Experience of Mothers Having Preterm Newborns in Neonatal Care Units

Background: Preterm births are vulnerable to morbidities and require hospitalization in the neonatal care unit (NCU). The situation is stressful for mothers influencing their attachment and care to the newborns. Therefore, this study was conducted to explore the experience of mothers having preterm newborns in NCU. Methods: The qualitative study was conducted among purposively selected 13 mothers of NCU admitted preterm infants at Tribhuvan University, Teaching Hospital. Data was collected using in-depth interview. Colaizzi content analysis method was used for data analysis. Results: Among 13 mothers, 8 were primipara, 25-30 years, homemakers; 6 had Bachelor or above education; 11 had ANC visit > 4 times. Ten infants were very preterm (< 32 weeks gestational age), 11 have very low birth weight (< 1500 gram), 9 born by caesarian section and stayed NICU for 7-14 days. Study identified 5 themes and 18 subthemes: loss of control (fear and anxiety, distress towards pain and suffering, guilt feeling, hopelessness); sense of difference (newborn’s appearance, needs and problems, breastfeeding and parental roles); care of newborn (trust to nurses, confidence and emotional attachment with care involvement,), support for coping (support from family, nurses and other mothers); and difficulties faced (distance to NCU, inadequate guidance and information, and lack of supportive environment) Conclusion: The hospitalization of preterm newborns in NCUs was usually stressful situation for mothers. Their positive experience and coping was related with provided guidance support and involvement in newborn care. Therefore, nurses working in NCU should consider these care components in their practice.


INTRODUCTION
.1% of births are born preterm (before 37 weeks of gestation) 1 whereas 14% in Nepal. 2 As born immature, they are vulnerable to morbidities and mortality. Therefore they require hospitalization for a significant period in neonatal care units (NCUs). 3 Retrospective study done in 2011 in TUTH indicated hospitalization of (45%) of infants born preterm. 4 Preterm birth and hospitalization are stressful for mothers and family. 5,6 They experience emotions like fear, anxiety, uncertainty, distress and loneliness. Because of early and prolonged separation, and special care needs of the infant, these mothers feel powerlessness and lose their confidence for maternal roles. 7,8 Enabling maternal role with care and support is essential to ensure proper care of newborn after NCU stay. 9 Understanding their experience is essential to plan effective care and support to them. 10 The information is limited in the context of Nepal. Therefore, this study was conducted to find out the experience of mothers having preterm newborns in NCUs.

MATERIALS AND METHODS
To explore the experience of mother, a qualitative phenomenological study was done in neonatal care units (both neonatal intensive care unit and neonate where) of the Tribhuvan University Teaching Hospital (TUTH) from June to August 2017. The population of the study were mothers of preterm newborns who were admitted in the neonatal care units. Mothers having preterm newborns in neonatal care units for more than 1 week and were willing to express their experience were selected purposively. Mothers were recruited until data saturation (total 13 mothers). The interview schedule was developed to assess socio-demographic information of the mothers and newborns. In-depth interview guide having open ended questions was developed to explore mothers' experience. Ethical approval was taken from the Institutional Review Committee (IRC) of the Institute of Medicine, Tribhuvan University. Permission was taken from the hospital authority. Written informed consent was taken from the mothers of the preterm newborns for their participation as well as for recording of their views. Anonymity, confidentiality was maintained.
The interview was started as a simple conversation to find out the socio-demographic and health characteristics of the newborns and mothers. Conversation was gradually directed to in-depth interviews to explore their feelings and experience. Interview was conducted by the researchers themselves in the room provided in the neonatal unit during the convenient time of the mothers. Each interview was last approximately 40 to 60 minutes. Data collection was continued until there was no information and a new code of the interviews can be extracted (until data saturation).
Colaizzi's content analysis method was used to analyze the qualitative data. Following this method, audio records of each interview was transcribed, translated, read and reviewed several times to obtain general sense about the content. From the transcript, significant statements that pertain to the phenomenon under study was extracted. Those statements were recorded on a separate sheet noting their page number and line numbers. Meaning was formulated from these significant statements. Those formulated meanings were sorted into theme clusters, and finally, the main theme was abstracted at the end according to conceptual and meaning similarity. Some measures were used to ensure the trustworthiness of the qualitative data. Proposal reviewed and presented among the research experts according to the requirement of the University Grants Commission. To maintain the credibility of the data, in-depth interviews were done for around one hour (prolonged engagement). Data analysis was done involving both researchers. After formulation of the theme and sub-theme, researchers returned to two study participants to ensure the reflection of the meaning of the theme as they expressed (member checking). Similarly, findings were adequately described (thick description) and triangulation with literature was done.

