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

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.

OPEN IN VIEWER

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.

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).

OPEN IN VIEWER

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?

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.

OPEN IN VIEWER

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

Demographic information of the mothers’ premature infant was also obtained (see Table 4).

OPEN IN VIEWER

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

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.

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.

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.

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.