Study design

The present study employed a qualitative approach with an exploratory-descriptive design [34]. Studies of this nature are often regarded as sensitive. The present study was carefully planned and implemented to produce credible results [35]. The study was conducted at the Department of Child Health at the Korle-Bu Teaching Hospital (KBTH) in Accra, Ghana. The Department of Child Health runs speciality clinics, which include neonatal follow-up clinics, on Fridays when mothers of discharged preterm infants are expected to attend these clinics [36]. The department provides a critical setting for studying preterm infants and their mothers’ experiences due to its comprehensive neonatal care capabilities as a reference facility. Research indicates that preterm birth is a leading cause of neonatal mortality in Ghana, with significant rates of complications and deaths observed in the neonatal intensive care unit (NICU) at KBTH, where about 30% of preterm infants die before discharge [37]. Additionally, the hospital’s NICU provides a unique opportunity to explore maternal experiences, as studies have highlighted the psychological and emotional challenges faced by mothers of preterm infants, including financial burdens and the stress of uncertainty regarding their infants’ health [7,38]. Furthermore, the high incidence of neonatal hypothermia and other complications among low-birth-weight infants at KBTH underscores the need for targeted interventions and education, making it an ideal environment for research aimed at improving outcomes for this vulnerable population [39,40].

The study was conducted in 2021. As reported, it was a time when access to social and community resources was severely challenged, and most mothers were experiencing disruptions in mental health because of the challenges that were associated with the COVID-19 pandemic [37,41].

Participants

A purposive sampling technique was used to recruit 25 mothers for the study. The criteria were that they had delivered a preterm baby, been admitted and discharged from the Neonatal Intensive Care Unit (NICU) and attended a post-NICU clinic for review within the past 18 months. The timeframe was adequate for mothers to recall their experiences and the coping strategies they had employed to mitigate the adverse effects of their experiences [15].

Instrument for data collection

A semi-structured interview guide with open-ended questions was developed for the study. The guide was informed by literature, theories, and the researchers’ prior experience at the NICU and with families of preterm infants. The interview guide had sections on demographics, some experiences with preterm birth, coping with the baby at home and support systems available to the family. The interview guide was pre-tested with five Greater Accra Regional Hospital (GARH) mothers.

Data collection procedure

An introductory letter was sent to the Department of Child Health Unit (Neonatal Intensive Care Unit, NICU) to seek permission from the nursing officer and the matron in charge of the NICU clinic. The researchers then introduced themselves to the nurse who oversaw the NICU clinic, and she, in turn, introduced them to the parents with preterm infants. A general overview of the scope of the study was shared with the parents: Mothers who met the predefined inclusion criteria and showed a willingness to participate in the study were recruited with the help of the NICU clinic nurse after they had been informed about the purpose of the survey – consent to participate in the study was sought and signed when mothers agreed to participate.

Mothers who agreed to participate in the research were interviewed face-to-face before they went for their clinical sessions at a designated place at the KBTH hospital, which was assigned to the researchers. Interviews lasted, on average, for 30 minutes. The authors deemed the length of the interviews sufficient, as they were scheduled to accommodate the participants’ availability at the NICU. The setting for the interviews was considered suitable, as it was believed that the sights and sounds of the NICU would aid participants in recalling and effectively sharing their experiences related to the birth and care of their preterm infants.

The participants’ responses were recorded with an audio recorder with their permission.

Data analysis

Data collection and analysis were done simultaneously to arrive at saturation points in the participants’ responses. The themes identified in earlier interviews were explored in subsequent ones to validate participants’ narratives and probe further into cross-cutting issues that emerge from those narratives. The recorded interviews were transcribed verbatim and back-translated [34] to allow the researchers to analyse the actual, unadulterated responses of the participants – this helped to analyse the intensity and relevance of the issues emerging from the participants. The themes emerging from the data were categorised and re-categorised as the study progressed. Sub-themes were coded and grouped manually. Relevant themes and sub-themes have been presented in Table 1 below and supported with direct participant quotes in the presentation of the study findings.

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Table 1. Demographic characteristics of participants.

https://doi.org/10.1371/journal.pone.0317147.t001

Ethical statement

Ethical clearance was obtained from the University of Ghana’s College of Basic and Applied Sciences Review Board and the Korle Bu Teaching Hospital (KBTH) Institutional Review Board to ensure that the study protocols aligned with procedures for conducting and reporting research with human participants in Ghana (Protocol Number: KBTH-STC 00026/2021). The study was conducted per the Helsinki Declaration. All participants gave informed consent before and during the study. To ensure anonymity, codes (Pn) have been used in this article, where P refers to participants, and n refers to the number of participants. Furthermore, the data (including transcripts and participants’ metadata) was encrypted on a pen drive to ensure that only the researchers could access them. In line with international best practices, the data will be stored securely for fifteen years, after which it will be disposed of.

