Experiences of the mothers of infants hospitalized in the neonatal intensive care unit (NICU)

1 Introduction

About 9.6 to 12.9 million preterm births occur in the world every year [1, 2]. These newborns must be immediately hospitalized in the neonatal intensive care unit (NICU) [2, 3]. Giving birth to a premature baby and NICU hospitalization may have long-term effects on the parents and influence the parent-child relationship in the future [4]. When a premature baby is born, the natural process of care and the role of parents are affected. Most mothers may experience feelings like tension, depression, frustration, and failure in the early stages of preterm birth [5, 6]. It is very difficult for mothers to see their neonate attached to tubes and wires surrounded by the medical staff [7]. The family finds itself in a state of confusion. On the other hand, most parents are unaware of the complex problems caused by prematurity and are concerned about the health of their baby in the future. Unawareness about the immediate condition of the infant and uncertainty about the baby’s health status in the future are the most important sources of stress and tension. Moreover, the mother’s health is at stake and postpartum depression may occur due to stress and anxiety [1 , 8]. According to the results of a study, the mothers of premature babies described having a premature baby as unexpected and unpredictable [1, 2]. Lengthy NICU stays make mothers feel incompetent in executing their parental role, decrease their satisfaction with their maternal role, and disturb their emotional relationship with their baby [2]. On the other hand, studies have shown that lack of an emotional relationship and interaction between the mother and the baby results in a feeling of strangeness in the mother, which negatively affects her emotions and feelings [1 , 9].

The mother-newborn relationship is more important in babies hospitalized in the NICU than in healthy neonates. Therefore, the nursing and medical team should prevent any disturbance in the mother-baby relationship and encourage their participation in the care process of their neonates via giving them the required information about the process of taking care of premature newborns. Providing the best care programs for premature babies and helping mothers to accept their premature babies and grow their sense of motherhood is a challenge for nurses [10 –12].

A review of the literature shows that mothers face many challenges and difficulties during their babies’ hospitalization. Kadivar et al. conducted a study to assess the mothers’ perception of infant hospitalization in the NICU and found that infant hospitalization was associated with living with tension and empowerment attempts [5]. The results of a study by Lindberg and Ohrling with the aim of exploring the experiences of the mothers having a premature infant hospitalized in the NICU showed that they were not prepared for having a premature baby and experienced feelings like worry, stress, and anxiety during hospitalization. These mothers believed that they could manage and cope with the situation if they received the required information from the medical team and appropriate emotional support from their family [13]. Brinchmann et al. evaluated the parents’ experiences with life and death decisions concerning their premature infants and concluded that they suffered from indecision, uncertainty, and lack of knowledge about the care of the premature newborn [14]. A study by Malakouti et al. to evaluate the mothers’ experiences of having preterm infants in the NICU showed that the mothers faced a range of positive and negative experiences. Moreover, the nurses had an effective role in empowering mothers and encouraging their partnership in taking care of the infant in order to form positive and reduce negative experiences [15]. Kadivar et al. reported that mothers experienced a great deal of stress during their infants’ hospitalization but the mothers who participated in their study managed to reduce their stress through narrative writing three times a week [1]. Kadivar et al. conducted another study to assess the effect of narrative writing on stress sources in the NICU and found that narrative writing had the greatest effect on the infant’s behavior and appearance followed by sights and sound of the unit and maternal role knowledge [2]. Considering the above and the mothers’ problems in the NICU, interpretation of the mothers’ perspective and assessment of the factors related to the NICU hospitalization from their perspective enhance our knowledge and improve the quality of the services delivered to premature infants in the NICU, because identifying the mothers’ perception of the NICU admission may enhance our basic knowledge required for care of preterm infants. Therefore, there is a need for more qualitative studies in this regard. In other words, this study enjoyed a qualitative design to enter the mothers’ minds and use their viewpoints to explore their perspective about the NICU hospitalization. This study was conducted to investigate the experiences of the mothers of infants hospitalized in the NICU.

