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The British Journal of Occupational Therapy logoLink to The British Journal of Occupational Therapy
. 2022 May 16;85(11):910–917. doi: 10.1177/03080226221097302

What is the lived experience of mothers in a Level-IV neonatal intensive care unit?

Jennifer L Nelson 1,✉, Kristin Winston 2, Elise Bloch 3, Jenene Woods Craig 4
PMCID: PMC12033813  PMID: 40337149

Abstract

Rationale

Occupation-based practice in the neonatal intensive care unit may be impacted by a plethora of contextual factors. There is limited literature of the lived experience mothers have with mothering occupations for the care of premature infants in a Level-IV neonatal intensive care unit.

Methodology

A phenomenological design was used to interview mothers of premature infants in a Level-IV neonatal intensive care unit. The eight participants were mothers who had been in the neonatal intensive care unit for at least 1 month. Data was obtained via demographic form, two individual semi-structured interviews for each mother, and fieldnotes.

Results

Thematic analysis yielded five themes and two subthemes which were: unanticipated journey to becoming a mother, emotional rollercoaster, mother’s lost voice, subtheme cultural influences, roadblocks to mothering, unexpected layer to mothering occupations and subtheme support for mothering occupations. Each theme described a mother’s experience with mothering.

Conclusion

There is an importance for neonatal occupational therapists to provide support for mothering occupations for mothers from a variety of demographic and cultural backgrounds. Occupation-based practice in the neonatal intensive care unit continues to need attention for inclusion of all mothers. The findings showed that cultural humility should be practiced in family-centred care in the neonatal intensive care unit.

Keywords: cultural humility, mothering, neonatal intensive care unit, occupation-based practice, premature infants

Introduction

Per the World Health Organization (WHO), premature birth is a global crisis (Chawanpaiboon et al., 2019) and maternal characteristics such as race, socioeconomic status and age are high-risk factors for a preterm delivery (Centers for Disease Control, 2020). The long-term implications of prematurity on an infant’s neurodevelopment have been studied (Centers for Disease Control, 2020; Chawanpaiboon et al., 2019), however, literature on the impact to mothering as an occupation-based practice in the neonatal intensive care unit (NICU) is limited. ‘Mothering’ can be viewed through the sociocultural lens as mother’s work that is influenced by culture, community and socioeconomic status (Esdaile et al., 2004). Mothering occupations include activities that involve nurturing and caring for children (Francis-Connolly, 2009). As a woman visualizes becoming a mother and doing mothering occupations, rarely to do they envision navigating a medically driven environment (Holditch-Davis et al., 2011). The environment of the NICU is designed to present life-saving interventions that result in mothers feeling as though their role is lost to medical staff (Miles et al., 2011). Prolonged hospitalizations are a direct result of premature infants being resuscitated at earlier gestational ages (Pineda et al., 2018), which place an undue hardship on mothers. While family-centred care (FCC) has become the gold standard in the NICU, encouraging a mother to constantly be at the bedside can sometimes be overwhelming (Pineda et al., 2018) . Therefore, the NICU may be perceived as a tremendous hurdle by women in learning how to become mothers to their premature infants (Gibbs et al., 2016).

Authors have discussed barriers to implementing FCC in NICUs (Craig et al., 2015) and the need for more research focused on occupation-based practice in NICU (Gibbs et al., 2016) such as mothering. Therefore, the purpose of this phenomenological study was to explore the lived experience of mothers of premature infants in a Level-IV NICU.

Methods

This qualitative, phenomenological study was conducted in a large paediatric hospital located in an urban, metropolitan city in the south-eastern United States. The paediatric hospital has a Level-IV surgical NICU with 49 beds. The main objective of using qualitative methods for research is to understand an individual’s experience and their personal meaning of the experience (Creswell, 2013). Phenomenology has been described as an approach within qualitative methods to explore an individual’s lived experience of a particular phenomenon (Richards and Morse, 2013). The authors obtained institutional review board (IRB) approval from the paediatric hospital prior to initiating the study.

