Recent figures on Brunei’s infant mortality rate has indicated an increase whereby the percentage of neonatal deaths was reportedly caused by perinatal conditions and congenital abnormalities (Ministry of Health Brunei Darussalam, 2017). Babies with such conditions usually require an extended stay in NICU (AlJohani et al., 2020). Thus, parents of the patient in the NICU find themselves in an emotional strain. Hence, the NICU nurses need to provide support. However, a NICU setting can be challenging in providing parental support.
Interpersonal relationship with the parents is one of the challenges frequently mentioned in the literature that became a barrier for nurses providing support to NICU parents. Many ethical controversies in NICU result from communication problems between parents and healthcare professionals (Janvier et al., 2014). NICU nurses expressed that interaction with the patient’s parents is challenging as parents are new to the situation (Strandås & Fredriksen, 2015). The stressful workload can lead to miscommunication between nurses, colleagues, and parents, resulting in unnecessary conflict and disagreement (Strandås & Fredriksen, 2015). Work overload limits the time for nurses to interact with parents (Mirlashari et al., 2020). One of the critical problems is the lack of appropriate interactions with parents, such as giving information (Kadivar et al., 2015). Therefore, special attention needs to be given to interact with parents because communication is crucial in supporting the NICU parents (Hall et al., 2015; Kadivar et al., 2015). The nurses also find it challenging to balance caring for their critically ill patients and parental support. They need to prioritise caring for the patient in an acute situation (Strandås & Fredriksen, 2015). It was a challenge when duty had similar importance with nurse-parent communication (Kadivar et al., 2015).
There are also essential treatment procedures in which sometimes nurses have to limit parental involvement. This restriction can increase parents’ stress levels and affect nursing care satisfaction (De Bernardo et al., 2017). It can also lead to psychological distress to the parents (Purdy et al., 2015). Parents verbalised disagreements with nurses when they were unable to understand the aspect of care. This is when the nurse has to decide when and how to accommodate the parents’ emotional state and meet the patients’ needs (Strandås & Fredriksen, 2015). A study reported that parents with primary education have fewer demands and lower expectations, and have high satisfaction towards the nursing care NICU (Tsironi et al., 2012). Furthermore, nurses have to balance the bonding and separation between the baby and their parents because it was proven that it could improve their mood. Bonding events include being present at the bedside, physical contact and interacting with the baby, and caring for their child. In contrast, separation events are when the parents are not physically present at the bedside, not interacting with their child, not involved in caring for the baby, and so on (Feeley et al., 2016).
Meanwhile, care continuity in nursing can give parents a sense of security (Hagen et al., 2019). However, this cannot be easy to maintain when many different nurses and professionals are involved in the treatment. They possess different professional judgments, opinions, and ethical values, which can cause confusion among parents and raising their concern for their child’s well-being when the interprofessional team cannot reach a consensus (Dunn et al., 2018). This work atmosphere can reduce encouragement in moral knowledge and ethical sensitivities (Kadivar et al., 2015). In addition, parents have reported that there are organisational problems which comprehend on lack of care continuity between staff, inadequate collaboration with other healthcare disciplinary team, absence in a nurse who is taking care of the parents only, difference in attitudes from nurses and poor information giving during handover report to next shift resulting in impaired communication between nurses and parents (Kadivar et al., 2015). So far, the literature primarily focuses on general challenges experienced by nurses working in NICU, with the study mainly conducted quantitatively. Therefore, this study aimed to explore nurses’ views on the nature of parental support provided in NICU settings in Brunei Darussalam.
A qualitative descriptive study design was undertaken as it was the most appropriate in addressing the research questions. It allows Bruneian nurses’ voices to be heard, providing a unique chance to examine the nature of nurses’ support for parents in the NICU setting.
The research participants were recruited using a purposive sampling strategy. The eligible criteria include participants who have at least one year of working experience as registered NICU nurses of RIPAS Hospital and can understand and converse in Malay or English. RIPAS Hospital was chosen as the setting and recruitment centre for this study because most critically ill neonates are referred here for intensive care in Brunei. The nurses were recruited through the gatekeeper, authorised as the middle person between researchers and potential participants. A printed participants’ recruitment sheet with information about the study was given to 17 nurses attending the recruitment. Unfortunately, only ten agreed to participate. The participants’ average work experience was between 6 to 20 years of service.
This study was conducted in Brunei Darussalam between October 2020 and January 2021. The research team conducted individual interviews, whereby a pilot interview session was first conducted with one of the study participants with no significant interview guide changes. The individual interviews were held in a private room within the hospital premises and lasted an average of 57 minutes. Data were collected from October 2020 to January 2021. The data were collected with an interview guide containing six semi-structured and open-ended questions to guide the researcher to focus on the theme. All researchers collected all data. The following open-ended questions were presented in Malay and English: what do you understand with the term providing parental support. Follow-up questions were asked about their educational background related to that aspect, experience and the challenges in providing parental support in NICU. Field notes were taken throughout the interview to ensure a general understanding of what had been shared and prevent any bias on the data collected. The interviews were audio-recorded with consent and were then transcribed verbatim. A calm atmosphere was maintained to encourage the participants to describe their experiences in as much detail as possible.
