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Extraordinary exposed in early motherhood - a qualitative study exploring experiences of mothers with type 1 diabetes
© Sparud-Lundin and Berg; licensee BioMed Central Ltd. 2011
Received: 12 August 2010
Accepted: 7 April 2011
Published: 7 April 2011
Women with type 1 diabetes face several challenges during pregnancy, childbirth and in relation to breastfeeding. It is therefore of utmost importance to consider their need for specific support, early postpartum as well as in daily life after discharge from maternity care. Few studies have investigated these aspects of healthcare. The aim of this study was to explore experiences after childbirth regarding breastfeeding, glycemic control, support and well-being in women with type 1 diabetes.
A hermeneutic reflective life world research approach was used in this qualitative study. Data was gathered through audio-recorded focus group discussions and individual interviews with 23 women with type 1 diabetes, 6-24 months after childbirth. After verbatim transcription, the text was analyzed in order to identify themes of meaning and a conclusive interpretation of the explored phenomenon.
Experiences of extraordinary exposure challenged the women with type 1 diabetes in their transition to early motherhood. The exposure included a struggle with breastfeeding, although with a driving force to succeed. Everyday life was filled with uncertainty and unpredictability related to one's own unstable glycemic control and the women down-prioritized their own needs in favor of the child. A feeling of being disconnected from professional care further contributed to the experiences of extraordinary exposure.
In early motherhood women with type 1 diabetes have a great need for support in managing daily life postpartum, which requires contemporary approaches to overlap insufficient linkage between health care professionals in maternity and child health care, and diabetes care.
The childbearing period for women with type 1 diabetes is characterized by several challenges. The relationship between good glycemic control and better outcomes is well documented [1–3]. In order to minimize the increased risk of adverse outcome in diabetic pregnancies, careful preparation before pregnancy and medical care throughout pregnancy should aim to achieve optimal glycemic control . However, stringent glycemic control increases the incidence of severe hypoglycemia [5, 6]. This considered, it is not surprising that pregnant women with diabetes experience a higher degree of anxiety, worry, pressure and ambivalence compared to those with low-risk pregnancies [7, 8]. The increased frequency of episodes of hypoglycemia is often connected with unfamiliar body responses, unpredictability and loss of control in daily life [9, 10].
The pregnancy can become overshadowed by diabetes , patients hovering between being enslaved by it and mastering daily life . In our previous study we explored women's need for and experiences of professional support during pregnancy and childbirth. The women with type 1 diabetes received and valued increased attention from health care professionals during pregnancy. However, they considered the attention as being directed towards the health of the unborn baby and not their own health. Furthermore, the women expressed increased vulnerability if the professionals' diabetes specific competence and support was insufficient and if the diabetes organization was disconnected, i.e. lacking communication or collaboration between the antenatal care and the regular diabetes clinic .
The challenges for women with diabetes continue during childbirth as frequency of obstetric complications increases, with high rates of caesarean section and instrumental vaginal deliveries . Due to complications and morbidity both in mother and newborn, separation of mother and child soon after childbirth is more common. The risk for hypoglycemia in the baby during the first day (s) [14, 15] requires supplemental feeding to maintain glycemic balance. Delayed lacto genesis due to low maternal prolactin levels  and immature sucking behavior has been found in these newborns . The mother's insulin requirement often rapidly decreases after delivery of the baby. Together with an increased demand for calories related to breastfeeding, this requires careful individual adjustment of insulin doses in order to avoid severe episodes of maternal hypoglycemia . All of these factors contribute to a risk for delayed initiation, and the need for increased efforts to establish breastfeeding. There are conflicting results concerning breastfeeding rates in women with type 1 diabetes. A Danish study  found comparable rates in this group 4 months after childbirth compared to the general population. Two considerably larger German studies [20, 21] reported less frequent and shorter duration of breastfeeding. However, these studies reported a positive long-term time trend . The role of professionals is discussed, including aspects of support versus pressure related to breastfeeding in women with diabetes . Clinical routines in the Danish study  included several supportive actions to facilitate successful breastfeeding in the women with type 1 diabetes which might explain the high level of breastfeeding rates. For women with type 1 diabetes, who face additional obstacles in relation to breastfeeding, it is of utmost importance to consider their need for specific support, early postpartum as well as in daily life after discharge from maternity care. Few studies have investigated these aspects of healthcare. In this study, the aim was to explore experiences after childbirth regarding breastfeeding, glycemic control, support and well-being in women with type 1 diabetes.
