... last thing they need is me fumbling around in their way, right? So, I kind of stood off to the side and watched best I could. It's one of those times you feel quite useless as a person. (Interview 6, standard care)
Quote 3B: They were very encouraging to get that connection ... the skin to skin right away, which ... definitely helped. (Interview 7, Alberta FICare)
Quote 3C: When you introduce a third member to your family ... like the dad's number 3 all of a sudden so. That's going to be in the book I write on being a father its called, “You're number 3” ... Mom's were treated kind of as the primary and um you know it was the way they kind of they didn't really speak to you as a family they speak to mom type of deal in that sense. (Interview 3, standard care)
Parenting with supervision Quote 4A: [Y]ou do feel that you're almost having to ask permission to ... parent your child at times. ... Cause, you know, you're the parent. Especially being the dad, you're the protector ... And you just want to jump in. (Interview 8, FICare)
Quote 4B: Cause at the same time we want to be there but there's also you know when he was feeding on the feeding tube all the time there's not, other than holding him there's not much we can do ... I mean it also changed a bit once he started breastfeeding a little bit. Then we felt more of a purpose to be around or for my wife to be there. (Interview 4, standard care)
Quote 4C: My nurses were just, they were all up front with everything that it was. If we needed something, we'd go get it. If you need this, you go get it ... It helped speed up. It, it was good ... We were basically parenting, with supervision. For, nine days, while we got ready to go home. (Interview 7, Alberta FICare)
Effective communication Quote 5A: Reflecting back now I can't believe that even with everything going on, time was still made for dad to cut the cord as well as to have continuous communication on what was happening and why. Somehow it was extremely calming and reassuring. (Journal 638, Alberta FICare)
Quote 5B: Some of the nurses were fantastic. Being available for rounds and being encouraged to be there when the doctors were doing the rounds was very helpful and everyone was very open and candid and answered any questions um so we tried to make sure that we were always there every day when they came around to do rounds. And that was great. (Interview 4, standard care)
Quote 5C: We struggled with the overnight nurse ... the unit seemed short. Mother was called from her hospital room to the NICU to help out and was treated poorly. The nurse was very rude to my wife and I had to speak to her and tell her that what she did was wrong. I will talk to our head nurse tomorrow. We should not be treated this way. (Journal 609, Alberta FICare)
Post-NICU transition Quote 6A: But once we got home ... the transition was natural ... because of the, you know the encouragement for kangaroo care and feeding and changing and doing regular things with him, he didn't feel like a stranger by any means when we got home. You know, and he was our son, so I think there was a lot of positive stuff that happened at the NICU that helped with that transition. (Interview 8, Alberta FICare)
Quote 6B: The funny part was you know you're kind of always wanting to get home but then you realize that when you have all the help and care at the hospital coming home is a little bit tougher um because it was kind of more like a 9 to 5 thing so my wife would go in every morning and stay until 5. Then we'd go home its 24 hours. But just kind of adjusting to that. (Interview 4, standard care)
Quote 6C: Like having a FICare liaison to say ‘now that you're out we're going to we still have all the things you can access ...We're going to hook you up with the breastfeeding clinic to have that stuff done automatically so kind of not trying to figure out what to do so that she's getting the best care. (Interview 1, Alberta FICare)
Family life Quote 7A: Realizing everything I have to do in a day is stressful. Between work, cleaning, walking our dog, cooking, and traveling to the hospital, my time with baby is limited. (Journal 662, Alberta FICare)
Quote 7B: It's a stressful environment, there was just some frustrations. And once again, it was just I think fatigue, fatigue played a major part of it ... I mean my wife and I were always very close, we were, but it definitely didn't separate us. And I think it did make us a little bit stronger ... because we realized that the team work is going to make the dream work here. We're either going to live by the sword or die by the sword, but we can't be two separate entities. (Interview 13, Alberta FICare)
Quote 7C: I wouldn't say there was any delay in the bonding just because ... we made a point of, of going there and being there for every feeding, and just kind of immersing ourselves into [my child's] life. (Interview 13, Alberta FICare)
Quote 7D: I would suggest it probably felt like a delay because I think the rubber hits the road when it's you. It's your place it's you're in your space you're accountable 24/7 so ... that was certainly a bit of a harder thing for sure. (Interview 3, standard care)

Mental preparation

Fathers who expected an early delivery had greater mental preparation than fathers who did not (see Table 1, Quote 2A). When given anticipatory counseling surrounding the birth of their preterm infant and their subsequent NICU stay, fathers were more prepared compared with those who received little information around issues of preterm birth. Fathers appreciated logistical onboarding surrounding a prolonged NICU stay. This preparation continued throughout the NICU stay, as fathers prepared for the goal of discharge home (see Table 1, Quote 2B). Achieving adequate mental preparation involved regular NICU involvement, support from medical staff, having faith in their infant's progress, being informed of the requirements for discharge and the timing, and having confidence for discharge home.