All interviews were transcribed verbatim and analysed using six phases of the thematic process described by Braun and Clarke (2021). The first phase involved the research team reading and re-reading to become familiar with its content. In contrast, the second phase entailed coding the transcripts and collating all relevant data extracts for further stages of analysis. The third phase prompted the research team to examine the codes and collected data to establish meaningful broader patterns of potential themes. Phase four involved comparing the themes to the transcripts to ensure they presented a credible story about the data and answered the research question. The fifth phase involved doing a detailed analysis of each theme and defining its scope and focus. Finally, in phase six, the research team combined the analytic narrative and data extracts and contextualised the results in the existing literature. It is critical to highlight that all phases were followed recursively, whereby we moved back and forth between phases. These phases were viewed as a roadmap for analysis, facilitating a complete and in-depth engagement with the data analysis. English words or phrases were used when translating from Malay to English since the source words have an English translation. There were no complicated words or phrases to translate or interpret.
The four aspects of qualitative research’s trustworthiness are credibility, dependability, conformability, and transferability (Polit & Beck, 2018). All of these aspects have been established in this study. All interviews started with warm-up questions about their views of providing parental supports in the NICU setting. This set of questions ensured that the participants shared a similar understanding of the nature of parental supports with the researchers. All the audio recordings were transcribed verbatim to retain the data analysis and objectivity quality.
Meanwhile, quotes from the participants are presented in the findings for conformability. For credibility, the analysis process was finalised in collaboration with all the researchers. The data was saturated during the eighth interview, but two more individual interviews were carried out to ensure no more information emerged. The participants’ age range and level of experience were broad, contributing to the findings’ transferability.
Permission to recruit, interview and collect data from participants was obtained with full approval from the Joint Committee of the Institute of Health Sciences Research Ethics Committee and Medical and Health Research Ethics Committee (Reference: UBD/PAPRSBIHSREC/2020/78). All participants were given the information sheet on the research study. Participation in the research study is entirely voluntary and consented to by the participants before the interview. They also have the right to withdraw from the study at any time without requiring any reason. All participants’ identities were kept anonymous, and participants were identified in the data using the Participation Identification Number (PIN).
The data analysis generated three broad themes that illustrated nurses’ views of their role in providing support to parents in the neonatal intensive care unit: (1) Emotional and informational support, (2) Keeping the support going, (3) Seeking help from others. Quotations of participants are used to illustrate findings.
Emotional and Informational Support
The participants in the study agreed that giving emotional support in the NICU setting is critical. There are several ways to deliver this support cited by the participants, such as building rapport with the parents by orienting them on their environment. This can establish a trust relationship with the parents.
We anticipate that the patient’s stay will be lengthy. Parents are already terrified by the word “ICU.” As a result, when they first arrived, we talked with them and became friends with them. This might provide comfort to them as well as support to their parents. All of this enables them to open up to us and ask us questions about their concerns (Participant 10)
While engaging with the parents, the participants stated that they also provide reassurance to help the parents cope with their feelings.
I usually suggest that the parents take a break. All of us here, including the nurses and doctors, are doing our best to help your baby. Just saying that will reassure them and allow them to smile a little, talk to us without feeling embarrassed to ask questions and get information (Participant 8)
While comforting them, the participants also help the parents to focus less on medical treatment and more on the spiritual side of life.
We also advise parents to recite prayers for their babies in times of need. Everything will be well if it is God’s will. All matter must be returned to God (Participant 3)
Participants agreed that parental participation might help parents cope emotionally. They would help the parents care for their baby by holding it and changing diapers. They also allow parents to feed Orogastric Tubes, but they should share a few alert signs they should observe when feeding.
We teach the parents how to give the OGT feeding and observe their baby, as some premature babies become blue while feeding. We also advise them to look out for signs of trouble breathing. Some babies are not tolerating their feeding (Participant 3)
Another salient support reported by the participants is that informational support according to their needs. They also encourage the parents to ask questions to identify their concerns. Moreover, they regularly update the parents on any changes in the baby’s plan, management, and treatment to prepare them.
Parents often ask questions they already know the answers. I think they keep asking until they are satisfied with the answer (Participant 4)
Although giving informational support is essential for the parents, the participants reported that they just explained the nursing care part and did not elaborate on the medical aspect.
We usually tell parents simple things. For example, our nursing care and the progress of the baby. Usually, parents inquire about their baby’s weight (Participant 6)
Participants described that they are generally careful while presenting the baby’s medical condition to avoid misinterpretation, leading to anxieties.
