Mother's support in NICU: A Focused Ethnographic Study


 Background: Mothers of premature infants in the neonatal intensive care unit (NICU) have complex needs and require a significant amount of support during the NICU admission. However, little is known about Iranian mothers support needs in the NICU. To explore Iranian mother’s experience of support in the NICU as well as explore nursing perceptions of mothers needs and practices that support mothers in the NICU.Methods: A focused ethnographic approach was adopted. Observation and interviews with 21 mothers, 18 nurses and 5 doctors were undertaken over a seven month period. Qualitative data analysis was conducted using the Roper and Shapira (2000) five-step framework. Result: The specific support needs of mothers of neonates in the NICU did not appear to be adequately identified by the treating healthcare team. There was also poor communication and inadequate sharing of information regarding the neonate’s clinical condition, diagnosis and treatment between both medical/nursing staff and the mother. This appeared to be a source of maternal distress. Conclusion: Cultural perspective Iranian nurses perceive providing support to mothers as an act of human kindness, a new paradigm is required where supporting mothers becomes a fundamental component of care provision.


Background
In order for parents to be able to participate in care and ful l their parental role in the NICU, a unit culture needs to exist that values supporting families. Members of the healthcare team must possess the knowledge and skills to effectively engage parents as active participants across the continuum of care and support them along their journey. Provision of both formal and informal support for parents is a key premise of FCC [10]. Given that nurses are the primary care provider, they have a critical role in providing this support [11].
Evidence suggests that the most important components of parental support are open communication, sharing of information, developing parent's self-con dence and provision of emotional support [18].
Internationally, there appears to be great variability in the type and amount of support that mothers with infants in the NICU receive.
Currently there is little data on mothers' experiences of support in the NICU. This paper reports ndings from a study that explored mothers support needs and experiences in the NICU and how nurses and doctors perspectives and care practices supported these needs.

Methods
The study setting was a NICU (level II) in Tabriz, Iran. The physical space of the level two NICU consisted of a large hall equipped with 24 incubators. There was an average of three nurses on each shift, which provided nurse patient ratio of 1:5-8.
The interview began with an open-ended question. Nurses were rst asked to "describe their experiences of supporting mothers in neonatal care." This was then followed up with questions such as "what do you think about supporting mothers?" "What kind of support do you think mothers need?" "Are there opportunities and constraints for supporting mothers?" "How do you meet the needs of supporting mothers?" Mothers on the other hand were rst asked to "share their experiences of support from nurses in neonatal care." This opening question was followed by others such as "what problems do you face while participating in infant care?", "Who do you see when you have a care problem?" "What help do you receive from nurses about neonatal care?" "How do nurses or doctors provide you with the information you need?" "What do you expect nurses to do to support you?"

Data analysis
The study rigor was obtained using Lincoln and Guba's [20] criteria . To increase the validity of the data, observation integration, interviewing for data collection, and re exivity was used throughout the research.
The researcher sought to increase the validity of the ndings by prolonged and profound involvement with the data and long-term presence in the NICU. Reliability and validity were determined by precise, stepby-step control of the research process and the control group by three dominant observers on ethnography and member checking by mothers and nurses.

Ethical considerations
Ethical approval was granted by the Ethics Committee of Tabriz University of Medical Sciences (Approval IR.TBZMED.REC>2016.789). All authors have signed written informed consent and approved the submission of this version of the manuscript and take full responsibility for the manuscript. The legal guardian of all participants signed an informed consent form that their data could be used for various clinical studies.

Results
Eighteen nurses, ve doctors and twenty-one mothers participated in the study. The demographic characteristics of participants are presented in Table 1. Two hundred and fty hours of participant observation was undertaken over seven months. Interviews were of 30-60-minute duration. Findings from this study showed that the culture of support in the NICU was one of compassionate support. Two themes emerged from the data: failure to meet the support needs of mothers and provision of support in special circumstances (  Failure of the nurse to accompany the mother in care. 2. Assigning responsibility of care to the mother and 3. Inadequate sharing of information.

