Parental Experiences in Neonatal Intensive Care Unit at Felege Hiwot Comprehensive Specialized Hospital, Bahir Dar, Ethiopia: A Phenomenological Study

Background: Neonatal intensive care settings are important to save the lives of sick neonates; however, parents are challenged by many stressful conditions during their stay outside the rooms of intensive care units. Therefore, this study aimed to explore the lived experiences of parents in a neonatal intensive care unit at Felege Hiwot Comprehensive Specialized Hospital, Bahir Dar, Northwest Ethiopia. Methods: In this study, a phenomenological qualitative approach was used to explore parental experience and data were collected using in-depth interviews from purposively selected parents. In addition, a thematic approach was used to analyze the data using Open Code Software Version 4.02. Results: In this study, parents found to developed psychological problems like anxiety, stress, worry, hopelessness and state of confusion. Emotional related conditions were anger, crying, sadness, frustration, dissatisfaction, regret, disappointment, feeling bad, self-blaming, nervousness, disturbance and lack of self-control. Parents expressed that health care providers showed indiscipline, lack of commitment and not cooperative at all. Conclusion: Parents of neonates in the intensive care unit were challenged due to a shortage of money and traveling a long distance. Psychological and emotional factors were identied as major stressors of parents during their stay in the NICU. Hence, providing psycho-emotional supports, strengthening parents–healthcare providers’ interaction, and scale up neonatal intensive care unit service into the primary health care unit are recommended. and attached medical devices to their baby (10–14). Other studies showed that poor parents-HCPs interaction (15–17), limited counseling and inconsistent information obtained from HCPs led to parental stress (4, 17–19). However, parents whose neonates admitted in the NICU had low level of stress and high level of support from HCPs (20).

Parents whose neonates subjected to severe medical problems experienced feeling of exclusion and lack of belongingness to the NICU (6,8,28,29). Likewise, parents felt that the care provided in NICU is compromised due to HCPs' work overload, disease oriented nursing care, longer hospital stay, shortage of healthcare providers, lack of beds and medical equipment (30,31). However, they had a sense of encouragement, empowerment and empathy when the HCPs felt their feelings (8,32).
Although parental experience in the NICU was explored in different countries (2,5,(32)(33)(34), there are variations in, accessibility of health facilities, parent-HCPs and parental involvement in the care due to socio-cultural differences, nurses' working culture and the hospital setting (35)(36)(37)(38). And also, it is not well explored in Ethiopia. The information generated from this study is essential to the hospital to improve the services by facilitating NICU resources. In addition, it would help programmers to formulate strategies targeted the NICU and scale up the service to the periphery level. Therefore, the aim of this study was to explore the lived experiences of parents whose neonates were admitted into a NICU.

Study area and period
This study was conducted at Felege Hiwot Comprehensive Specialized Hospital (FHCSH), Bahir Dar, Northwest Ethiopia from August 1 to 15, 2020. The hospital was established in 1961 and currently provides service for about seven million people. The hospital has seven wards including the NICU. It also has 859 HCPs (133 physicians, 438 nurses and 56 midwives) speci cally; six physicians and 31 nurses were working in the NICU and there were 75 beds with its supportive machines. The 2019 six months report of FHCSH showed that 1296 neonates were admitted in the NICU. The NICU ward were crowded and no space to take rest for family attendants and visitors, no waiting rooms and chairs, most visitors and attendants sat on patients' bed. In the neonatal side, more than six babies were admitted within one room and more than two babies were under one radiator warmer or phototherapy. In the maternal side, more than ten mothers per room were observed. The building lacks a special provision for disabled parents and the elevators were not functioning properly at the time of the study.

Study design
We used a phenomenological qualitative study design to explore the lived experience of parents when their neonates were admitted to NICU.