The research design of this study is described in a previous publication . In brief, a hermeneutic reflective life world research approach was used. Hermeneutic philosophy stresses that interpretation is a key issue for understanding . A hermeneutic reflective life world research approach emphasizes that understanding of human beings' daily life requires knowledge of how they relate to and interact with the world . Furthermore it strives for adopting an open stance that is sensitive and pliable to a studied phenomenon and includes constraining one's own pre-understanding with the aim of grasping and comprehending meanings .
Settings and Participants
Primi- and multiparous Swedish-speaking mothers with type 1 diabetes at least 6 months after delivery were recruited from four maternity units in the western region of Sweden. The hospitals are located in both rural and urban areas and manage about 160000 deliveries annually. After delivery all these women and their newborns were provided care at the maternity ward according to regional guidelines. These guidelines were similar in the four hospitals and included early feeding of the newborn in order to prevent hypoglycemia, every 3-4th hour during the first 2-3 days. All the mothers were encouraged to breastfeed before every feeding session. The child's blood glucose was measured frequently the first 12 hours, and then with expanded intervals depending on occurrence of hypoglycemia.
The selection and description of the population has been provided in detail in a previous publication . In brief, we identified women with type 1 diabetes through the hospitals' birth register. Thirty-two women received written information about the study by mail. They were then contacted by telephone and after additional verbal information invited to participate in a focus group session. Twenty-five mothers agreed to participate in a focus group discussion, six failed to attend due to last-minute reasons of which two later participated in individual interviews. Two more women were interviewed individually due to living remotely or a desire for privacy. In total, six focus group discussions with 19 women (2-5 in each group) and four individual interviews were performed, with a total of 23 women giving informed consent to participate. All women were Swedish-born, about half of the group had completed secondary school and the others had a university degree. Thirteen of the mothers were having their first child (primiparous) and 10 their second or third child (multiparous). Ten mothers had spontaneous vaginal births, 12 had acute caesareans and one an elective caesarean. The age of the mothers varied between 22-37 years with a diabetes history of 4 to 31 years. The hospital stay varied between one and ten days within the group. Seven of the children had received care in a neonatal care unit. The age of the children at the time of interview varied between 6 and 24 months. The range of breastfeeding duration was one to twelve months. One woman did not breastfeed at all. The study was approved by the Regional Ethics Board .
The focus group discussions, lasting 90 to 120 minutes, were conducted in order to create rich data through interaction between the participants [26, 27]. The location was at the University or in a room close to the delivery ward at the hospital. Both researchers participated; one leading the discussion (the moderator) and the other taking notes and asking complementary questions (the observer). The individual interviews lasted 25 to 60 minutes and were conducted by one of the authors; three by telephone and one face-to face . The main question related to this study was: Could you describe your experiences of breastfeeding, glycemic control, diabetes care, support and well-being in daily life after childbirth? The postpartum period was defined to include both the mother's hospital stay and daily life up to six months after discharge. Each woman gave her narrative and clarifying questions were posed followed by common discussion of similar and contrasting situations and feelings. All focus group discussions and interviews were audio-recorded and transcribed verbatim.