RESULTS
Socio-demographic information of 13 mothers shows that the age of the mother ranged from 20-34 years, one mother was 20 years and 2 mothers were more than 30 years. Regarding educational status, 2 mothers were illiterate, others have primary to master level education. Eight mothers were home makers and remaining were daily wages worker to university lecturer. Ten mothers belonged to the nuclear family and 2 mothers had their husbands abroad. Maternal obstetric information shows that 8 mothers were primipara, 1 mother had twin delivery, 1 had previous preterm delivery. Similarly, 11 mothers had >4 antenatal check-up during this pregnancy, 9 had operated delivery and 10 preterm birth was related to pregnancy induced hypertension (table 1).
Similarly, demographic information of the newborns shows that their gestational age ranged from 25 to 34 weeks; 7 were < 32 weeks. All the newborns had low birth weight (<2500grams); birth weight ranged from 950 grams to 2200 grams and 8 were <1500 grams. The minimum hospitalization duration was 7 days. Newborns had more than one health problem while admitted in NCU (table 2).

1) Loss of control:
The theme loss of control was formulated based on 4 different theme clusters: fear and anxiety, distress towards pain and suffering of the newborns, guilt feeling, and hopelessness.

Fear and anxiety:
Fear and anxiety were the major emotions of the mother during newborns admitted to NCU. Mothers' anxiety was related to their perception of serious condition and uncertainty of newborns' survival. Unlike term birth, mothers also shared negative experiences of separation of newborn immediate after birth. Hopelessness: Mothers felt hopelessness frequently when they were informed about the detoriation of the newborn's health condition. Mother whose newborn in critical condition said; The condition has not been improved but seems detoriating so I have lost my hope' (P12)

Difference in needs and problems:
Newborns were very small up to 950 grams at birth. Mothers felt that their newborns were suffering from serious health problems like respiratory problems, infection, jaundice. Some mothers expressed difficulties related to the expenses required for the treatment. They perceived that their newborns required extra therapies and intervention.

Mothers' expressions like
My baby had difficulty in breathing and many problems, he was given saline, injections, oxygen ….' (P8).

Immediately after delivery my baby was given injection which costs around NPR. 11000. The cost and expenses are like flowing water in the river. We have taken a loan to manage the situation' (P5).
Altered breastfeeding: All the mothers felt the difference in their breastfeeding role. Newborns were unable to suck breast milk and fed with expressed breast milk (EBM) Therefore, mothers' role was to supply EBM for their newborns. Some mothers suffered from breast engorgement as their newborns were unable to feed initially. While separated from their infants, the mother breastfed other normal newborns in the postnatal ward. Mothers shared My baby couldn't feed on my breast. After the third day of birth, he was given expressed breast milk (EBM). So, I am providing EBM for my baby (P5, P9).

I used to breast feed other babies and felt satisfied feeling like feeding my baby' (P7).
Altered parental role: They felt distress towards their passive role compared with the mothers having normal newborns. Mothers who were in the ward together with mothers having normal newborns felt more distress. Mothers shared that

Theme clusters Formulated Meanings
Difficulties Faced

Distance of mothers' room and NCU
• Difficulty to visit and care newborn, frequently • Difficulty for mothers having operative delivery • Difficulty to visit at evening, and night

Need for information and guidance
• Guidance for care and identification of illness signs • gradual providing negative information • Information to mothers about danger signs and their management

Lack of supporting environment in NCU
• Negative behavior among few nurses • Unable to get response from nurses • Scolding for risk of infection 3. Care of Newborns : As newborns were separated, care of the newborn was the main concern for the mothers. Therefore, care of newborn theme included three subthemes: trust to nurses for newborn care, care confidence, and emotional attachment through care involvement.