Research reflexivity and trustworthiness

Reflexivity and trustworthiness in qualitative research are essential for understanding the interplay between the researchers and the research process, particularly when utilising exclusive qualitative data. They involve continuous self-reflection on how researchers’ values, beliefs, and positionalities shape their interpretations and interactions with participants [42,43]. Reflexivity in qualitative research is essential for ensuring the rigour and trustworthiness of data collection and analysis. For instance, Flogen highlights the challenges researchers face in culturally sensitive environments, where ethical guidelines may conflict with local norms, emphasising the need for transparency in reflexivity [44]. Similarly, Jamie and Rathbone argue that integrating theoretical frameworks during data collection can enhance reflexivity, allowing researchers to navigate their multiple roles and biases effectively [45]. Nicmanis introduces reflexive content analysis as a method that incorporates reflexivity at each analytical stage, ensuring a nuanced understanding of qualitative data [46]. Furthermore, Peddle demonstrates how structured reflexive practices, such as repeated questionnaires, can foster self-awareness and enhance the quality of qualitative research [42]. These insights informed the researchers’ reflexivity in producing credible qualitative findings.

Within the current study context, the research team considered how their interactions with participants might be influenced by their professional backgrounds, experiences, and prior assumptions about preterm infants and their mothers. The researchers/ interviewers were academic researchers from non-clinical backgrounds. The first consideration was determining the participants’ willingness to participate in the study, and providing accurate information to the interview questions could be influenced by the researchers’ backgrounds. With this in mind, the information provided to the participants did not go beyond the researchers’ professional backgrounds. Second, the researchers were mindful not to dominate discussions during the interviews. Therefore, they adopted a backseat approach and allowed the participants to set the pace, hoping they would feel they were in control of their narratives and responses. Third, the notion of fair dealing [47] was considered to ensure that no particular participants’ views were represented as the sole truth about the mothers’ experiences. The data analysis consisted of reviewing all transcripts and constantly comparing them to identify similarities and differences without privileging one over the other. This led to the identification of common themes across cases. Fourth, the researchers considered the political and financial implications of their experiences and ensured that the interviews and questions probing did not focus on partisan politics and comparisons between political governments. At the end of each interview, researchers took time to ensure that participants were not distressed by their participation; in these interviews, none of the participants expressed such concerns or appeared distressed or uneasy. Finally, the researchers considered their roles in constructing the participants’ experiences with preterm infants. The research team met frequently to discuss and reflect on the data collection process and the coding of themes. Team members who were not directly involved in the interviewing process took turns reviewing the transcripts and determining whether or not the data was saturated. Two team members who had deeper insights into methodological issues in qualitative studies led the analysis and interpretation of the data.

Experiences during hospitalisation

It was found in the present study that most infants relied on life support machines for survival due to their underdeveloped respiratory systems. The infants labelled as high-risk newborns, especially the very preterm ones, were vulnerable to infections. They were, therefore, restricted to incubators with respiratory and nutritional support systems. The participants reported that seeing their children on this life support system stressed them so severely. A participant shared her experiences with the researcher by narrating a scene at the ward that left her traumatised for days:

I saw it with my eyes how a baby lying close to my [twin] kids died, and they wrapped him, and then the next day another baby died again…. I was going mad, [I said to myself repeatedly] what will happen to my infants? (P3, 31 years old, 31 weeks preterm babies, emphasis added).

These and other similar experiences faced by the participants were further exacerbated by the limited time they had to prepare adequately. Ten mothers expressed how the unexpected delivery disrupted their lives and livelihoods. According to the mothers, there were sudden disruptions in their day-to-day activities, for those engaged in the informal sector as petty traders had their significant sources of livelihood severed during the time they spent at the hospital and home after the babies were discharged. Having no regular money and means of generating income affected them economically and psychologically. A mother elucidated this further, stating:

I just woke up one Thursday feeling some pains, abdominal pains, thinking that it was normal pain, so I needed to see the doctor for medications. I just took paracetamol at home, and then, on Friday morning, the pains were still severe. I needed to come to the hospital. When they examined me, they said it was labour…? I had to call my family for them to bring my luggage and things because I was going to the labour ward… I did not feel happy because my time was not due (P3, 31 years, 31 weeks preterm baby).