The interpretative analysis of all text was directed towards discovering qualitative meanings of the phenomenon 'experiences after childbirth regarding breastfeeding, glycemic control, support and well-being in women with type 1 diabetes. No predetermined hypotheses, theories or interpretive sources were used and we strived to set aside our pre-understanding as much as possible with the aim of seeing the "otherness" in the data. The whole was understood in terms of details and details in terms of the whole across all generated data. Meaning units were identified and gradually clustered , initially by the first author followed by discussion and reconsideration with the second author, leading to modifications and adjustments of meaning units and emerging structure. Early in the reading of the whole text, an exposure emerged as being central to the mothers' descriptions of daily life after childbirth. Exposure here defined as being emotionally and physically vulnerable and thereby subjected to an exposed position. Therefore, in further reading of the text, the following questions were added in the dialogue with the text: What constitutes the exposure and why does it occur? Is the revelation different to childbearing women in general (without diabetes)? How do the women manage this exposure? What might decrease the exposure? Successively, in continuous dialogue between the authors, themes of meaning were recognized and developed by relating them to each other, looking for similarities and differences. At the end of this process seven themes were formulated. In continuous analysis and explanation of these themes, a further explanation and understanding of the extraordinarily exposure was developed. In this context, extraordinary exposure means being exceptionally exposed, e.g. more vulnerable than childbearing women in general. Finally a conclusive interpretation of the explored phenomenon was formulated.
Your stay at the maternity ward is a little different when you've had a baby and have diabetes. I was in a room with a lot of people who kept coming and going, they went home after a couple of hours....I didn't like it at all....because they had to keep waking us up to check our blood sugar and to give our babies extra feeds. (I:4)
What the exposure constitutes and how mothers dealt with it is organized into seven themes of meaning exemplified in quotes and followed by a conclusive interpretation. The quotes are marked as individual interview (I:1-4) or focus group (FG:1-6).
The Breastfeeding Struggle
That was the hardest part; she had to keep eating all the time, because her blood sugar was so low... and I was really stressed because she had to eat so much, so I didn't know how to breastfeed. (F:4)
He was happy and fell asleep until a night nurse came and told me off, asking if I hadn't been told how dangerous it was (to use a plastic nipple shield) and if he wasn't feeding right ...She said, "He won't get as much as he needs, there might be infections, he could completely lose his ability to suck and so on and so forth"...It made me feel just terrible.
Here I thought I was doing just fine and then she made me feel completely useless. (F:4)
Feelings of guilt and insufficiency could remain long after discharge from maternity care, affecting the mothers' well-being. A great part of their life during this period was dedicated to feeding the baby. One mother expressed that she became depressed for several months due to feeding problems. The struggle to breastfeed was also related to frequent episodes of maternal hypoglycemia. One mother expressed she did not believe that the struggle was worth the fight and perceived that she" got her life back" (F:1) when she gave up breastfeeding and began supplemental feeding.
Driving Force to Breastfeed
Despite the challenges and obstacles experienced related to establishing breastfeeding, a prominent urge to try and persevere was obvious in the mothers' discussions. One reason for this drive was that other women, without diabetes, breastfeed. The self-image of being a "good" mother made it important to be like those healthy mothers and just make it work; as one mother said: "I have to be able to do it too" (F:1).
Mother: I gave him extra feeds with formula and he just cried when I tried to breastfeed.
Moderator: So you must have been really persistent. It seems like it was important for you to breastfeed?
Mother: Yes, that's what the nurse at the paediatric care centre said too, she said, "For goodness sake, give it up! You can just give him some formula."
And I said," Yes, but just let me try one more thing and then one more and one more." After a month I gave him an entire feed (from my breasts), just like that. (F:5)
On the other hand, confidence in the ability to breastfeed was another illuminated aspect. This included expressions of gratitude and sometimes astonishment at how well breastfeeding could eventually work out after the initial struggle. Multiparous women with negative experiences from previous breastfeeding described how they felt more prepared and could thereby manage their blood glucose fluctuations more effectively. As one mother expressed "somewhere at two or three months there was going to be some kind of rhythm to my blood sugar levels and my breastfeeding" (F:6).