Mothers of premature infants were recruited by purposeful sampling from the neonatal therapy staff’s caseload. The primary investigator who is a certified neonatal therapist in the Level-IV NICU obtained informed consent from each mother prior to the initial interview. A pseudonym was assigned to ensure confidentiality. Mothers who were English-speaking and who identified as the primary caregiver of premature infants born less than 37 weeks’ gestation were included. Mothers were recruited after 1 month of admission to the NICU to capture experience over a prolonged hospitalisation. Interviews which lasted approximately 60–90 minutes on two separate occasions, 2 weeks apart were conducted. The interviews occurred in a private conference room located within the NICU. Mothers were excluded if they did not speak English, if their premature infant was discharged prior to 1 month of hospitalisation, they could not participate in two separate interviews, and they could not attend a face-to-face interview. Given the impact of COVID-19 in 2020 during the recruitment and data collection period, the paediatric hospital deployed new policies around visitation and infection control measures; therefore, eight mothers were the targeted sample size.

Data collection included demographic information, digital audio recordings and field notes. Prior to the obtaining informed consent and conducting interviews, critical reflection was performed in the form of bracketing to reduce any bias as the primary investigator was a member of the neonatal therapy staff. Bracketing is an important process during data collection and data analysis as it allows the investigator to reflect on ideas and postulations about the phenomenon being explored (Stanley and Nayar, 2014). Interview questions were open-ended (see Table 1), developed with guidance from a review of the literature (Gibbs et al., 2015; Reynolds et al., 2013; Pineda et al., 2018; Spinelli et al., 2016), and reviewed by experts in the field of mothering, NICU and FCC.

Table 1.

Initial interview questions.
1. Tell me about your pregnancy and delivery experience.
2. What were your initial thoughts when you learned your baby would be admitted to a NICU?
3. Tell me about your experience of having a premature infant admitted to the NICU.
4. Tell me about a typical day for you and your baby in the NICU.
5. Describe your experience with caring for your premature infant while in the NICU.
6. Tell me about what the medical staff has done to prepare you for caring for your baby.
7. Tell me about how the NICU and hospital environment has supported or hindered your ability to care for your baby.
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Mothers were asked to participate in a second interview 2 weeks following the initial interview. This allowed more in-depth data to be collected (Frank and Polkinghorne, 2010) and allowed the mother to reflect on their experience. During the follow up second interview, the primary investigator used open-ended questions and probing questions (see Table 2).

Table 2.

Follow-up interview questions.
1. Is there anything you would like to further discuss regarding your experience of having a premature infant in the NICU now that you have had some time to think since your first interview?
2. Describe your experience of working with therapy services, such as occupational therapy and/or physical therapy.
3. What piece of advice would you give other mothers new to the NICU?
4. Is there anything you would like to share with me that we haven’t discussed?
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Field notes were taken to document any observations, body language and nonverbal communication. The digital audiotapes and field notes were transcribed. Initial coding was completed by the primary investigator using a by hand, colour-coding system. All similar notations were identified by being colour-coded, grouped together by categories and analysed for the development of overall themes. Thematic analysis occurs when the data are highlighted, and prospective themes are notated in the margins of the document (Cohen et al., 2000). To enhance rigour, audit trails of the codes and themes and peer debriefing were completed by three additional qualitative researchers who provided feedback to the thematic analysis process. To further ensure trustworthiness and integrity, member checking was conducted by giving the mothers a transcript of their interviews, the overall themes and subthemes, and they validated their experience. Exemplar quotes were used in the narrative report.

Results

In this phenomenological study, there were eight mothers who had premature infants admitted to the NICU for at least 1 month. Demographic information was obtained prior to the initial interview (see Table 3) which revealed the mothers were from diverse backgrounds.

Table 3.

Demographics of mothers.

Mother Age Race Education level Employment status Number of children Distance from hospital
Marsha 39 Black Associate Part-time 6 28 miles
Emily 36 White Some college Stay-at-home mom 4 65 miles
Rebecca 19 White GED Unemployed 1 46 miles
Erica 35 Black Bachelor’s Fulltime 1 30 miles
Crystal 28 Black Associate Current student 2 25 miles
Amy 27 Black Bachelor’s Fulltime 1 28 miles
Michelle 31 Black Bachelor’s Fulltime 1 30 miles
Kristina 33 Black Associate Fulltime 1 62 miles
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Demographic information of the mothers’ premature infant was also obtained (see Table 4).

