A journey filled with emotions--mothers' experiences of breastfeeding their preterm infant in a Swedish neonatal ward.
Abstract: The study took place in a 10-bed neonatal ward in a hospital in the south of Sweden and includes mothers having given birth to a preterm infant born before the 37th week of gestation. The aim of the study was to illuminate mothers' experiences of breastfeeding a preterm infant in a neonatal ward. Data collection includes written protocols from twelve mothers. These protocols were analysed thematically. The results indicate that the mothers should be offered a private place where they can breastfeed or express breastmilk, and that the breastmilk should not be placed in a shared area. The mothers described that they did not want to be separated from their preterm infant during the night. Finally, they also pointed out the importance of support from the health professionals for establishing an exclusive breastfeeding regime.

Keywords: breastfeeding, experience, mother, preterm infant
Article Type: Report
Subject: Infants (Premature) (Food and nutrition)
Infants (Premature) (Social aspects)
Infants (Premature) (Care and treatment)
Mothers (Social aspects)
Mothers (Health aspects)
Mothers (Beliefs, opinions and attitudes)
Breast feeding (Social aspects)
Breast feeding (Health aspects)
Postnatal care (Research)
Authors: Bjork, Maria
Thelin, Anna
Peterson, Inger
Hammarlund, Kina
Pub Date: 03/01/2012
Publication: Name: Breastfeeding Review Publisher: Australian Breastfeeding Association Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2012 Australian Breastfeeding Association ISSN: 0729-2759
Issue: Date: March, 2012 Source Volume: 20 Source Issue: 1
Topic: Event Code: 290 Public affairs; 310 Science & research
Geographic: Geographic Scope: Sweden Geographic Code: 4EUSW Sweden
Accession Number: 291617067
Full Text: [ILLUSTRATION OMITTED]

INTRODUCTION

Approximately 110,000 babies are born every year in Sweden. Of these, about five percent are born prematurely, which means that the baby is born before the 37th week of gestation (National Swedish Board of Health and Welfare 2009). However, although there has been a significant improvement in neonatal care with more children surviving (Stoelhorst et al 2005), the experience of the premature birth temporarily shatters parents' ideas of their dream child. The initial period with their child turns out to be different from their plans as they have to spend a lot of time with their baby in the neonatal ward (Jackson 2005) trying to attain functional breastfeeding (Flacking et al 2006).

Among the industrialised countries, Sweden has one of the highest durations and rates of breastfeeding (Nyqvist & Kylberg 2000). How mothers of full-term infants experience breastfeeding is discussed in several studies. For example, a metasynthesis done by Nelson (2006) showed that mothers who were able to provide breastmilk for their infants felt very satisfied and needed, while expressing a desire for support from a variety of sources. Dykes and Williams (1999) found that mothers described initial doubts about their ability to breastfeed. Despite these feelings they wanted to try, although it was seen as a challenging journey, especially during the first 6 weeks. During this period some gave up and started with artificial milk. Schmied, Sheehan and Barclay (2001) found that mothers had different feelings toward breastfeeding. They thought it was the best nutrition for the baby and described it as a comfortable, natural and intimate moment with their child but the act of breastfeeding could also be experienced as frightful, painful and disgusting. Mozingo and colleagues (2000) found that when breastfeeding did not work out and mothers decided to terminate it, feelings of guilt, shame and failure could appear, together with relief.

Other studies describe how mothers experience breastfeeding a preterm infant. According to Flacking, Ewald and Starrin (2007) the regime at the neonatal unit (NU) has its focus on breastfeeding and mothers are expected to breastfeed. Flacking et al (2006) found that mothers described the process of breastfeeding as a training camp connected with routines such as scheduled feeding and weighing, but also as an action in which they felt important for the child. Breastfeeding was also described by Boucher et al (2011) and Kavanaugh et al (1997) as an opportunity to feel close to the baby, and to form an attachment to the baby.

Becoming a mother of a preterm infant easily turns life upside down. For staff to be able to help and support these mothers with their breastfeeding, it is important to illuminate mothers' experiences. Although, studies have focused on mothers' experiences of breastfeeding and some studies even focus on breastfeeding the preterm infant, this needs to be further explored, especially in relation to breastfeeding on the neonatal ward. Therefore, this study aims to illuminate mothers' experiences of breastfeeding a preterm infant on a neonatal ward.