It is unlikely that we fully explain the medical aspect of the neonates’ condition or about the surgical procedures. We let doctors explain things to parents. We are afraid of speaking or doing something wrong. Parents will ask questions until they are satisfied (Participant 6)
Keeping the Support Going
The participants described the challenges in keeping the supports going, mainly when there is concern about the uncertainties of the baby’s condition. The participants reported finding it difficult to answer, explain, and find the right words to the parents, especially in critical conditions.
When parents ask if their baby is OK or will live, the answer is never simple since each baby is different. Parents usually inquire about the NICU stay of their child. It is difficult to say (Participant 3)
Furthermore, participants mentioned that approaching the parents can be challenging because they cannot accept their newborn’s condition.
It is tough if the parents cannot accept their baby’s situation. Even after we clarify, parents refuse to hear negative stuff about their baby (Participant 4)
Some of the participants also described that approaching parents who have neglected their babies could be difficult.
Some parents only see their babies once in a while. As a result, we are unable to reach them. It is challenging for us to get them to engage in the care (Participant 10)
Furthermore, the participants reported that providing support to the parents had been challenging due to time constraints. This can be due to the imbalanced nurse-patient ratio, work overload, and the need to prioritise the neonates’ care.
When there are multiple newborns to look after, it might be difficult to provide timely support to the parents. Parents, of course, require attention. They have some questions. Unfortunately, we do not have the time to assist these parents with many things on our plates (Participant 5)
The workload increases when multiple healthcare professionals see a patient. The multidisciplinary team did not always agree on decisions, and communication was hampered. Thus, providing ongoing information support to parents can be difficult for the nurse.
When multiple teams are caring for the newborn, their plans can conflict. It happened that they forgot to update the other team, and the parents asked us (Participant 5)
Seeking Help from Others
The participants explained how they would seek help from the doctor to explain to the parents while they were occupied with their nursing duties to keep the support going. They also stated that when the parents required additional medical information, they would consult with the doctor.
Some parents require detailed explanations. They inquire about X-rays, medicine, and more. So, whenever possible, we would involve doctors in the explanation (Participant 8)
When it comes to providing emotional support, the nurses appear to be prepared with their ideas and enlist the help of other colleagues in addressing the requirements of the parents.
Emotional support takes time. So, I generally ask a colleague to first chat to and comfort the parents (Participant 5)
The findings provide a glimpse into the nurses’ views of providing parental support in the NICU in Brunei Darussalam. It reveals two primary supports that the participants have delivered to the parents: the emotional and informational. In addition, there are two sets of challenges in keeping the support going, namely the uncertainties and time factors of giving parental support. In order to solve this, they would involve the doctors and their colleagues to help them.
The participants pointed out that they must build rapport with the parents to establish a trust relationship in giving them emotional support. It is stated in a study on parents of premature infants in NICU that the nurses are expected to develop a relationship of confidence with them as a form of emotional support (Gutiérrez et al., 2020). An integrative review of parent satisfaction with care provided in NICU shows that nurse-parent relationships are the most crucial factor in influencing parents’ satisfaction with their NICU experience (Cano Giménez & Sánchez‐Luna, 2015). It was stated that parental support could be strengthened by developing trust relationships between parents and the healthcare team (Foe et al., 2018). Moreover, in research on the perceived needs of the parents of premature infants in NICU, assurance was found to be a critical need for the parents (Bhandari et al., 2017; Wang et al., 2018). A study on NICU parents who shared what they feel substantial in making their experience better stated that they wanted their voice to be taken seriously, especially when identifying changes in the condition and decisions in caring for their baby (Petty et al., 2019). A study also proves that spiritual care received by the mother in NICU has a lower stress level than those who only received usual care (Küçük Alemdar et al., 2018). The participants also involved the parents in caring for their children. Parental involvement in infant care, which provides bonding time for both parents and baby, is another element of emotional support. Hence, we support the parents’ autonomy in caring for their baby (Feeley et al., 2016). Bonding time between them was also proven to improve both parents and the baby (Foe et al., 2018; Akkoyun & Tas Arslan, 2019).
Another primary support by the participants in this study is informational support according to the parental need. This is where they encourage parents to ask questions in order to establish their concerns. This act of encouragement is vital because, in a study on NICU parents, they sometimes feel uncomfortable. They do not want to burden the nurses when asking for help (Serlachius et al., 2018). According to the nurses, some parents ask many questions until they are satisfied. This is to accommodate their needs in knowing more information that can reduce anxiety and control their baby (Serlachius et al., 2018). Moreover, nurses also prepare parents by continuously updating parents on any changes in the treatment plans of the baby. Providing adequate information about their baby through effective communication with parents can increase parents’ satisfaction (Sankar et al., 2017).