Table 4.

Demographics of mothers’ premature infants.

Mother Therapy services Infant’s gestational age Length of stay
Marsha OT 31 weeks 1 month, 14 days
Emily OT 35 weeks 1 month, 19 days
Rebecca PT, ST 30 weeks 2 months
Erica OT, PT, ST 32 weeks 4 months
Crystal OT, ST 23 weeks 4 days 2 months
Amy OT 25 weeks 2 months
Michelle PT 26 weeks 2 days 1 month, 14 days
Kristina OT, PT, ST 25 weeks 1 day 2 months, 27 days
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Prematurity was not the sole reason for being admitted to the NICU as all the premature infants required surgical interventions due to their co-morbidities. Co-morbidities included: genetic syndromes, cardiac disease, lung disease, neurological diagnoses and gastrointestinal diseases. The premature infants received neonatal therapy services which included occupational therapy (OT), physical therapy (PT) and speech therapy (ST) in isolation or combined.

There were five overall themes and two subthemes that became evident during thematic analysis. The themes are (1) unanticipated journey to becoming a mother, (2) emotional rollercoaster, (3) mother’s lost voice with subtheme cultural influences, (4) roadblocks to mothering and (5) unexpected layer to mothering occupations with subtheme support for mothering occupations.

Unanticipated journey to becoming a mother

This theme was prevalent throughout each mother’s recount of becoming a mother. From the beginning of their pregnancies, many of the mothers were under the care of a high-risk specialist. This was evident in the following exemplar quote from Amy:

‘So, I felt sick for most of my pregnancy between nausea and fatigue. And just my high blood pressure was really the main issue of my pregnancy. And I ended being high risk for it and I went to the doctor like every week, sometimes twice a week. And so around 24 weeks is when my blood pressure really got high…But the high-risk specialist, she told me that she really didn't feel comfortable leaving him in for much longer because it could eventually lead to a stillbirth’.

Although the journey to becoming a mother differed slightly between each of the mothers, commonalities emerged when recalling their experience. The most evident was the unexpected turn from the envisioned pregnancy and delivery path. This was evident from Michelle:

‘And my daughter was born still less than one pound at the time. I can't remember exactly where she was…I think that's where she was, 380 grams. I think they were preparing for the worse, which is she wouldn't make any sounds, she wouldn't make any movements. But my daughter actually came out kicking and screaming, which was really funny. And she's still kicking and screaming to this day’.

Emotional rollercoaster

The second theme which emerged throughout each interview was emotional rollercoaster. The mothers frequently spoke about being afraid and concerned for their premature infants with tears in their eyes. These feelings were stated by Rebecca:

‘I was confused and shocked because I didn't even have time to process anything that was going on. I was just very upset. I think I'll always be a little nervous and have that fear because you never know with especially premature babies, you never know what they're going to do…. But from him being three months and hitting his third surgery Monday, you just you never know what's going to happen. And my concerns are like, how is this going to affect his future and stuff like that?’

While many of the mothers had large support systems and significant others to lean on in time of need, some mothers either did not have a lot of support or began to feel isolated and alone. Amy discussed her feelings:

‘I just feel very isolated and lonely. You know. And I was telling my mom that I was like even those people around me, I just feel so alone. And then my son’s father, who I haven’t even heard from in so long, but I honestly didn’t want him there because it’s just it wasn’t consistent, you know’.

The mothers also portrayed happiness when discussing their experience of having a premature infant. Marsha sums up how proud she was of her son:

‘And when I get those good news, I’m like “Yay,” I am cheering him on, I’m one of your biggest cheerleaders’.