2 Materials and methods

This qualitative study was done using a conventional content analysis approach. As a research method, this approach is used to subjectively interpret textual data; hence, the findings are far beyond objective descriptions of the data. In this approach, categories are extracted from the data to uncover hidden themes and patterns. In our study, the meanings were interpreted objectively and systematically and a process of categorization was adopted to identify themes [16]. In conventional content analysis, the categories and their names are derived from the textual data and the researchers immerse themselves in the data to find a new insight of the phenomenon [17]. In this study, the participants were selected using purposive sampling. The researcher looked for people who had a rich experience of the event and were able to express it explicitly. Maximum variations (maternal age and education, mother’s length of stay in the hospital, type of delivery, infant’s age at hospitalization, and hospitalization reason, etc.) were considered in sampling. Thirty-five mothers whose infants were hospitalized in the NICUs of the Imam Hossein Hospital and Fatemieh Hospital, Shahroud, Iran were selected for this study. The study was done in 2016. Individual semi-structured interviews were conducted until data saturation was achieved. The inclusion criteria for the mothers were having an infant hospitalized in the NICU and willingness to participate in the study and express the experiences. Necessary arrangements were made with mothers regarding the interview date and place. The questions were related to the mothers’ experiences of NICU hospitalization. During the interview, the participants were encouraged to share their experiences about their infants’ hospitalization in the NICU. First, a general question was asked, “Can you please share with me your experience with one day of your baby’s NICU hospitalization?” Then, follow-up questions were asked to obtain more information and clarify the ambiguities; these questions were asked according to the participants’ responses. The questions continued to obtain deeper information. Moreover, the mothers were requested to provide real examples to illustrate their statements. Each interview averaged about 40 minutes and the data were analyzed consistently and simultaneously with data collection, using the Lundman and Graneheim algorithm for qualitative content analysis [18].

The process of induction and coding was used for content analysis of all interviews. The interviews were listened to several times and transcribed verbatim immediately. Then, the transcripts were read carefully to obtain a general understanding of their content. Words, phrases, and paragraphs containing important points relevant to the research topic were selected as semantic units. The interviews were reviewed several times and broken down to the smallest semantic unit.

In the next stage, the codes were reviewed several times and placed in the proper category and sub-category based on their semantic similarity; Semantic units were extracted in the form of primary codes. Then, the codes were transformed to themes and a meaningful conceptual pattern was formed using the relationships between themes. Constant comparison was done to ensure the validity of themes and subthemes extracted from the data, and their supporting resources were derived. The data were broken down into discrete parts through developing themes and subthemes; then, to obtain similarities and differences, the data were carefully evaluated and questions were proposed for conceptualization. In this way, the related codes were placed in one theme and a conceptual name that was more abstract than all of them was selected to define it. The data become related in a new manner through coding and producing a relationship between the related subthemes. When a certain phenomenon emerges from the data, the contents of the subtheme are also identified. The codes and subcategories are reviewed to identify the main themes of the study [19]. To prevent bias, the researchers did not involve their pre-assumptions in the process of data analysis (bracketing). The Lincoln and Guba criteria were used to evaluate the accuracy, validity, and reliability of the data. In qualitative research, these criteria are employed to enhance the fitness or to apply trustworthiness to the findings [18]. Prolonged engagement with the data, intimate relationship with mothers, and prolonged attendance in the hospital facilitated the collection of actual data. Moreover, the relationship and contact with participants assisted in earning their trust and understating their experiences. Building a good relationship with participants and allocating adequate time to data collection according to their viewpoints enhanced the credibility and dependability of the data. Maximum variation sampling increased data credibility. Moreover, to resolve ambiguities in coding, the participants were requested to review the transcripts to increase data credibility; for this purpose, the researcher shared some parts of the interviews and codes with the participants to find similar concepts in their statements. The fitness of the extracted themes was compared against the participants’ experiences to ensure the accuracy of the codes, categorization of similar codes, and their interpretation. The codes that did not represent the participants’ viewpoints were modified and corrected. Conformability was realized by accurate documentation of the procedures and stages of the research in an unbiased manner. To ensure dependability, the audio files were reviewed immediately after the interviews and transcribed. Moreover, external check by two qualitative research experts, maximum variation sampling, and audit trial were used to increase data dependability.