Failure to Accompany the Mother in Care
Although nurses believed that supporting mothers was necessary, resource constraints, speci cally sta ng, meant that they did not have the capacity to provide such supportive careOne nurse demonstrates the inner con ict this causes when she says "Mothers, especially those who are from the country, are under signi cant pressure. It is di cult for us to support the mother as well as care for the neonate. It really hurts them and we can't help because we are so busy" (Nurse 14).

Assigning Monitoring and Care to the Mother
It was common practice for nurses to assign responsibility of monitoring and care to the mother. If a mother was constantly present, then the nurse was less likely to examine the neonate. Also, neonates whose mothers had previous experience of childcare appeared to receive less attention from nurses. This is because nurses had con dence in experienced mother's ability to perform simple cares. Often in these cases, nursing presence was minimal, for example, to provide the mother with speci c clinical instructions. Some of the experienced mothers were frustrated and dissatis ed that they had been assigned primary responsibility of care of their infant. They were displeased that because they were experienced mothers, nurses failed to see the need to assess the infant. This is demonstrated by one mother who said "I breast fed my son in the morning and then he went to sleep. Now he won't wake up which is worrying, so I went to tell the nurse. She told me to knock on his feet to get up. I knocked on his feet, he cried a little, and then he fell asleep again. I feel strongly that the nurse must examine my infant.
Maybe something has happened to him which is why he won't wake up. Nurses need to take more responsibility for care" (Mother 9).
Nurses' reliance on the mother's constant presence and availability also had negative implications for the mother's health. Rest for the exhausted mother was not protected. For example, if a mother was resting and her neonate began crying, the mother was expected to immediately tend to the neonate. On the other hand, lack of con dence in nursing care forced mothers to spend their rest hours in the chair beside the neonate -proximity was important. These fears around inadequate and/or missed care and frustration associated with unprotected rest is demonstrated by the following mother. "When I'm not present, no one cares for my neonate. When I'm asleep, no one is breastfeeding. You see I just went to sleep and my infant is crying and waking me up early" (Mother 16).

Inadequate Sharing of Medical Information
Mothers felt that medical staff, speci cally doctors, did not spend enough time sharing clinical information. They felt that there was not su cient time dedicated to answering questions and concerns they had about their infant. Barriers to medical staff not being able to spend time on communication purposes with family appeared to be multi-factorial. For example, lack of medical staff resulting in busy workloads and subsequent prioritization of clinical treatment and training. Doctors appeared to spend most of their time training students due to clinical demands. Sometimes prolonged training and time constraints meant they had to hurry to examine patients. The implication of this was that if a mother had more questions, she would have to wait for the doctor to nish medical rounds. Most mothers would seek out the doctor when they had nished rounds and were leaving the NICU to have their questions answered. In these instances, the doctor's brief answer to posed questions was not satisfactory. For

Support under Special Circumstances
As previously described, nurse patient ratios appeared to be signi cant contributing factor to mothers support needs not being met. High workloads meant they were unable to attend to the mother. However there were some nurses who did provide support for mothers whenever the smallest opportunity presented. These nurses exhibited empathy, kindness and compassion towards mothers. Within this theme of 'support under special circumstances,' three sub-themes emerged. 1. Reassuring the mother. 2. Accompanying the mother with reduced functional capacity and 3. Providing information.