METHOD

Design

In order to get in touch with the mothers' lived experience of breastfeeding their preterm infant in a neonatal ward, this study used protocol writing as a way of collecting lived experience descriptions (Van Manen 1997). Van Manen's protocol writing is ideal for the empirical realm of everyday lived experience. The mothers were asked to write down their personal experience as they had lived it. The guidelines written to help the mothers in this process were tested on two mothers who had each given birth to a preterm infant. They fully understood the instructions and each wrote a rich lived experience description.

Setting

The study took place at a 10-bed neonatal ward situated at a local hospital in the south of Sweden. The ward cares for children born at gestational week 27+0 or later and are certified according to Baby Friendly Hospital Initiative (BFHI) and use the 10 steps to successful breastfeeding (WHO 1989).During 2008, 2040 babies were born in the catchment area. Of these, 225 (11%) were signed in at the neonatal ward. At the time for discharge, 79% of these babies were exclusively or partly breastfeed, the latter meaning that they were breastfed at mealtimes with milk substitute added if needed.

Participants

The inclusion criteria of this study were that the neonate was born as a preterm infant (before gestational week 37), had been cared for in the neonatal ward, had been exclusively or partly breastfeeding at discharge, had been at home for a month or more, and that the mothers were aged 18 or more and that they could speak, write and understand Swedish. During a 2-month period in 2009, 20 mothers who fulfilled the inclusion criteria were asked to participate in this study. Twelve mothers were included in it, all of whom were either married or cohabited with the baby's father. Their ages ranged from 22-40 years (median, 30.5). Two of the mothers had 9 years of school education, three had further secondary school education and seven had a university education. Five of the mothers had one or more older children at home. The preterm infants were born between gestational weeks 27 and 36 (median 31 weeks) and had been discharged from the neonatal ward 2-7 months previously (median, 5 months).

Procedure

Two designated nurses, who were not part of the research team, contacted by telephone the 20 discharged mothers who fulfilled the inclusion criteria. The mothers were given both verbal and written information about the study. Letters were sent to the mothers with information about the study, written informed consent, a sheet with demographic data, a sheet with an open question, empty sheets to write on and a stamped return envelope. All of the sheets were marked with a code; the coding list was available only to the designated nurses. In the open-ended question, all participants were invited to relate their experiences of breastfeeding their preterm infant in the neonatal ward. They were asked to describe their experiences as fully as possible as well as what they thought, felt, needed or wanted in relation to their experiences. The written protocols were returned to one of the authors (IP). They were between half and four and a half handwritten sheets long (median two and a half sheets).

Analysis

To analyse the written protocols (lived experience descriptions) a thematic analysis, 'a search for meaning' (Van Manen 1997) was conducted. When people experience something, for example when watching a movie, they have, according to Van Manen a desire to make meaning (Van Manen 1997, p. 79). He further states that without desire there is no real motivated question (Van Manen 1997, p. 79). In this analysis we were trying to understand these mothers' experiences of breastfeeding their preterm infant and to ask ourselves 'what is its meaning?' We started the analysis with a holistic approach in which the written protocols were read through several times in order to get an overall picture and to become familiar with the content. According to the aim of this study sentences and phrases were highlighted from the texts. These were then organised into structures of experiences. According to Van Manen (1997) structures of experiences can be described as the experiential structures that make up the experience. These were then condensed into a written text and formed into themes which can be described as knots in the web of these mothers' experiences. The whole process can be described as an iterative cycle of revisiting the written protocols several times during the analysis. The analysis resulted in five themes.

Ethical considerations

Research involving people should be conducted according to accepted ethical guidelines and rules. This study followed the principles of research ethics described by the Swedish Medical Research Council (MFR 2003). This means that the four ethical principles; respect for autonomy, beneficence, non-maleficence and justice were considered (Beauchamp & Childress 2001, MFR 2003). The information for the mothers was written in easily understandable terms. After they had been given both oral and written information and time to consider their possible participation, a written informed consent was obtained. The mothers were informed that they could withdraw from the study whenever they wanted, without giving any explanation and without any effects on their future care. They were guaranteed confidentiality. The head of the clinic as well as the head of the ward gave their verbal and written approval for this study.

RESULTS

Five themes emerged through the analysis. 'To start the breastfeeding journey--the first important drops of milk', 'To feel exposed and compared with others', 'To be both stressed by and addicted to the weighing scales', 'To need support from the health professionals' and 'To blame yourself when breastfeeding is not working'.

To start the breastfeeding journey--the first important drops of milk

When mothers start their breastfeeding in a neonatal ward, they mostly begin to pump out the milk as the preterm infant is too weak to suck by themselves. When they start to pump the milk flows slowly and in few drops. Mothers experience it as comforting to get confirmation from the health professionals that this is normal. They also need to be assured that every drop of milk is valuable and so be encouraged and motivated to continue to pump out their milk. The drops of milk are then given to the preterm infant through a feeding tube.