To ensure transferability, the findings of the present study were shared with other mothers whose neonates were hospitalized and had a similar situation. They were asked if they had similar experiences. Recording the details enabled researchers and other stakeholders to make decisions based on the findings of this study.

The study was approved by the Research Council and Ethics Committee of the Shahroud University of Medical Sciences. Verbal informed consent was obtained from all mothers for participation in the study and audio recording the interviews. Anonymity and confidentiality were ensured during the interviews. The participants were free to leave the study at any stage. The participants were informed that they might be contacted for complementary interviews if needed and the general results of the study were shared with them.

3 Results

In this study, 35 mothers (18–40 years old) whose infants were hospitalized in the NICU for at least 4 days were selected purposively. Table 1 presents the demographic characteristics of the mothers and neonates. Two hundred and nine primary codes were extracted from the interviews. After removing overlaps, 95 primary codes were categorized in 8 subcategories and 2 accessory categories considering their semantic similarity (Table 2).

The categories of “mothers’ worries” and “mothers’ hopes” were merged into a more general, abstract category named “dual feelings about the baby”. The subcategories of “awaiting discharge”, “prayers for recovery”, “good feelings following signs of improvement”, and “positive side of hospitalization”, considering their similarity and consistency in reflecting a good feeling and attention to the course of recovery were placed in the accessory category of “being hopeful”.

4 Discussion

Perceived physical and psychomental problems was one of the categories extracted from the mothers’ experiences. This category had different aspects, including a feeling of guilt, anxiety, and worry. In this regard, Sheilds et al. and Kadivar et al. found that the NICU environment was a stressor for parents [2, 8]. Some studies have shown that having a baby in the NICU for any reason is a stressful and painful experience and most parents feel uncertain and perplexed, frustrated, guilty, or frightened thinking about the life or death of their baby or the long-term effects of the disease [5, 20]. Moreover, research has shown that mothers who are separated from their babies experience high levels of depression and may exhibit different psychological reactions [1, 4]. Miles et al. reported that mothers found the NICU environment more stressful than fathers. NICU hospitalization breaks the close relationship between the mother and her baby, and the mother’s anxiety about the baby’s future hinders the mother-infant attachment process [6]. In the present study, the mothers exhibited increased anxiety during the NICU admission because they were not able to control the situation. In a study by Kohan et al., the mothers felt that they had no role in the events and lost control of their baby’s life [7]. In line with the results of the present study indicating that mothers suffered physical problems besides psychomental problems, Sarajevo et al. found that many parents experienced reactions like insomnia, headache, loss of appetite, nausea, fear, restlessness, anxiety, guilt, and concentration problems following their baby’s hospitalization [21].

Another category was attention to inadequate facilities and equipment for mothers. In this regard, Salehi et al. found that factors like poor food quality, lack of comfortable chairs in the mothers’ room, poor ventilation of the rooms, and a long distance between the ward and the mother’s room affected the satisfaction of the mothers of infants hospitalized in the NICU [9]. A study by Arefi and Talaei also showed that the highest dissatisfaction was related to facilities and equipment of the rooms, food quality, and daily change of sheets and hospital gowns [10].