I was dead tired... I saw that they were here but didn't notice how low my blood sugar was then.... I woke up after they gave me the shot. (F:4)
You're both a new mom and you have diabetes too. You're lonely, vulnerable and fragile, just like any new mom. And then you have this disease, so you need another type of, more intense support from someone who knows about both diabetes and being a new mom. (F:2)
So I was lying there just thinking about how much I wanted to see my baby but no one wanted to take me up there and they weren't giving my husband any information. (F:3)
They actually didn't ask if I wanted to feed my baby myself. They really made a big deal about it, that I wasn't supposed to be there at all with my son between feeds, just when he had to eat. Then I was supposed to offer him my breast first and then feed him with a cup. (F:1)
Mother 1: I was mostly scared of dropping her on the floor. It was when I was lying down, which is why I didn't see the connection at first.... I'm sort of tired. I had her on my outer side near the edge of the couch but somehow I've always managed to keep a hold of her. And she had fallen asleep because she was full and happy. And then her kicking me and crying woke me up. That didn't feel safe at all.
Mother 2: I can be unconscious with my baby beside me when my husband comes home. This time it's only happened once.... when my husband has been home but it happened several times with my first baby. And nobody contacted me to see how I was doing either, because I was at home. So it's been real difficult. (F:4)
Restraining glycemic instability
It was a major adjustment since you're used to taking so much insulin and then, just from one day to the next, you go back to your old dose. I thought that was really hard and I took the wrong dose a lot. I went back to my old doses...took too much insulin. (F:6)
Yes, I felt very insecure and that's also the main reason I quit, because I was scared, what if I drop him while I'm sitting here? (F:1)
Mother 1: It's just like you say, you have to put yourself first. Both times I've been kind of frustrated...I've really cursed this diabetes, that I have to finish eating....it feels unfair that I can't just, like, pick her up and breastfeed her.
Mother 2: Other babies whose moms don't have diabetes have it different. (F:3)
Down-prioritizing one's own needs
You've been so obsessed with your blood sugar levels during those nine months, so when the baby is born you just think, oh, I'll just check my sugar for the sake of checking but I don't really care what the darn meter says....and then it takes a while before you can take it in, what does the little display really say? So you don't really give a damn about it. (F:5)
Mother 1: And then, when you've given birth, they suddenly abandon you. No follow-up of how your diabetes is doing. You're supposed to have the time to check your blood sugar when you can't even go to the bathroom. I mean, it's ...nobody gives you any support at all, that's what I felt.
Mother 2: The baby often becomes the centre of attention. You feel like they've forgotten you. I had to get what I needed myself. I wasn't happy when my husband was going back to work. I was worried, what's going to happen if my levels go down really low and what happens if I don't feel well? (I:3)
It had taken several months, sometimes as long as six, before re-establishing the connection with the regular diabetes clinic. The mothers were often expected to make contact themselves, which they did not have the energy to prioritize. When finally visiting the diabetes clinic some diabetes professionals did not pay attention to the passage into motherhood. In addition, with one exception, the child health care professionals seemed to have no knowledge about diabetes in mothers of newborns.
Adjusting to or questioning available support
And you notice real quickly, whether it's at the delivery ward or in some other health care situation, when they give you that kind of answer. Then you give up, you don't ask any more questions, you work it out yourself. (F:3)
The midwives at the maternity ward are wonderful, because I had no problem with them kind of grabbing hold of my breast and showing me. I thought their take-charge attitude was great, because I wanted some real help. (F:5)
And my husband and I have a routine where we have to talk to each other when he gets to work to make sure I'm out of bed and...I'm sleeping when he goes to work, so he calls and checks that I'm up and he contacts me before he has lunch, during the afternoon and when he's on his way home. And my neighbours know I have diabetes and my oldest daughter who's almost five knows that you can call 112. (F:2)
Conclusive interpretation: Extraordinary exposed as a mother with type 1 diabetes