Trust to Nurses for Newborn Care:Mothers were
worried and in doubt about the newborn care provided in NCU in the beginning. Later when they saw the newborn care provided by nurses with competency and affection, they appreciated care provided to their newborns. Mothers shared their experiences like There is no place to feel doubt about the care they have given to our baby (P4) They cared for our babies as like they were their own babies (P8).

Care confidence with involvement in infant
care:According to mothers, nurses guided and involved the mothers in newborn care like feeding, KMC, hygiene care before shifting newborns in general ward. They felt confidence in newborn care with involvement in newborn care. According to mothers, newborn care ability was one of the criteria to get their newborns with them from NCU.
At the beginning, I was not known to even hold my baby.

Support for coping :
During hospitalization of their newborns, mothers felt support from their spouse and family and health personnel including nurses to cope with the situation. They also felt support from mothers having similar problem.
Family Support: Husbands and family members were the main source of support and reassurance during a stressful situation. Some mothers had their husband far for the work. Such a situation, near family members like sisters, in-laws were taking care of them. Family support was important for the mothers in hospital, as well as for managing older children if any. Mothers who had no family support to look after elder children had difficulty coping. One mother who had left 2 older children far in the village expressed My only concern is my elder daughters who are staying alone at home, nobody is there to look after them so I want to go home as earlier as possible (P5).
Mothers who were residing Kathmandu from far (outside the valley) had inadequate family support compared to local residents as delivery was occurred before the expected time.
Nurses' Support: Mothers felt comfortable with polite manners and supportive behaviour shown by nurses. Nurses' providing Information and emotional support helped them to cope the situation. The mother expressed Their babies were improved and they went home similarly my baby will also be alright one day and I will also go home with my baby' (P7).

Difficulties Faced :
According to mothers, they experienced difficulties related to distance between mothers' room and NCU, guidance and information need and lack of supportive environment in NCU.

DISCUSSION
Mothers in this study experienced fear, anxiety, hopelessness, feeling of guilt, and hopelessness. Anxiety was related to the appearance, condition, and outcome of the newborns, altered maternal role. Mother expressed that their newborns were different and in a serious condition requiring extra treatment, care, and expenses. Systematic reviews and the qualitative study revealed similar findings. 5,6,10 Similar to previous studies, mothers in this study were distressed for pain and suffering of their newborns and helpless to protect from pain and suffering. 6,11 Similar to the study by Sarapat et al., 2017, mothers of experienced altered breastfeeding roles characterized by providing EBM for their newborn. 13 Supporting the study finding of Russel et al., 2014, mothers in this study felt secured when they saw care provided by nurses with competency and affection to their newborns. Mothers appreciated the nurses' guidance, encouragement, and support for their involvement in newborn care. 12 Their involvement in newborn care was related to emotional comfort, and attachment with their newborns. 5,12 The main source of support to cope with the situation was supported in various forms from their husband and family. Likewise, supporting previous studies, they felt reassured and supported by sharing with parents having a similar problem. 13 Mothers in this study desired minimum distance from their room to NCU for more frequent visits and involvement in newborn care. Some mothers felt inadequate response and support by nurses because of the busy work schedule and personal attitude. They expected the supportive environment in NCU with positive behavior by nurses and other health personnel, adequate response for their queries in such stressful periods. Mothers expressed the need for adequate guidance and support for learning preterm newborn care including identification of illness signs. The findings of the previous studies reported the need for adequate information, guidance, and involvement for mothers to be prepared for preterm newborn care. 9 Mothers also anticipated receiving information especially negative information related to newborns timely and gradually with preparation by health professionals. 6,14

CONCLUSION
Having the preterm newborn in NCU was a stressful experience for mothers. The stress and anxiety were the result of exposure to different stresser related to the condition and survival of the newborns; therapy requirements and their expenses; and alteration in maternal caring roles. Their positive experience was related to nurses' emotional, informational support as well as guidance and support for involvement in newborn care. Therefore, nurses should deal with supportive behaviour and provide adequate information. Mothers should be guided, and supported for involvement in newborn care in NCU to minimize their negative experience and for better neonatal and maternal outcomes.