Sample and recruitment
A total of 18 parents (9 mothers and 9 fathers) whose neonates received healthcare in the NICU were included in the study. Parents were illegible to participate in the study regardless of mode of delivery and health status of the neonates. To recruit the NICU parents, rst we registered details of different medical characteristics of admitted neonates such as low birth weight, prematurity, sepsis, perinatal asphyxia, meconium aspiration syndrome, respiratory distress syndrome, jaundice and twins. Based on the information obtained, parents were selected purposively.
Data collection method and tools Data were collected by experienced experts using semi-structured interview guide and audio recorder in nurses' duty rooms. The research team prepared and reviewed in-depth interview (IDI) guide and translated into the local language Amharic. The English versions of the guiding questions have been included in the supplementary le (S1 File). Data collection was continued until adequate, complete and little new information came from the interviewees.

Trustworthiness
Trustworthiness was veri ed to address the dimension of credibility, transferability, dependability and conformability. The credibility of the study was ensured by having prolonged engagement in the eld and persistent observation to obtain in-depth data the data. Transcribed and translated data were veri ed by inviting experienced researchers and by repeated engagement of authors in the transcription, translation and coding. Thick description of the data was done to increase transferability of the study. Data transcription; translation and interpretation were done using scienti c procedures. Finally, conclusions were clearly drawn from the data.

Data analysis
The recorded interview was transcribed verbatim and translated into English language for the subsequent analysis. Consistency of the transcribed data was checked by listening and reading repeatedly. When there were variations in translation, discussions were made and results explained after the consensus reached. Data coding was done sentence by sentence to create themes that have similar ideas. Thematic analysis was used to describe the data obtained from interviews. Open Code Software Version 4.02 was used to analyze the data.

Socio-demographic characteristics
In this study, 18 parents of neonates admitted to NICU were interviewed. All of parents were Orthodox Christian while 17 of them were married and eight parents were farmers. Seven parents had secondary and above educational level and 12 parents were from rural area. Of the total parents, four of them were traveled more than 100 kilometers to arrive at FHCSH (Table 1). Description of parental experiences Parents whose neonates admitted into the NICU were exhausted and bored due to prolonged stay and nancially insecure to ful ll their daily living expenses. They could not access a space to take physical rest and shortage of water to keep their hygiene. Additionally, they were suffered from longer separation with their neonates due to limited visiting time that regulated by the hospital. They were uncomfortable with the care given to their neonates because they were restricted to engage the care of neonates. Regarding the health condition of the neonates, parents have a fear that their neonates might die. Parents also concerned with seasonal occasions that might compromised the care of their neonates as a result of the fear of COVID-19 transmission. At the same time, parents who are farmers were emotionally unstable because they were come during farming season, due to this reason they were highly interested to return to their home.

Themes
In this study, six main themes were identi ed. These include socio-economic factors, health facility related factors, parents-healthcare providers' communication, maternal and child health related factors, psychoemotional factors and current occasions ( Table 2). Theme I: Socio-economic factors Health service delivery in the NICU was free of charges, however, some parents suffered from shortage of money during their stay. A 35 years old father described as: Since I am not expecting that we will stay for several days, now I am running out of money. Hence, I faced problem in shortage of money". And also, another study participant said that "the ambulance and medicines are available by them [health facilities]. We have been here [NIICU] since last week; as a result, we have nished our money. We are staying here by the support of health professionals.
According to this study, travelling long distance from home to health facilities affected parental experiences in NICU. The distance from home to health facilities which had NICU service ranges from 5 to 240 km. As a 23 years old mother explained as:

Emotional factors
This study revealed that emotional factors like being angry, crying, sadness, frustration, dissatisfaction, happiness, regret, complain, disappointment, feeling bad, self-blaming, nervousness, disturbance and lack of self-control play great in uence on the parental experiences in the NICU.
The majority of parents whose neonate health condition had gotten worsen expressed their extreme sadness, disappointed, bad feeling and angry. For instance, 30 years old mother described as: "I was expressed in deep feeling, angry and sadness. Also I was disappointed, disturbed and crying a lot".
Furthermore, a 27 years old father had experienced that: "… I was nervous and experienced lack of self-control, especially, when the health care providers told me that the neonate is seriously ill".
Besides, a 23 years old mother said: "I feel sad and blame myself because I had to give my breast feed as soon as my baby was born. She also added: "… the current health condition of my neonate becomes deteriorated which makes me feeling bad. In general, it was frustrating and dissatisfaction moment for me".
Moreover, a 36 years old mother also described it as: A 33 years old mother described her experience as: When I need an information about the progress of my neonate health condition, I can talk directly with the HCPs. I am satis ed with the interaction that I had with them. The HCPs are good in providing health information.
In addition, a 26 years old parent said: "I am very satis ed with the HCPs' communication and they are cooperative". A 40 years old priest parent also explained: "the health team is very kind and cooperative. We have good communication with the health teams. … like wisdom is given for King Solomon, I wish them, God may give long live and grow in their profession".