However, in keeping the support going, the participants experienced several challenges. First is the concern about the uncertainties of the baby’s condition. It is difficult for the participants to approach, answer, explain, and find the right words for the parents, especially when the baby is in critical condition. A study on NICU nurses described challenging factors in their interaction with the parents. It was reported that nurses are more likely to experience a challenging parent-staff interaction when there is medical complexity in the baby’s condition and extended stays in the NICU (Friedman et al., 2018). This causes nurses to balance the parents’ emotional condition and the information shared with the parents to avoid counter-productive feedback and maintain open, transparent and honest communication between the parents to maintain a trust relationship (Strandås & Fredriksen, 2015). Furthermore, this shows that each parent needs individualised parental support from the nurses, which effectively reduces the parents’ anxiety and depression compared to standard care (Cano Giménez & Sánchez‐Luna, 2015).
Time was another factor that proved challenging for the participants in delivering their support to the parents. An optimal number of nurses allows them to allocate enough time to support the parents effectively (Akkoyun & Tas Arslan, 2019). The effect of this challenge can be reflected through a study on NICU parents in assessing their satisfaction with systems of NICU care where they shared that there is limited time to answer their concerns (Sankar et al., 2017). In a study on NICU mothers determining the factors and environmental deficit in NICU, it was evident that the mothers felt a lack in the amount and quality of communication with the nursing staff to explain things to attend to their concerns (Williams et al., 2018). A study on physicians’ and nurses’ perspectives on the challenges in implementing family-centred care in NICU stated that work overload limits their time interacting with the NICU parents (Mirlashari et al., 2020). Research on NICU parents’ satisfaction in NICU care suggested less satisfaction in the care and treatment where nursing care was missed, such as comfort and talking to the parents. Their satisfaction is vital as their NICU experience acts as a foundation of their parental role (Lake et al., 2020). Another study on NICU nurses shared the same findings. They also often find it challenging to balance critically ill patients and parents as they need to prioritise caring for the patient in an acute situation (Strandås & Fredriksen, 2015). It was a challenge when duty had similar importance with nurse-parent communication (Kadivar et al., 2015). The findings also revealed that the multidisciplinary healthcare team sometimes does not share the same decision and impaired communication. Continuity of care can be challenging to maintain when there are many other staff involved in the treatment with different professional judgement, opinions and ethical values, which can cause confusion among parents and raise their concern for the well-being of their child (Strandås & Fredriksen, 2015). This usually happens when the interprofessional team cannot reach a common ground in complete agreement and share a decision (Dunn et al., 2018). In addition, parents have reported that there are organisational problems which comprehend on lack of care continuity between staff, inadequate collaboration with other healthcare disciplinary team, absence in a nurse who is taking care of the parents only and poor information giving during handover report to next shift resulting in impaired communication between nurses and parents (Kadivar et al., 2015).
In keeping the support going, the participants would seek help from others; they would involve the doctors and their colleagues in helping them. Thus, they must also provide informational support to the NICU parents regarding the baby’s condition, especially regarding medical-related information, requiring their expertise and robust explanation. To maintain the information support is delivered to the parents, the nurses would seek help from the doctor to explain to the parents when they are occupied with their nursing tasks. Communicating with the healthcare team is a positive interpersonal behaviour that can ensure the quality of nursing care and contribute to a positive workplace culture (Oldland et al., 2020). It is the role of a nurse to collaborate with other health care providers and assist in the medical care while implementing the nursing therapy (Barbosa, 2013).
The study needs further research to understand the challenges experienced by the NICU nurses and why these challenges arise in practice, education and supportive environment. The researchers recommends educational training to deliver emotional support for parents with critically ill babies or medical complexes. This enhances the nurses’ skills and confidence in providing holistic care to the parents and maintaining continuous efficient support.
The study’s main implications for nursing practice, both nationally and internationally, include the urgent need for nurses to get structured training and resources to equip better and empower them to support parents in such situations, such as emotional support training. Such training may provide personal and professional improvement for nurses and healthcare team members through a focused time of debriefing sessions among the healthcare team. In addition, future research should look into the available resources to parents and provide culturally consistent and structured support in the future.
In this current study, the participants described the emotional and informational supports given to the parents in the NICU setting. While they positively provide such care, they also expressed concern over the embedded challenges. Simultaneously, the participants also reported their attempts to balance work demand and parental support. Continuous engagements with doctors and nursing colleagues are deemed critical in order to provide more robust parental support. This study has extended our understanding of the parents’ perceived emotional and informational supports in the NICU setting. However, this may be constrained through concern over nurses’ ability to manage the work demands. Further research should be undertaken to examine parents’ views of the nurses’ supporting role; this can, in turn, improve the experience and quality of emotional care and informational needs for the parents.