Mother’s lost voice

The third theme to emerge was mother’s lost voice. Mothers reported they felt unheard during their prenatal care and their infant’s care. Mothers revealed the importance of medical staff using layman terms and simplifying the information to ensure understanding of the care their premature infant was receiving. The mothers often spoke of ways they dealt with feelings of being an outsider and feeling like their concerns were ignored by the medical staff. Many of the coping strategies that were reported included: writing unknown words down to Google later, continuing to advocate for their baby and reporting their concerns to leadership staff at the hospital. Michelle discussed her experience:

‘…And I knew something was wrong…One of the ways I felt about it was, you're trying to put accountability on me. And as her parent, I've asked not one, not two, not three, four times. I've done my job. I'm advocating… I'm upset because this is my fourth time. And I think people took that as it's your fault. No, let me tell you this, I'm not that type of woman. It's not my fault. I know I'm doing the right thing. Where I feel disheartened is, you know, there is this. It's fact. It's fact that Black women don't get heard in the medical industry… But four times, it is always gonna be a constant struggle’.

The mothers were unsure which questions to ask regarding mothering in the medical setting, which was evident by Amy’s account:

‘So, I didn't see him until the NICU people had gotten him situated. And they wheeled him around up there a little bit. And I looked up because I could barely see him, but because he was in, you know, the little what is it, the incubator…And it was also discouraging, like, am I ever gonna be able to hold him and make some type of connection other than, you know, looking down on him and talking to him, you know, wearing the cloth and bringing it back and switching it out? It kind of made me sad because I'm just like, at what point am I going to really be able to develop a relationship with my son, you know? And when you're new to this, it's just like you don't know what questions to ask or any of that’.

Moreover, the mothers’ past experiences in the medical community during the prenatal period may have impacted their trust and confidence in the NICU which is highlighted by Crystal:

‘One, I was going to a high-risk doctor. I never seen a doctor until my last appointment and that was because I questioned why when I come to the doctor, I don't see a doctor I only see an ultrasound tech. And when I was at that appointment, the ultrasound tech had told the doctor or something about the ultrasound and that she wanted to do a vaginal ultrasound and she stated, “well, we could just wait till the next visit.”… I guess the ultrasound tech saw something, but the doctor didn't do anything. Then a week later, I started bleeding and went into labour’.

Cultural influences

The impact of the mother’s lost voice led to the development of the subtheme, cultural influences. When asked about the culture of the NICU, one mother was able to discuss a time when she felt the medical staff was being racist. Michelle highlights how she felt when engaging in conversation with a respiratory therapist and a nurse in the NICU:

‘I had two nurses, one respiratory, one regular nurse say they found out that I was a flight attendant. And they asked me, do I have any issues with people trying to sneak in? And I said, no, no. Actually, my response to be funny was, oh, you mean from Europe. Right. Because I knew what they meant. And she's like, “No, no, you know. You know what I mean?”… I think would qualify as a racist moment. And I kind of just was floored because I was like, that's a terrible thing to say, you know?’

Another way cultural differences became evident occurred when mothers were receiving information from medical staff. Many of the mothers felt as though they did not understand some of the language that was being used in the NICU. Crystal stated:

‘Just maybe as far as language, I couldn't understand some of it for his care. Because at first, I was losing patience, like when they had to give him the paralytic, I wasn't understanding why, I thought it was a bad thing. But it actually was a good thing because they were putting his body to rest and letting the ventilator work for him…’

The mothers openly shared their insights on how the NICU culture, and the culture of the staff not only differed from themselves but impacted their ability to mother their premature infant. These differences left them feeling unsupported which is evident in Michelle’s quote:

‘What I what I feel more now, too, is more exhausted. You know, I have a lot on my plate. You know, my job is unstable in the airline. It’s COVID times. I have a child in the NICU now. She’s in your care 24 hours. And I’m only here 8 hours of the day. You know, if that. And now you’ve made it to where I feel like I need to be here 24 hours … They didn’t respect what I was saying when I kept saying there’s something wrong with the wrist and it kept being dismissed by each person. So now I feel less empowered. I feel like I can’t trust people here. And that is a disheartening feeling’.