Parental involvement
This study indicated that parental involvement contributed to the improvement of critically sick neonates.
A 24 years old mother described as: "I am keeping the medical equipment to prevent detachment from the neonate's body. Also, I have other roles like: breastfeeding, keeping the personal hygiene". On the other hand, a 40 years old father said: "My role in the NICU is not beyond facilitating medicines and laboratory requests".
Theme IV: Health facility related factors

Resource related
This study showed that parents experienced unavailability of some medicines, shortage of water for toilet and hygiene, lack of spaces to take rest and limited time to visit their neonates. In addition, shortage of space to take a rest mentioned as a barrier for parents during their stay in the hospital. A 35 years old father described as: "I faced a physical problem since I do not get a proper space to take a rest or sleeping within these two weeks".
Furthermore, parents complained that staying in the hospital was longer than their expectations. Although they expected that they return to their home within few days, they stayed more than a week in the hospital. This increased their expense and puts them in nancial trouble.

Health workers related factor
Even though there were supportive HCPs, some of them lacked discipline, commitment and not cooperative to support parents. As parents explained, laboratory investigations were not done as a result of absence of healthcare providers. For example, a 36 years old father explained as: "X-ray was ordered but the experts were absent for the whole day and I am disappointed as a result of their absence". Theme V: Maternal and child health factors The severity of child health illnesses such as poor sucking re ex of the neonate contributed to parental stress in NICU. A 40 years old parent said: …the child cannot take the expressed breast milk. I have a strong need and effort to survive my child, but when I see the child, he is weak and no improvement. A 30 years old mother explained her experience as: "…what can I do mister, my babies are seriously ill. Doctors try to help them [twins] but they are not improved from their illness and I am too worried to their illness".
In NICU, most of the time, parents worried about the status of their neonates. However, in some instances when both the mother and the neonate get severely ill, the father experience high stress and give more attention to the mother than the neonate.