I started to pump, but not many drops came at first. At this point the staff were very nice and told me that it was totally normal and that I shouldn't be sad if nothing came during the first days. He got my pumped drops in a feeding tube together with milk substitute. And as my milk production increased, the amount of milk substitute decreased.

In this fragile process the mothers felt that it was emotionally difficult not being able to share the room with their preterm infant. The baby sleeping in the neonatal ward and the mother in the maternity ward made the nights a time of deep loss for mothers. They wanted to be able to pick up their baby and breastfeed during the night. However, as they were separated, they did not know when their babies were awake and needed them.

I found it difficult that I could not have my son in the room I slept in, not knowing when to breastfeed. It was really hard to go to bed in another room not being able to wake up when my son needed me or knowing when he wanted my breast.

The support the mothers describe that they need from the health care professional is to be woken up during the night when their baby needs to be breastfed.

To feel exposed and compared with others

The mothers talk about how, when they are breast pumping, they are not given the possibility of sitting on their own in a private area. They experience vulnerability when breastfeeding or expressing breastmilk in front of other people and thus find it difficult to relax. The vulnerability is described in words such as 'feelings of guilt and frustration'.

I thought it was hard to sit in the ward and express breastmilk in public. It felt strange and it led to feelings of guilt to take out ones breasts and try to put the funnel in position etc. The environment was perhaps not one of the most relaxing.

The mothers suggest that the health professionals put up screens or divide rooms with drapes, in order to decrease this vulnerability and increase the feeling of privacy.

When the mothers had expressed breastmilk, the bottle was put in an open rack together with bottles from other mothers. The bottles became an object for comparison. Feelings of hopelessness and failure could emerge if a mother did not succeed in expressing enough milk.

I know I became jealous of another mummy who constantly put filled bottles on the bench and I felt 'bad' for not being more successful. I know that small amounts are better than none, but it still felt like failure.

To be both stressed by and addicted to the weighing scales

Several mothers describe how hard it is to estimate the amount of breastmilk the baby has sucked during feeding. They rely on the scales and weigh the baby instead of having confidence in their own feelings as a mother.

However, it became a bit harder when he started to breastfeed a lot instead of using the tube and I needed to estimate how much he sucked in for himself so that the amount of compensation was right. We weighed him, before and after every meal. This was a bit annoying and stressful, and I became totally absorbed in the scales, and started thinking how we could weigh him at home because you could not borrow one.

The mothers describe the scales as something they became addicted to. They use words such as 'poisoning' when talking about them. They also see the weight gain for the preterm infant as a kind of race in which they compete with each other.

To need support from the health professionals

For the mothers it was important to be supported by the health professionals during the breastfeeding process. Their experience and advice seem to be indispensable for success.

I felt in the beginning that it was very important to have all the support and back-up one could get to start the milk production and breastfeeding. You needed to know every trick.

The mothers needed the health professionals to calm them down when their preterm infant was crying during breastfeeding, otherwise feelings of panic could easily occur. If the staff stayed with the mother, chatted with her and calmed her down, she experienced it as an important act of caring. Furthermore, the mothers described how they felt greatly supported by the health professionals when they gave them a pep talk and encouraged their breastfeeding. Advice of a more practical nature like dropping some milk in the preterm infant's mouth before putting in the nipple and advice about breastfeeding positions was also of great help.

On the other hand there is, according to the mothers, a balance between, on the one hand, support and advice, and, on the other hand, letting the mother 'stand on her own two feet'. It seems important that the health professionals are sensitive to when a mother feels she can handle breastfeeding. They need to step back and focus on supplying an atmosphere of presence and calmness and so contribute to a feeling of security, letting the mother breastfeed alone.

It was very positive that the health professional was so calm and encouraging but not too pushy and stayed in the background. It is important that they step forward now and then and give advice but at the same time let me try on my own.

There are nevertheless several narratives where the mothers experience the need for more support from the very beginning of the process, when the expressing of breastmilk starts. For example, they feel insecure about when and how often they should express breastmilk during the night.

It would have been great if the health professionals had encouraged me more often to go out and express breastmilk.

I did not really know, so instead my priority was to just sit with my baby. Looking back I feel that I should have expressed more breastmilk to start the production better.

To blame yourself when breastfeeding is not working

Several mothers describe how when breastfeeding is not working they accuse themselves. They turn the failure towards themselves leading to feelings of guilt and being useless. This filled them with sadness.