Perception of relatively respectful behavior of treatment staff was another category of the mothers’ experiences. The mothers that witnessed the nurses’ good care and relationship developed trust in them. However, the relationship was not sometimes respectful, which caused distrust in mothers. Some studies have shown that mothers of infants admitted to the NICU have different opinions about the supportive role of the nurses; some mothers have a positive attitude towards the nurses’ manners but have problems in communicating with nurses who are inattentive to their needs [11, 12]. In this regard, the results of a study by Aein et al. showed that lack of time and a high load of work resulting from understaffing as well as the insufficient interpersonal competencies of the nurses and the nature of the nurse-physician relationship downgraded the parent-nurse relationship. The nurses, despite having knowledge of the priority of communication with the patient, have to give priority to technical care over communication with infants and their parents [22]. Unlike our results Hajian et al., Seyf et al., and Seidi et al. found that most patients were satisfied with the quality of the services [18 , 24]. Studies by Lee et al. and Cho et al. revealed that most patients (58%) were completely satisfied with the services. However, differences in the satisfaction of parents may be due to differences in the organizational structure of the health centers, cultural and social differences, and the attitudes of the patients [22, 25].

Worries about hospitalization was another concept experienced by mothers of infants admitted to the NICU. One aspect of this concept was lack of knowledge about the environment and the fear of the consequences of treatment and hospitalization on the baby’s development. In this regard, Rasti et al. found that parents required knowledge and information about the possible consequences of prematurity and preventive methods [26]. This concept has been presented as the ‘fear of the unknown’ for the future of the child in other studies and is related to the baby’s prognosis and his/her future developmental growth [27]. Mock and Leung found that mothers of preterm infants were eager to receive accurate information about their babies and the administered drugs, reasons for tests, recovery time, and disease complications [28]. Fear of the unknown was another aspect of the mothers’ concerns in the NICU [1, 2]. Valizadeh et al. reported that the presence of monitors and special equipment of the ward, other babies under mechanical ventilation, and constant sound of monitors were the most important environmental stressors [29].

However, despite the concerns and problems, mothers also saw a positive side to hospitalization. They mentioned that the NICU admission provided them with an opportunity to interact with other mothers and become aware of their problems, which had a significant effect on reducing their stress. In this regard, some references have mentioned “improvement” as the most important beneficial effect of hospitalization [30]. Moreover, the findings of several studies suggest that patients are actively involved in the process of providing comfort during hospitalization and do not wait for it to occur. For example, if no nurse is available and their personal capabilities are limited due to the disease or hospitalization, they seek help from family members or other patients to achieve comfort. This interaction is very important in providing a feeling of security and emotional support. In this regard, according to Jouybari et al., patients in one room develop an intimate relationship with one another, which produces a strong motivation for cooperation and improves social interactions [31]. Most mothers stated that they were always waiting for the discharge of their baby and considered it as a sign of recovery. According to Boykova et al., discharge and transition from hospital to home is critical for mothers because they take on all the caregiving responsibilities. Therefore, if the mother lacks the required skills, unpredictable problems might occur [32].

5 Conclusion

The mothers of preterm infants suddenly find themselves in an unexpected situation. They always expected to have a healthy child but after the hardships of pregnancy and labor, hey experience an unanticipated situation. The components of this experience include confusion resulting from being in an unfamiliar environment, a feeling of frustration, and self-devotion. The nurses’ awareness of the mothers’ experiences can help design interventions to promote the quality of care for mothers and infants in the critical period of the NICU admission.

The results of our study showed that the mothers of preterm infants admitted to the NICU had many problems. The parent-infant and parent-nurse relationship are severely affected by hospitalization and its associated problems. A deeper look at the mothers’ experiences suggests that they need the support of the treatment team. This support can be in the forms of establishing a good relationship with the mothers, giving them the necessary information about their baby’s status, and education or participation of the mothers in the process of care for her preterm infant. Moreover, it is necessary to develop methods to support the mothers’ emotions and promote their participation in the care process. Mothers get a good feeling from meeting other mothers during the NICU admission, which gives them a strong motivation for collaboration and improves their social interactions.

Disclosure statement

No potential conflict of interest was reported by the authors.