Reassuring the Mother
Mothers of neonates who had physical abnormalities (such as hydrocephaly, cleft palate, meningomyelocele) expressed frustration and upset at facing new conditions in care. In these situations, some nurses offered encouragement and assured the mother that they would support her with care. The following describes an observed moment when a nurse attempts to reassure the mother of a neonate with meningomyelocele. The mother was crying. Through her tears she asked the nurse how to breastfeed her infant and what to do with her back. The nurse kindly faced the mother and nodded. She responded by saying "don't worry, I will teach you how to breastfeed. I will tell you what to do. Don't worry and trust in God" (Nurse7) .This nurse identi ed that mothers needs in that particular moment and subsequently provided her with the help and reassurance she required.
Some nurses would advise the mother to rest when she felt tired, assuring her that she would take care of the neonate in her absence whenever they were free. "I tell the mother that 'I am present here, so drink milk and take a break. I am here for half an hour or an hour. If your infant wakes up, I'll give him milk and wake you up if I need you.' This enables the exhausted mother to rest for half an hour" (Nurse 9).

Supporting Mothers with Reduced Functional Capacity
Some mothers were unable carry out physical cares due to reduced functional capacity. For example, physical function was decreased in mothers who had undergone caesarean sections or had wounds such as vaginal stitches. In these instances, nurses were required to provide primary care of the neonate.
"Changing a diaper is the duty of the mother but sometimes an ill mother, such as one post caesarean section may not be able to attend to all of her infant's cares. In these cases, our nurse assistants are directed to assist the mother with caring for her infant" (Nurse 13).
Post-natal mental health issues such as low mood, depression, anxiety and stress also affected a mother's ability to care for her infant. If depressive symptoms were evident or if a mother was stressed and/or overwhelmed about the clinical condition of her infant, greater support from nurses was required. In these situations, nurses recognized that the mother was struggling and responded by spending more time nursing her infant.
Another example of situations when nurses would provide greater support to mothers was when a mother appeared to have exhausted all options of consoling her upset infant. Often, in these situations the mother was visibly upset. One nurse describes this when she says "Most mothers have trouble calming their neonates. They get distressed that their infant will not stop crying. We check to see if the infants upset is due to a dirty diaper or bloating" (Nurse 14).

Providing Information
Overall mothers reported that they were provided with little clinical information regarding treatment and illness. However, there was some satisfaction around communication regarding certain care practices.
For example, the mother of a neonate with a cleft palate asked the doctor "Can I give my milk to my infant?" The doctor responded by saying "Yes, you can breastfeed, and you have to bend over and your nipples have to ll your infant's mouth. However, if you are unable to do that then alternatively use this bottle and squeeze the end of it to pour the milk into your infant's mouth." (Doctor 2) Additionally, interviews with mothers illustrated that nurses provided guidance when a mother was faced with di culties in caring for her neonate. Mothers in these instances reported satisfaction with the nurse's guidance in taking care of her infant. For example, one mother said "I would pour the milk through the hoses, the nurses would say add the distilled water and they brought distilled water themselves. I asked if I can also footbath with cold water. The nurses said no suggesting to footbath with lukewarm water instead."(Mother 10).

Discussion
Based on the ndings of this study, the themes failure to meet the support needs of mothers and supporting the mothers in certain circumstances elaborated on the cultural model of compassionate support, which will be discussed below 1. Failure to Meet the Support Needs of Mothers Findings from this study suggest that in an Iranian NICU, mothers support needs are not adequately identi ed and subsequently their needs are unable to be met. This failure to meet the support needs of mothers is attributed to a multitude of factors namely lack of human resources resulting in high nursepatient ratios and high doctor-patient ratios and a culture of care where mothers are expected to be primary care providers with nurses in the background.

Failure to Accompany the Mother in the Care
Mothers in the neonatal ward have always wanted nurses to monitor their care due to lack of experience with a neonate and their care requirements as well as unfamiliarity with the clinical environment. This is supported by Bruce and colleagues. [21] Who assert that mothers feel signi cant pressure when taking care of their neonates and they therefore need ongoing communication with the nurse as well as a collaborative care approach. Parents needs for support and guidance from nurses is great and it varies at different stages of their journey [6]. Both Mok [22] and Abuidhail [23] identify considerable gap exists between the level of expected support and the actual support received by mothers. In both these studies mothers felt that they were not supported by the healthcare team.