Roadblocks to mothering

The fourth theme highlighted barriers to mothering. Whether it was due to the distance from the hospital, family responsibilities, return to work, visitation restrictions due to COVID-19, lack of space by the bedspace or unprofessional behaviour of staff, the mothers stated this impacted their ability to mother. Marsha shared how return to work affected her:

‘It's kind of a lot more to me is a lot more difficult, not just because of going back to work, but also because of that virus that's going around. So, in my mind, I work around a lot of people… I'm a supervisor at UPS. I haven't had a bad day until yesterday when I went back to work because now you have to focus on what's going on at work…Like, I don't think I'm ready for this because I was at the point last night was like I think I'm just gonna go ahead and take additional leave because I'm not ready’.

Distance from the hospital affected some of the mothers. Rebecca’s example highlights this:

‘I try to come every day, maybe once or twice a week…I can't always make it, but usually I try to make it every day, at least for a couple hours in the morning. It is a good drive. And you're having to fill up a car like just about every day, every other day just to come…’

There were barriers due to the social situations of the mothers, the NICU environment, and the medical staff which is highlighted by Rebecca:

‘And I've never went through that before because everybody has been amazing here. And it caught me off guard… And it's just that one nurse basically kind of being a little possessive over him. You need to back up a little bit. And I addressed it as soon as it happened as soon as the rude comment came out. I addressed it, and I got that figured out. No one ever like oversteps or tells me I'm a bad mom. But that's how I felt when that nurse made those comments. Like, I've already beat myself off over this because I can't take him home. I can't change anything that I did. And that really hit me hard. And it took me a while to get over it’.

Unexpected layer to mothering occupations

This fifth theme became prominent in the mothers’ account of their experiences of performing mothering occupations in the NICU. Layers to mothering occupations in the NICU that were unforeseen included how premature infants require adaptations to mothering occupations for optimal neurodevelopmental outcomes. This is apparent from Amy’s experience:

‘I mean, the therapists that I've met have been helpful and teach me ways to comfort him when his nurses are doing like hands-on care. So, I would say it's a positive experience. So, kind of like, I guess, doing the hand on the head and hand on the feet to kind of…To remind him of being in the womb and helping them to calm down? Because from what I've been told by his nurses and therapists, is that he doesn't really like being touched. It's kind of like overstimulation for him. So, to be able to do that and talk to him while I do it is really good’.

There were suggestions for improvement which emphasized the ability of the mothers to advocate not only for themselves but for future mothers in the NICU. Notable was the impact that COVID-19 had on visitation and the suggestion to have webcams at the bedspace as indicated by Emily:

‘I've already suggested this before, was the live cameras from 9:30 in the morning till 11:30 a.m. and then 9:30 p.m. to 11:00 p.m. because of COVID, especially. But to keep germs down, too. They have the cameras on the babies so you can just watch your baby…So, like grandparents or people that live out of town that couldn't, you can give them that code and go on and watch your baby. That was my biggest suggestion for here, because it's just a comfort for when you can't be there or when family can't be here to meet or see her’.

Support for mothering occupations

A subtheme that evolved from the theme unexpected layer to mothering occupations was support for mothering occupations. The need for support from the NICU staff for performing mothering occupations at the bedside was an unanticipated aspect of becoming a mother. This was evident from Emily’s report:

‘The nurses are worried about you doing as much hands on as you want, changing the diapers, giving the baths, changing her clothes, taking her temperature. Just anything that you want to do, they'll allow you to do…So just how handling her with the respiratory things and then, showing how to change lines for her g-tube and her feedings’.

Consistency had a significant role in the medical care of each mothers’ premature infant. The mothers discussed how having consistent medical providers benefited their infants. Michelle discussed the importance of support from NICU staff:

‘It’s nice because you know, their flow of things, you know. You know what they’re comfortable with, seeing a familiar face. I think it benefits my daughter. You know, one less person she doesn’t know touching her. She loves her primary nurse…You know, our primary nurse has her and I know that she takes care of her and I know how she works. I know she’s attentive…’

Discussion

The purpose of this qualitative study was to explore mothers’ experience with mothering premature infants in a Level-IV NICU. The first theme was unanticipated journey to becoming a mother. Each mother’s journey included high-risk specialists, increased number of doctors’ appointments, and early admission to the hospital due to their own medical needs which is also highlighted in the literature on health disparities of mothers of premature infants (Glazer et al., 2021). Once the mothers had delivered their premature infants, the medical and surgical interventions required for the infants’ survival were unanticipated events. This finding is reflected in the literature of mothers who experience care for medically complex infants in the NICU (Pineda et al., 2018) and are from diverse ethnic and cultural backgrounds (Horbar et al., 2019; Profit et al., 2017). OTs who recognize the social and economic barriers that affect the lives of mothers of premature infants in a Level-IV NICU may be able to provide care that is more relevant and individualised. Partnering with families and listening to their perspectives on how to improve care within the NICU may lead to better outcomes for families, their infants and care providers.