Identifying fathers' roles

Fathers searched to identify their role and wanted more involvement and equitable support to their partners. Immediately following birth, fathers perceived themselves as being in the way and felt lost and out of place (see Table 1, Quote 3A). Supporting their early involvement and encouraging holding and touching was positive for fathers (see Table 1, Quote 3B). While in the NICU, fathers often felt as though they were treated as the secondary parent (see Table 1, Quote 3C).

Parenting with supervision

Fathers benefitted from parenting with supervision in a positive NICU environment that encouraged parental independence. Fathers noted that the physical environment in the NICU could be a barrier to their involvement. Fathers in both groups described instances of needing permission to parents, as they wanted more independence (see Table 1, Quotes 4A and 4B). Fathers in both groups described a benefit of involvement with the care of their child. In the standard care group, involvement may have occurred more organically when the mother was able to breastfeed (see Table 1, Quote 4B). In the AB FICare group, fathers described more specifically an intentionally inclusive environment that involved bedside teaching and nursing attention, and encouragement to be involved. This supported fathers' independence increased their comfort and reduced their anxiety while preparing them for their discharge home (see Table 1, Quote 4C).

Effective communication

Fathers relied on effective communication to gather information to reduce their anxiety, facilitate support role for their partners, and gain trust in the medical team. At birth, a higher level of communication provided assurance that their infant was receiving high-quality medical care (see Table 1, Quote 5A). In the NICU, the medical staff created a positive experience for fathers if they were knowledgeable, supportive, reassuring, and gave a personal touch and attention (see Table 1, Quote 5B). Fathers described having a negative experience if they felt they were mistreated (see Table 1, Quote 5C). A successful discharge required regular communication with medical staff that helped fathers prepare for discharge home. Lack of communication at any time during the NICU stay was remembered by fathers and carried with them postdischarge.

Post-NICU transition

The post-NICU transition required a gradual separation from the NICU and a reintegration into home life. Only fathers in AB FICare more often attributed their comfort with returning home as secondary to the education and support they received in the NICU (see Table 1, Quote 6A). Fathers in the standard care group described not having the confidence in caring for their infant at home, which took time to obtain. These fathers described the need to recalibrate the care and establish a new routine as they started over, adjusted to 24/7 care, and gained confidence (see Table 1, Quote 6B). Fathers valued postdischarge medical care and support, and described feeling supported by their primary care physicians. Fathers in the intervention group recommended AB FICare continue post-discharge to help parents better navigate the medical system and postdischarge experience (see Table 1, Quote 6C). These fathers believed that their preterm infant's needs and health-related outcomes would be better understood by a NICU medical support team.

Family life

While in the NICU, fathers often faced competing demands between the home and hospital, relying on external support, and attempting to establish a routine (see Table 1, Quote 7A). The NICU experience brought partners closer together, as they sought teamwork through adversity. Fathers described the challenges of stress and fatigue on partner relationships and the negative impact of physical separation (see Table 1, Quote 7B). Only fathers in the AB FICare group attributed their closeness with their infants to their increased involvement in the NICU (see Table 1, Quote 7C). Fathers in the standard care group who felt a delay in attachment until postdischarge when they felt more responsible for their infant (see Table 1, Quote 7D). Postdischarge, fathers from both groups reported continued anxiety over the health and well-being of their infant but overall they carried a positive view of their infant irrespective of their prematurity.

DISCUSSION

Fathers enrolled in AB FICare attributed their positive NICU experience to the effective communication, bedside attention, and education that they received about how to care for their preterm infants. Fathers in AB FICare articulated the attention and the teaching they received at the bedside and attributed that learning to the increase in confidence they gained with their preterm infants that continued postdischarge from the NICU. Fathers in AB FICare who wrote journal entries about their experience in the NICU corroborated these findings.

To our knowledge, the influence of any FICare model on the experiences of fathers in the NICU and postdischarge has not been previously reported. In our study, fathers routinely searched for their role, which is consistent with studies of fathers' experiences in the NICU, where fathers have been described as searching for their role separate from their partners.23–25 In a phenomenological study, Logan and Dormire26 described the NICU experiences of 7 fathers of infants born between 250/7 and 276/7 weeks' GA. Fathers described navigating the NICU as a foreign land that was woman/mother focused, found perseverance in working and staying strong for the family, described using holding to bond with their infant, and had renewed faith by fitting in as “a father of a preterm infant.”26 In our study, fathers described benefitting being involved; however, fathers in the intervention group specifically noted that their involvement in AB FICare enabled them to access more support and teaching from the bedside nurse, and additional resources, which lead to a positive experience.