The baby tried to get a grip of the nipple but could not get a proper one. As a mum I felt sad and thought it was something wrong with me.

Feelings of disappointment due to the non-functioning breastfeeding make the mothers ask themselves if they really have tried hard enough or if they could have done more.

All together I have felt a big disappointment about the hassle connected with the breastfeeding. Sometimes I wonder if from the beginning I understood its importance. Would I then have been more insistent? I ask myself, could I have expressed breastmilk more often? Did I really do my very best?

At the same time there were mothers who describe that they trust their preterm infant's instinct for breastfeeding. This made them less nervous and they could relax and let the baby be 'in charge of the breastfeeding'.

With some arrangement with pillows and so on it started to work. My son started to look for the nipple and suck. Even though it was not for a long time I was at that moment thinking 'Yes he knows what to do'. And then the nervousness disappeared.

For the mothers to put trust in the preterm infant's own ability seems to decrease the pressure on them. When she knows that the baby has the instinct and knows what to do, it reduces her nervousness and defuses the situation. She can now put more focus on the baby itself and not feel that the responsibility lies solely on her. She sees herself and the baby as a unit that will manage breastfeeding together. This attitude decreases feelings of guilt.

DISCUSSION

In this study it was found that it was of great significance for the mothers to be encouraged and motivated by health professionals to express breastmilk, even though only a few drops came during the first few days. For the mothers it can be frustrating to sit and use the breast pump when the result is nothing or very little. It is therefore important that health professionals

stress to the mothers that these first few drops have a great nutritional value for their baby. The mothers need to be told that it is not the amount of milk that matters from the beginning; instead it is their will to express breastmilk so they can enhance functional breastfeeding later. If the mothers can understand that these drops have a nutritional value one can also say according to Stjernqvist (1992) that giving breastmilk to a preterm baby can be seen as an important action of great symbolic value. Kavanaugh et al (1997) as well as Boucher et al (2011) found that mothers expressed that they knew that breastmilk was the healthiest nutrition for their preterm baby and that they were not sure that they would have struggled so much to make breastfeeding work if they had given birth to a full term baby. Nystrom and Axelsson (2002) found that mothers felt emotionally poor when separated from their preterm babies during the first week of life. This is in agreement with findings from this study that showed that the mothers felt it was hard being separated during the night. Family-centred care practised according to Newborn Individualised Development Care and Assessment Program (NIDCAP) aims to provide the child with appropriate stimulation during the first period of life in order to facilitate the infant's neurological maturation and to promote development. The parent is seen as the most important person in the baby's care and as their primary caregiver (Als 1998, Butler & Als 2008, Westrup et al 2002). Mothers whose preterm infant received care based on NIDCAP perceived more closeness to their preterm infant and felt more supported by the health professionals than those whose preterm infants received conventional neonatal care (Kleberg et al 2007). Mothers in this study described feelings of deep loss when not being able to breastfeed and at having no contact with their baby during the night. Based on NIDCAP, as well as the results from this study, a recommendation can be that the mother and the preterm baby should be able to share a room.

Funkquist, Tuvemo, Jonsson, Serenius and Nyqvist (2010) found that test weighing before and after breastfeeding may help infants to attain exclusive breastfeeding earlier. On the other hand, this study as well as that of Flacking et al (2007) found that mothers can find the weighing stressful. The mothers sometimes rely entirely on the weighing and describe that they 'get addicted to the scales'. Therefore it can be important for the health professionals to encourage the mother in the feeding process to feel confident in her own feelings and ability to connect with the baby.

Becoming a mother of a full-term infant offers the possibility of sitting at home in a calm environment breastfeeding. With a preterm infant the mother has to breastfeed or express breastmilk in a neonatal ward. Mothers in this study describe how sitting in a more public area when expressing breastmilk and breastfeeding results in them comparing themselves with other mothers in regard to amounts of breastmilk, as well as feeling exposed to other people. These experiences can result in feelings of hopelessness and failure. Nelson (2006) found in her metasynthesis that mothers who breastfed full-term babies also experienced discomfort when breastfeeding in front of other people. The mothers in this study had the same problem when breastfeeding or expressing breastmilk in public area, ie the ward, as described by Nelson (2006). In addition to this they also experienced that their breastmilk became an object for comparison. Flacking et al (2007) describe that mothers experience that they had to get a result, that is to say produce a certain amount of breastmilk, as the preterm infant's intake of breastmilk was strictly assessed by the health professionals. According to McGrath et al (1993) the self-esteem of mothers of preterm infants was found to be weak compared to those of full-term ones. To sum up, it is important for health professionals not to push and stress the mothers with their breastfeeding but to meet each mother as a unique individual.