The second theme to emerge in the data analysis was emotional rollercoaster. Many of the mothers reported limited opportunities to engage in mothering occupations with their premature infant. This was often reported with feelings of sadness or fear. However, when discussing holding their baby for the first time, the mothers reported to have a greater sense of wellbeing. Emotional fluctuations have been previously reported in the literature (Spinelli et al., 2016), this study further confirms this experience for mothers of premature infants. OTs who promote mother-infant activities that focus on a mutual physical, emotional and intentional interaction (Price and Miner, 2009) ensure occupational wellbeing and engagement. During the interviews, the mothers reported feeling a greater sense of wellbeing which was directly influenced by their ability to engage in mothering occupations. Improved wellbeing and engagement have been discussed in the literature to improve long-term outcomes for not only the infant (Pineda et al., 2018) but also the mother (Gibbs et al., 2016).

The third theme identified was mother’s lost voice. Despite extensive research and recommendations for the inclusion of families in all aspects of care (Coughlin et al., 2009; Altimier and Phillips, 2013; Frampton et al., 2017), NICU medical care continues to lack full inclusion of families due to the NICU culture and the behaviours of NICU staff (Craig et al., 2015). The lack of full inclusion of the families results in occupational deprivation. Occupational deprivation is described as any situation that prevents, eliminates or suppresses occupational engagement (Wilcock and Hocking, 2015). The mothers discussed feelings of not being heard, which often resulted in their inability to perform mothering occupations. The limited opportunities for mothering may have resulted in occupational deprivation, occupational imbalance and feelings of decreased wellbeing. OTs have the opportunity to ensure each mother’s culture and past experience in the medical setting are considered when implementing care plans to ensure occupational engagement. The mothers alluded to the fact that their own medical concerns were not taken seriously by their doctors during prenatal appointments, which was especially true with the Black mothers in the study. Therefore, the theme of mother’s lost voice is supported in the literature as inequalities in health care are a direct result of health disparities in minorities, social racism and economic injustices (Horbar et al., 2019). Furthermore, OTs have the ability to explore the needs of mothers to ensure their active engagement in FCC (Mirlashari et al., 2019) by facilitating mothering at the bedside which can improve occupational engagement (Gibbs et al., 2015).

The subtheme to mother’s lost voice was cultural influences. A Level-IV NICU in an urban setting includes families from a variety of cultural backgrounds, socioeconomic statuses and educational levels. In a study examining culturally competent care in the NICU (Nicholas et al., 2014), the authors discussed poor communication which left parents feeling disconnected. The mothers in this study revealed feelings of implicit bias, misunderstandings and a breakdown in communication between themselves and the NICU staff. Hence, medical staff in the NICU have the opportunity to be aware of the influence that culture, community and socioeconomic status has on mothering (Esdaile et al., 2004; Arendell, 2000; Collins, 1994). The mothers in this study reported their awareness of the language differences, possible age discrimination and racial comments that were made by staff. This finding is supported by a study which looked at the importance of considering the needs of families when providing care in a NICU especially when there are demographic differences between the family and the medical staff (Mundy, 2010). Therefore, with a greater understanding of the impact of cultural humility (Agner, 2020), OTs could lead the way in improving the care that mothers from diverse demographic backgrounds receive in the NICU which may lead to improved satisfaction of care. Providing education and training to all medical staff on cultural humility could be a focus of OT as part of the multidisciplinary team.

