Eighteen nurses, five physicians 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: Insufficient attention to mothers’ support needs and provision of support in special circumstances (table 2).
Table1: Demographic Characteristics of Participants
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Sex
|
Age/year
|
marital status
|
Education
|
work experience
|
Job status
|
Shift
|
Male
|
Female
|
married
|
single
|
physician (N=5)
|
4
|
1
|
(35-45)
|
5
|
0
|
Neonatal Specialist
|
10-25(Y)
|
Official=5
|
Day=5
|
Nurse (N=18)
|
0
|
18
|
24-49
|
12
|
6
|
Bachelor of Science= 18
|
1-19 (Y)
|
Official=12
Contractual=6
|
Day=2
Rotation =16
|
Mother (N=21)
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Number of Child
|
Age/year
|
Marital status
|
Education
|
Duration of infant hospitalization/ day
|
Job status
|
Nullipara
|
Multipara
|
married
|
single
|
16
|
5
|
20-35
|
21
|
0
|
Primary education=4
Secondary education=11
Bachelor of Science=6
|
7-60
|
Housewife=18
Employed=3
|
Table 2: Primary and Subthemes of Study
Primary Themes:
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Insufficient attention to mothers’ support needs
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Support in special circumstances
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Subthemes:
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Inadequate accompany the mother in Care
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Reassuring the mother
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Assigning monitoring and care to the mother
|
Supporting mothers with reduced functional capacity
|
Inadequate Sharing of medical Information
|
Providing Information
|
Insufficient Attention to Mothers’ Support Needs
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 insufficient attention to mothers’ support needs, three sub themes emerged. 1. Inadequate accompany the mother in care. 2. Assigning responsibility of care to the mother and 3. Inadequate sharing of information.
1.1. Inadequate Accompany the Mother in Care
"I used to say just come and stand with me while I change the nebulizer water or the diaper" (Mother 1).”
“Because I did not know how to breastfeed and was scared to hurt my infant, I asked the nurse, am I caring for my infant properly? (Mother 3)”
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 because we are so busy" (Nurse 14).
1.2. Assigning Monitoring and Care to the Mother
“I breast fed my son in the morning and then he went to sleep. Now he won’t wake up which is worrying. the nurse told me to knock on his feet to get up, but he fell asleep again. I feel strongly that the nurse must examine my infant. Maybe something has happened to him ” (Mother 9).
"When I'm not present, no one cares for my neonate. When I'm asleep, 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 physicians, 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. Physicians 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 physician to finish medical rounds. One of the physicians said:
"Because after visiting the babies, I have to attend medical student education classes, so I have little opportunity to visiting , so I do not have enough time to answer all the questions of mothers" (physician 3).
Most mothers would seek out the physician when they had finished rounds and were leaving the NICU to have their questions answered. In these instances, the physician's brief answer to posed questions was not satisfactory. For example,
" I show the physician the chest X-ray images and ask for further explanation on my infant’s medical condition. The physician responds by simply saying his lungs are infectious. I would expect him to explain more. "(Mother 5).
Most tests are specialized and the mother is not able to understand them, so I do not see the need to explain them in more detail, and as soon as the mother knows there is nothing to worry about. Most tests are specialized and the mother is not able to understand them, so I do not see the need to explain them in more detail, and as soon as the mother knows there is nothing to worry about.
“The mother wants me to interpret the results of the lumbar puncture test. Well, this test is a specialized test. So, I tell the mother that she needs to ask the physician about this specialized test. we do not have the knowledge to interpret findings” (Nurse 14).
“We are told what the neonate’s medical problem is. the nurse is not allowed to announce the result of ultrasound. we cannot precisely interpret. it is the physician's duty to interpret the test” (Nurse 3).
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. For example, the method of tying an infant diaper that had undergone bladder exstrophy surgery is different from a healthy infant, so a multipara mother had trouble tying her infant's diaper. 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 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 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 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 physician
"Can I give my milk to my infant?” The physician 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." (physician 4)
Sometimes physicians prescribed specialized care to teach mothers by nurses
"The physician told the resident" write teaching chest physiotherapy, strengthening sucking, massaging and feeding gavage to mother by nurses, because we may have to discharge infant with NGT. ." (physicianr 3)
Additionally nurses provided educational guidance when a mother was faced with difficulties in caring for her neonate.
"Our mothers are afraid to give syrup to their babies, so we remind mothers to dilute medications such as multivitamins, keep their heads up, and give them slowly. " (Nurse 1)
Interviews with mothers illustrated that Mothers in these instances reported satisfaction with the nurse’s education in taking care of her infant. For example, one mother said:
The nurse .. taught me the kangaroo care and massage on the mannequin in the training class "(Mother 9). “I would pour the milk through the tube, the nurses would say add the distilled water and they brought distilled water themselves. "(Mother 10).