For some of the participants, their expectation of giving birth and going back home with healthy babies within three days after delivery or a week if they went through a caesarean section was thwarted. The event’s suddenness made them feel “disorganised” (P16, 31 years, 30 weeks preterm baby). The traumatic experiences that the participants encountered were further amplified by the reactions of the doctors and family members when they delivered preterm babies. For some mothers, the traumatic experiences were further triggered by the responses of family members to the birth of the preterm child:

When I was even here, some [family members] told me to come home since the baby would not survive (P8, 37 years, 30 weeks preterm baby).

Experiences after hospitalisation

Another theme identified in the study was mothers’ post-NICU experiences. These were experiences of mothers caring for their preterm infants at home after they had been discharged from the intensive care unit. A key challenge for the mothers was having their children readmitted multiple times. According to some of the mothers, the preterm infants were vulnerable to infections due to their immature physiology, resulting in numerous readmissions at the clinic.

At three months, she ran a temperature, and the doctor said it was an infection, so she was admitted for one week” (P17, 38 years, 36 weeks preterm baby).

At first, she fell sick and was admitted to ER [Emergency Room], later she fell ill again and was admitted to Child Health…there was an infection” (P18, 32 years, 36 weeks preterm baby).

Beyond multiple readmissions, the mothers had to deal with the stigma that came with the size and physical appearance of the infant after she was discharged.

Our last born told me to go and throw the baby away because she was too tiny. I even lost hope” (P12, 36 years, 32 weeks preterm baby).

In Ghanaian cultures, infants were expected to look “fleshy and weighty” [52]. Having ‘tiny’ children made them feel worried and ashamed. Three of the mothers said they had to hide the children for six months before performing the naming ceremony.

We felt embarrassed to let people come and look at them, and they felt like we were telling them they were witches or something (P3, 31 years, 31 weeks).

When I was coming for review, I would wrap him tightly…I felt shy because I hadn’t given birth to a baby like that before (P13, 39 years, 32 weeks).

Because she was very tiny, we had the naming ceremony three weeks ago, and she is seven months old now (P12, 36 years, 32 weeks).

The thought of having tiny babies affected the mothers’ mental health as well. A participant shared how she was affected psychologically by her baby’s size:

When they are very tiny, sometimes you hold the baby, and when something falls off your hand, you presume that the baby has fallen because they are very tiny. Assuming my handkerchief falls, there is that kind of panic, thinking I have dropped the baby fall (14, 38 years, 28 weeks, emphasis added).

The experiences of the mothers were heightened by their inability to access adequate social support. Two of the mothers explained this further, stating:

I didn’t have anyone to help, so I suffered. I do everything by myself, especially when having bodily pains and needing to sleep, but the baby is crying; you must pick her up (P11, 35 years, 32 weeks).

My husband is often away from home, so I do house chores. Then, I must take care of her alone, which is stressful for me (18, 32 years, 36 weeks).

Previous studies (Eriksson, 2022) suggest that social support is critical to overcoming emotional stress. Thus, the mothers in the present study had increased stress because they received little or no support from relatives and friends other than their spouses.

It affects productivity because sometimes she cries. She wants to eat, so I must take her and feed her before I continue whatever I am doing – so it reduces my productivity at work (P18, 32 years, 36 weeks preterm).

For mothers who were in formal employment, their productivity was severely affected as a result. In some cases, they were compelled to take the babies to work because they were too young, tiny, and fragile to send to daycare, even if they could afford such a facility.

Stress coping strategies

Conclusion for practice

The study showed that mothers of preterm infants go through stressful situations as they attend postnatal clinics to care for their children. The study further demonstrates that preterm care can have far-reaching consequences for the mental health of mothers, their productivity at work and livelihoods, and the survival of the children they care for. However, having access to adequate healthcare resources in terms of information, medication, and experienced medical practitioners remains critical in minimising maternal stress. The findings of the study have broader implications for policy in maternal care and mental health in Ghana. First, the National Health Insurance Scheme and the Ghana Under-five Infant Health policies can be reviewed to allow mothers of preterm infants to access unlimited quality healthcare services at no cost – for at least the first six months after delivery. This will substantially reduce the financial burden on mothers while ensuring their mental health and general well-being are sustained. Second, institutionalising respectful maternal care (RMC) programmes in hospitals and clinics will help provide tailor-made resources to mothers and families during and after preterm delivery to minimise stress and safeguard their mental dignity. Third, continuous mass education systems on possible causes, prevention, and care for preterm children should be strengthened to address social stigma and garner communal and familial support for mothers caring for preterm children. Finally, a legislative instrument can allow fathers of preterm children to access up to three months of paid leave or flexible working conditions to support their spouses and preterm children adequately.