The fourth theme was roadblocks to mothering. The mothers in this study reported many instances where there were obstacles to mothering. Due to the medical status of the premature infant, nurses often assume the doing of care which leaves the mothers feeling as if they have no role in the care for their infant (Craig et al., 2015). The medical complexity of the premature infant coupled with the highly technical medical environment causes a hindrance to mother-infant bonding (Spinelli et al., 2016). Bonding is imperative for long lasting emotional connections with the infant (Spinelli et al., 2016) and improves maternal competence for performing mothering occupations. In addition, COVID-19 affected visitation at the hospital, which prohibited more than one visitor at the bedside and limited hospital led support group gatherings, which left mothers feeling alone. Authors have recognised that lack of visitation due to COVID-19 has potential for negative long-term consequences for premature infant development and maternal bonding (Tscherning et al., 2020). Therefore, OTs have a role in supporting policy changes (Greenfield and Klawetter, 2016) at the hospital level (Mirlashari et al., 2019) to enhance mothering in the NICU and improve opportunities for visitation during a pandemic (Tscherning et al., 2020).

The fifth theme was unexpected layer to mothering occupations. An important aspect to mothering occupations in the NICU is learning how to adapt caregiving activities. Mothering is often viewed as caregiving activities for infants and children that consist of bathing, feeding and dressing (Sethi, 2019). OTs who provide occupation-based interventions in the NICU have the ability to improve mothering. Furthermore, OTs have the opportunity to improve an emotional connection between the mother and her premature infant (Pineda et al., 2019) by facilitating mothering occupations. Another aspect of mothering that was evident in the mother’s account of becoming a mother to a premature infant was that of advocacy. OTs may serve as the facilitator to strengthening FCC by highlighting the importance of cultural humility to individualise care for each family unit.

The subtheme to unexpected layer to mothering occupations was support for mothering occupations. In alignment with Gibbs et al. (2016), the mothers reported having nursing staff as a mentor was an important factor with mothering occupations in the NICU. Mothers discussed the importance of having consistent nursing staff but also neonatal therapy staff and physicians. OTs could create an educational and training program for mothers in the NICU that focuses on how to perform mothering occupations in the medically complex environment (Pineda et al., 2019). Focussing on mothering occupations may also improve the transition to home as mothers feel more confident and capable of providing care to their premature infant (Spinelli et al., 2016).

Strengths of this study include data collection methods allowed for rich data to be obtained, the mothers had a premature infant in the NICU for a prolonged admission, and the research design allowed more in-depth narrative and insight. The in-depth exploration of the lived experience of mothers is reflected other studies (Gibbs et al., 2015); however, a strength of this study is the experience of Black mothers, a young mother and an older mother. Future research could provide insight into occupation-based interventions in the NICU, the impact of health disparities for the care of medically fragile premature infant in the NICU, and cultural humility in FCC. Future research regarding the experience of fathers in the NICU, paternal occupations and inclusion of non-English speaking families must be considered. The development of occupational therapy theory and models of care would be of benefit for the neonatal occupational therapist in the NICU.

Limitations

Limitations for this study include a small sample size, mothers from one paediatric hospital and the impact of COVID-19 on the data collection process. Limitations included the exclusion of fathers, paternal occupations in the NICU and only English-speaking participants were included.

Conclusion

This qualitative study highlights the importance of full inclusion of all mothers into the care of their premature infant despite their demographic and cultural backgrounds. Mothering occupations and occupation-based practice continue to be of upmost importance in the NICU. The findings illustrated how cultural humility and sensitivity require attention and focus within FCC in the NICU.

Key findings

  • • Mothering occupations are vital for the care of premature infants in the NICU.

  • • Occupational therapists can improve family-centred care by focussing on cultural humility and sensitivity.

What this study adds

Occupational therapists play a paramount role in ensuring mothers from diverse cultures engage in mothering occupations for the health and wellbeing of themselves and their premature infant in the NICU.

Acknowledgements

We gratefully acknowledge the mothers for their interest and openness to share their experiences of mothering their premature infants in a Level IV NICU.

Footnotes

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical approval: Institutional Review Board at Children’s Healthcare of Atlanta was obtained and approved in February of 2020, #00000491.

ORCID iD

Jennifer L Nelson https://orcid.org/0000-0003-2686-0001

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