Fathers described having negative experiences when they are given less independence with their child. This theme was supported by Russell et al,27 who conducted a qualitative analysis of 7 fathers of preterm infants, before 320/7 weeks' GA in South East England, who discussed the importance of being allowed to care for their infant including cleaning, diaper changing, touching, and holding. Parents in the current study described the negative feelings when they were not allowed to help with personal care for their infant versus the appreciation they felt when they were shown how to do tasks by staff or when they were allowed to be present during their occurrence. In a study of 111 German fathers of very low-birth-weight infants (<1500 g), fathers reported missing nonbedside interventions such as father-specific infant care courses, seminars, and chatrooms.9 Findings from the current study suggest that if fathers are involved in the care of their infants, it will lead to a more positive NICU experience.

Fathers expressed that the bonding they experienced with their child correlated directly to the relative amount of involvement they had with their child in the NICU. Scism and Cobb28 analyzed 28 studies in an integrative review of interventions that promoted father-infant bonding. Interventions that promoted bonding including opportunities for physical contact such as umbilical cord cutting, involvement during birth, and skin-to-skin contact were considered the most effective by fathers.28 In a study of 20 fathers interviewed regarding their feelings about skin-to-skin contact, overall they felt the experience was both gratifying and challenging.29 Fathers reported challenges with skin-to-skin contact when they were exhausted or in an uncomfortable position; however, it allowed them to feel more included.29 In this study, fathers in AB FICare were more likely to express that they felt bonded early with their infant, as they were physically more involved in the care of their infant early on.

AB FICare has the potential to influence the pre- and postdischarge experiences of fathers. A literature review of 50 studies that explored the phenomenon of transitioning home from hospital of parents of preterm infants before 370/7 weeks' GA identified themes that included: disruption of the parental role development, psychological consequences of preterm birth such as posttraumatic stress disorder, and learning caregiving and parenting.30 In the current study, fathers in both groups felt prepared to go home at discharge. However, fathers in AB FICare described more confidence and preparedness. They attributed this confidence to their involvement with their infant and to the teaching they received while in the NICU. They described the transition to home as being easy, as it continued to be more of the same routine but at home. Although fathers in the standard care group discussed feeling prepared to go home, they became more aware of the resulting shift in care when they transitioned to being full-time parents. AB FICare may be beneficial to fathers in easing the initial transition home, as they have become experienced with the demands of their baby.

There are several limitations to this study. AB FICare was directed at mothers, and fathers were involved through their partners. This did not disadvantage those whose partners were involved in AB FICare, as they described feeling more involved but also needing more independence and support that was specifically targeted to fathers. Other limitations include the limited ability to compare differences within a theme between the intervention and the standard care groups. A study looking at these 2 groups separately and quantitatively may provide a more in-depth look at the differences in experiences between them. Fathers who wrote journal entries spontaneously on their own accord may not reflect the characteristics of fathers as a whole. Data were not available to compare the characteristics of fathers who were interviewed and provided journal entries. However, their entries corroborated the findings of the interviewed fathers. Lastly, fathers in this study were ethnically homogeneous with high income, of similar marital status and number of children, and these findings may not be transferrable to all fathers of preterm infants. Future research focusing on the experiences of marginalized or economically disparate populations may yield better insight on how best to service these groups.

Future research should include designing and evaluating father-specific programs, from preadmission to postdischarge, directly aimed at decreasing stress and anxiety, increasing their involvement in the care of their infants, and increasing their communication with health professionals. Potential programs may include a designated support person during labor and delivery and through the initial NICU admission to help guide fathers through the process and facilitate their early involvement with their infants. The program should include a supportive environment that increases paternal involvement and independence when caring for their infants, and a post-NICU follow-up process to help fathers navigate the challenges of transition home.

CONCLUSION

Fathers of preterm infants born between 320/7 and 346/7 weeks' GA have a unique NICU experience that could benefit from the intentional attention and care that AB FICare provides. Throughout their stay in the NICU, fathers in the AB FICare group gained confidence in the care of their preterm infant when they felt supported, involved, and received adequate communication from the healthcare professional team. This positive experience had a “carry-over” effect postdischarge when parents were well prepared for discharge home. AB FICare has the potential to support fathers, enriching their NICU experience, and ultimately improving family outcomes.

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Keywords:

Family Integrated Care; fathers; neonatal intensive care unit; premature infant

Supplemental Digital Content

© 2022 The Authors. Published by Wolters Kluwer Health, Inc.