Discussion
This study was conducted to explore the experiences of parents in the NICU. The major identi ed themes were socio-economic, health facility related, parents-health care providers' communication, maternal and child health related, and psycho-emotional factors and current occasions.
Financial constraint was one of the parental challenges presented in the NICU. These challenges include long stay in hospital and extra costs for buying stock out medicines and their daily expenses like transportation and food. The previous study supported that additional costs challenged NICU parents (26). This agreement might be linked with long time hospitalization and other expenses outside of the NICU.
In addition, parents complained that travelling long distance from home to health facilities affected their experiences in NICU. Consistent with this study, parents faced hardships associated with traveling long distances from their homes to the health facilities (26).This might be related to inaccessible NICU setting for parents.
Anxiety, stress, worry, and confusion were the common psychological problems that parents experienced in the NICU. Not only the parents, but also the whole family disturbed "my families are too much confused". Comparably, the anxiety level of parents was high and had unforgettable moments (40). Most parents were depressed and stressed due to the NICU atmosphere (2,41,42). The more likely explanation of this similarity could be due to unfamiliar parents with NICU medical equipment.
In this study, sadness, crying and lack of self-control were emotional problems that felt by parents in the NICU.
Other study revealed that parents felt broken heartedness, disappointment and fear. They perceived that "oxygen was bad because oxygen kills children"; it caused fears and worries for parents (22). Furthermore, the NICU fathers expressed that the situation was out of their control (23,27). Others also found that the most stressful events for parents were attached medical equipment and continuous noise of alarms in the NICU (29).
Even though parents wanted to visit their child frequently, the hospital had limited visiting schedule. In line with this ndings, reports showed that parents were challenged by strict visiting hours (26,43). The service provided in NICU for neonates was delayed which might increase neonatal morbidity and mortality. Regarding the facility resources; shortage of space and sanitary situations of the facility were often overwhelming. Similarly, other studies showed that there were no private family rooms and lack waiting area (3,26).
This study indicated that lack of compassionate and respectful care and unsupportive HCPs had negative consequences on parents, which mean the HCPs were not disciplined, lack of commitment and cooperative while they gave care in NICU. Other studies also showed that HCPs were unsupportive, careless and negligent (2,3).
Although parents had no clear role and limited engagement to care the child, the interaction between HCPs and parents was good and supportive. Providing holistic information on the progress of the neonates' health status for the parents had a positive impact on reducing their stress. This enhances parental service satisfaction in NICU. Other reports also substantiated that parents had gotten updated information about their infants' health condition and their engagement also optimal (3,13,22,26,27,(43)(44)(45)(46). In contrast, other studies reported that parents were not received adequate information from HCPs about their babies' progress (26,41).
Poor medical condition of the neonates contributed in aggravating parental stress. This situation made them worried if the life of their child ends up with complications and death due to poor medical progress. In accordance with this nding, the progress of infants' medical condition in uenced parental feeling (2).
The current situation, particularly COVID-19, threatens the parents and their family in terms of getting optimal care for severely ill neonates. It was related to poor HCPs approach. Other evidence showed that during the COVID-19 pandemic occasion, parents experienced higher stress than the usual time. And also, COVID-19 contagion had negative impact on parent-infant relationships (47).
This study has its own limitations; the interviews were conducted in the NICU, study participants might hide their feeling since they may perceive the care given to their child will compromise. This study also limited to include the health care providers perspective particularly in the parent-provider interaction.

Conclusions And Recommendations
Parents whose neonates admitted to NICU were challenged due to shortage of money and travelling a long distance. Psychological and emotional factors were identi ed as major stressors of parents during their stay in the NICU. On the other hand, unavailability of some medicines, shortage of water for toilet and hygiene, lack of spaces to take rest and limited time to visit their neonates were the concern of many parents. Likewise, some HCPs were not cooperative to provide information. Poor medical condition of both maternal and neonate as well as the current situation, particularly COVID-19, threatens the parents and their family in terms of getting optimal care in the NICU.
Based on the study ndings, we recommended that accessibility of NICU service should be scale up into the primary hospitals and health centers to avoid unnecessary expenditure of money and travelling long distance from their home. The health team staff should provide ongoing education for the parents to minimize the risk of developing both psychological and emotional related stress. The HCPs in NICU should involve parents to improve care given to the neonate and alleviate negative emotions. The hospital should provide training on compassionate and respectful care for healthcare providers to enhance parent-healthcare provider communication and supports.
The supply chain management system of the health facilities should be strengthened to avoid unavailability of medicines. And also, su cient waiting area and space for the care of the neonates should get due emphasis. The NICU setting should be designed in a way that HCPs and parents can manage their personal hygiene.
In addition, counseling services should be designed to promote psychological health of NICU parents. Increase the access of personal protective equipment to prevent the transmission of contagious pandemic disease (COVID-19) in the hospital. Finally, further studies with longitudinal qualitative design should be considered. Ethics approval and consent to participate: All procedures were performed accordance with the ethical standards of the institutional review board's guidelines and regulations and with the Helsinki declaration ethical standards. The institutional review board of Bahir Dar University, college of medicine and health sciences was approved the study (Ref. No.00255/2020). Support letter was written from the ethical review committee to FHCSH administrators to allow data collection in their hospital and permission was obtained from them. Prior to data collection, the objective of the study was clearly stated to study participants. The informed consent was obtained from each participant based on ethical committee's guidelines and in order to maintain the con dentiality of information, researchers were used anonymous codes.

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