Assigning Monitoring and Care to the Mother
The present study showed that NICU nurses relied heavily on maternal presence to monitor and care for the infant. This practice where primary care is the responsibility of the mother meant nurses work focused on complex clinical task delivery and overall supervision. Nurses appeared to hold the belief that the mother was primarily responsible for care, however this con icted with their professional responsibilities; nurses are ultimately responsible for care and while supporting the mother with learning new parenting skills.
The ndings of dependence on maternal presence and nurses' primary focus being on technical tasks and interventions is consistent with other studies exploring Iranian NICU nurses practice [24,25]. However, what this suggests is that the scope of nursing assessment, care planning and delivery is arguably narrow. Restricting nursing practice to tasks and interventions limits the ability of whole of person and family-centered care to be delivered.
In this context, Aein et al. [26] Suggest that nursing focus on technical tasks is attributed to a shortage of nurses. Due to sta ng ratios and high patient loads, nurses do not have the time to support and engage in effective, meaningful communication with parents

Inadequate Sharing of Medical Information
The ndings from this study showed that mothers did not receive adequate information regarding their infant's clinical condition. Both medical and nursing staff did not appear to priorities spending time on communication purposes and sharing of information. It was considered by both medical and nursing staff a medical responsibility to discuss clinical details.

Supporting Mothers in Certain Circumstances
The ndings of this study showed that nurses were not indifferent to the emotional stresses of mothers.
There were times when emotional support was provided, such as when mothers were unable to cope due to reduced physical function or poor post-natal mental health. Mothers who exhibited low mood, anxiety, acute stress and grief received a greater amount of emotional support from nurses. The present study showed that nurses would not compel the mother to take care of the neonate if she was unsatis ed with the physical and/or mental condition of the mother or would assist the mother if she had a problem with care. The results of this study illustrate that nursing support in NICU's is not driven by professional commitment but by stimulating human emotions.

Providing Mother-Centered Care Information
In the current study, most of the information provided by the NICU staff to mothers centered on neonate care. Content was speci cally focused on aspects of care mothers needed to provide as opposed to clinical information. Mothers expressed a desire for greater clinical information. This information was mostly provided by nurses. Limitation: In this study, it was not possible to evaluate fathers' support experiences due to the lack of continuous presence of fathers.

Conclusion
Mothers of neonates hospitalised in the NICU have complex support needs including communication, information, education, reassurance and rest. To ensure their support needs are met family-centred care practices are recommended. Implementation of assessment tools that identify mothers' needs during what is a di cult, uncertain and stressful time is also recommended. Barriers to providing support to mothers need to be addressed such as nurse patient ratios and a prevailing cultural paradigm whereby communication is primarily through the doctor. Nurses with their constant presence at the point of care across the continuum of care are best positioned to deliver support and engage in informative, meaningful and timely communication with mothers of neonates in order to meet their individual needs.

Declarations
Ethics approval and consent to participate Ethical approval was granted by the Ethics Committee of Tabriz University of Medical Sciences (Approval IR.TBZMED.REC>2016.789). All authors have signed written informed consent and approved the submission of this version of the manuscript and take full responsibility for the manuscript. The legal guardian of all participants signed an informed consent form that their data could be used for various clinical studies.

Consent for publication
Not Applicable.

Availability of data and materials
The data that support the ndings of this study are available from the corresponding authors upon reasonable request.

Competing interests
No nancial or non nancial bene ts have been received or will be received from any party related directly or indirectly to the subject of this article.

Funding No Funding
Authors' contributions MJ, the corresponding author, PhD, and Assistant professor of Nursing, designed the study, data collection, interpreted the results and revised the manuscript. The rst author, namely, RN, played a role in study conception and design, analysis and interpretation of the data and in preparing and drafting the manuscript, and HH, MA and AB Participated in the design of the study, and interpretation of the data and critical revision of the paper.
All authors listed on the manuscript, approved the submission of this version of the manuscript and take full responsibility for the manuscript.