Studies describe how mothers of preterm infants often express feelings of guilt that they had not been able to retain the baby in their uterus (Trause & Kramer 1983). Mothers also feel grief over not having experienced the last period of pregnancy, they lost the full-term baby, as well as feeling that life was put on hold (Flacking et al 2006). These results can be in line with this study which shows that when breastfeeding did not work as expected, mothers easily blamed themselves. Therefore, to be able to help mothers unburden their feelings of guilt it is important that the care involves presence, openness and empathy. It is recommended that care starts from each mother's life world, asking her about her own experience with breastfeeding (Dahlberg & Segesten 2010).

It seems important for health professionals to be aware of the need for the mother, the preterm infant and the health professionals to work together as a unit. When the mother feels that the responsibility lies solely with her, she experiences more stress and vulnerability. However, if she can be assured that the baby has an instinct to breastfeed and will 'help her', that can reduce her burden. This is in accordance with Nelson (2006) who describes what she would call a maternal-infant capacity. This means that mothers discovered both their own body's capacity for producing breastmilk and their infant's competency to participate in the breastfeeding process.

Lupton and Fenwick (2001) found that power struggles could occur between the mothers and the nurses concerning the care for the infants. Nurses considered themselves as 'protectors of the infants' but the mothers themselves wanted to be the experts on their own infants. This could create a competitive situation. The mothers experienced that they had to be adaptable and do as the nurses wanted, in order to get access to their own infant (ibid). Situations like this will not benefit the possibilities for the mothers to breastfeed and establish motherhood. Instead it would be better if the health professionals acted more sensitively and in an adaptable manner towards the mother knowing when to give practical advice and when to recede into the background providing quiet support.

Study limitations

One possible limitation of this data collection is the lack of follow-up questions. On the other hand, having a new baby is a time full of interruptions. When using protocol writing, an advantage can be that the mother can go back to the text and re-write it or add more text whenever she finds it suitable. There may also be mothers who, according to Van Manen (1997), find writing difficult, which can be a reason why eight mothers did not send in their written protocols.

When undertaking a qualitative analysis, openness and pre-understanding are two important concepts to be considered. Gadamer (1995) emphasises openness when trying to understand another person, to not be confined by our pre-conceived notions. Researchers must be open to what is not immediately given; to see what he calls 'the otherness' in data, ie something not previously understood (Dahlberg et al 2008). To be able to do this, the authors discussed the possible effects our preconceived notions and ideas could have on the result. The authors of this study tried to be aware of our pre-understandings and suppress them so that we could let the mothers' own words in the writing be analysed as openly as possible.

CONCLUSIONS AND IMPLICATIONS FOR PRACTICE

Valuable knowledge can be generated by asking mothers of preterm infants about their experience of breastfeeding in the neonatal ward. It is important to bear in mind that becoming a mother to such a baby is a taxing period in life. Furthermore, getting starting with breastfeeding is laborious. Therefore it is crucial to listen to these mothers' experiences and to proceed from there with personalised support.

The findings from this study have led to some reflections about caring for mothers who breastfeed their preterm infants in a neonatal ward. For instance, they should be offered an area where they can breastfeed or express milk in private. The expressed milk should not be placed in a shared place as it is easy for the mothers to compare their milk production with others. Instead, it should be given to health professionals to be taken care of. Lastly, if the mothers want it, and if the ward has space, they should be offered the opportunity of sleeping in the same room as their baby.

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Maria Bjork

RN RSCN PhD

Anna Thelin

RN RSCN

Inger Peterson

RN RSCN

Kina Hammarlund

RN Midwife PhD

WHO 1989, Protecting, promoting and supporting breastfeeding: the special role of maternity services. Geneva, Switzerland: World Health Organization.

Maria Bjork PhD is a paediatric nurse and a senior lecturer at University of Skovde, Sweden.

Anna Thelin MSc is a paediatric nurse working at an NICU department at RyhovHospital, Jonkoping, Sweden.

Inger Petersson MSc is a paediatric nurse working at an NICU department at RyhovHospital, Jonkoping, Sweden.

Kina Hammarlund PhD is a midwife and a member of the Swedish Society of Psychosomatic Obstetrics and Gynaecology, (SFPOG), and a senior lecturer at University of Skovde, Sweden.

This work is supported by the School of Life Sciences, University of Skovde and the Skaraborg Institute in Skovde Sweden.
Gale Copyright: Copyright 2012 Gale, Cengage Learning. All rights reserved.


 
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