Eighteen nurses, five doctors and twenty-one mothers participated in the study. The demographic characteristics of participants are presented in Table 1. Two hundred and fifty 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 (table 2).
Table1: Demographic Characteristics of Participants
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Age/year
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marital status
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Education
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Job status
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married
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single
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Doctor (N=5)
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(35-45)
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5
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0
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Neonatal Specialist
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Official=5
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Nurse (N=18)
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24-49
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12
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6
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Bachelor of Science= 18
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Official=12
Contractual=6
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Mother (N=21)
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20-35
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21
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0
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Primary education=4
Secondary education=11
Bachelor of Science=6
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Housewife=18
Employed=3
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Work experience in NICU
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6 month-18 years
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Duration of infant hospitalization/ day
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7-60
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Table 2: Primary and Subthemes of Study
Primary Themes:
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failure to meet the support needs of mothers
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support in special circumstances
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Subthemes:
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Failure to accompany the mother in care
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Reassuring the mother
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Assigning monitoring and care to the mother
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Supporting mothers with reduced functional capacity
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Inadequate Sharing of medical Information
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Providing Information
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Failure to Meet the Support Needs of Mothers
Data from observations and interviews showed two things. Firstly, that mothers of neonatal babies in the NICU had complex support needs. Secondly, that these support needs were not adequately met. Within this theme of failure to identify and meet the support needs of mothers, three sub themes emerged. 1. Failure of the nurse to accompany the mother in care. 2. Assigning responsibility of care to the mother and 3. Inadequate sharing of information.
1.1. Failure to Accompany the Mother in Care
Although nurses believed that supporting mothers was necessary, resource constraints, specifically staffing, meant that they did not have the capacity to provide such supportive careOne nurse demonstrates the inner conflict this causes when she says "Mothers, especially those who are from the country, are under significant pressure. It is difficult 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).
1.2. 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 confidence in experienced mother’s ability to perform simple cares. Often in these cases, nursing presence was minimal, for example, to provide the mother with specific clinical instructions. Some of the experienced mothers were frustrated and dissatisfied 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 confidence 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).
1.3. Inadequate Sharing of Medical Information
Mothers felt that medical staff, specifically doctors, did not spend enough time sharing clinical information. They felt that there was not sufficient 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 finish medical rounds. Most mothers would seek out the doctor when they had finished 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 example, "The doctor answers my questions but I am not convinced. I show the doctor the chest X-ray images and ask for further explanation on my infant’s medical condition. The doctor responds by simply saying his lungs are infectious. I would expect him to explain more. For instance, why does he have an infection? Why does he have this persistent cough? Why hasn’t he been cured yet? "(Mother 5).
Support under Special Circumstances
As previously described, nurse patient ratios appeared to be significant 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.
2.1. 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 identified 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).
2.2. 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).
2.3. 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 fill 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 difficulties 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).