The narratives from daily life illuminate that to have diabetes as a mother of a newborn is a situation of extraordinary exposure which seems to challenge the transition to a confident mother. Although the transition to motherhood is an exposed situation for women in general, these mothers have particular needs which make them further exposed. There is a need for extra care of both the newborn and the mother herself related to complications and increased tiredness after a demanding pregnancy and childbirth. To breastfeed is experienced as a pressure and the newborn's initial need of nourishment to avoid dangerous hypoglycemia seem to increase this pressure to breastfeed. A sense of guilt related to the need for using artificial milk is present, which in turn increases the pressure to be a competent mother. Fluctuating glycemic levels, often with unpredictable hypoglycemia are a particular threat to successful breastfeeding, general well-being and the daily routine. The women's own needs are often down-prioritized. The child's health, the family and the maternal role consume a lot of energy, and to feel satisfied with a healthy baby and successful breastfeeding appears to be more important than stabilizing her own blood sugar levels during this period. As a consequence of this extraordinary exposure, the mothers are in need of intensive support; both from professionals and significant others. As one mother described: " The baby's born but you're still really a candidate for maternity care." On the contrary, the intensive professional care and support during pregnancy and childbirth was, for most mothers, abruptly interrupted after the child was born. This led to feelings of being locked out and in "no man's land" in which no professional maternal diabetes support was provided. A sense of loneliness was present and seemed related to the pressure of establishing breastfeeding and stabilizing the often-fluctuating blood glucose levels. Professional support seemed to be almost absent in daily life and taking the initiative to contacting care providers for assistance was not prioritized. The women's partners have to carry a heavy burden of responsibility in the extraordinary exposed situation the family faces. To meet the overall needs of these women awareness of early post partum exhaustion, co-care of mother-child, and maternal involvement in the care of the child is essential. Respite through concrete help, breastfeeding-friendly attitudes and diabetes-related knowledge in care providers are also important.
The findings show that mothers with type 1 diabetes are extraordinary exposed because of the simultaneous challenges of their diabetes and the life-transforming process of motherhood. Motherhood as an exposure has been identified in a theoretical framework developed by Rogan et al. . The process of becoming a mother is characterized by overwhelming change, constant learning and a reconstruction of self, including feelings of being drained, of loss and aloneness. Although we identified a similar process of exposure in mothers with diabetes, it was apparent that their expenditure of physical and emotional energy as well the their need for additional learning was extraordinary. The breastfeeding challenge was extensive; probably more than for newborn mothers in general. Despite the unstable glycemic situation, and other obstacles following childbirth, the desire to breastfeed was obvious and may be related to an awareness of the many benefits for the child. Numerous benefits of breastfeeding for the child have been identified . This is general societal knowledge and might explain the mothers' driving force to breastfeed despite the obstacles they face. This could be a way to balance the guilt for sometimes being forced to take care of their own needs before the baby's. Interconnectedness between breastfeeding and decreased negative mood and perceived stress in mothers has been identified [30, 31] and may be even more beneficial for mothers with diabetes. However, women with diabetes undoubtedly need more extensive support from health care providers and relatives to initiate and maintain breastfeeding. There is evidence for the effectiveness of prolonging exclusive breastfeeding by means of additional professional and lay support in promoting any breastfeeding . The question is where such professional support can be provided in times of early postnatal discharge. Barimani et al.  discuss the risks related to a lack of linkage in postpartum care, and this became obvious in our study with several mothers experiencing insufficient breastfeeding support, both on the maternity ward and in child healthcare centre.
However, the main finding in this study comprises insufficient and sometimes absent diabetes care to the mothers after childbirth. The extensive support provided to women with diabetes during pregnancies  is a widely-spread clinical practice today but a lot remains to be done regarding the health care support after childbirth. Rasmussen et al.  have identified the pregnancy and lactation period to be a major turning point and a transition in which women feel that their previous skills in managing their diabetes become inadequate. Our findings indicate that the mothers were more or less left alone with the struggle to manage their diabetes and its unpredictable course after childbirth. In the focus groups, the mothers' need to discuss general issues related to childbirth and breastfeeding was obvious, and compare experiences of how to manage frequent blood sugar fluctuations. Rasmussen et al.  have found Internet communication to be one of the main strategies that young women with diabetes in their study used to create stability and manage uncertainty during central transitions such as childbearing. The autonomy and integrity in interactions with others were valued and could thereby control needs for information and support for diabetes-related issues. In line with these findings, one policy could be to provide more or less round-the-clock web-based professional as well as peer support to women in the early motherhood transition.
Combining the strengths of focus groups with those of conducting individual interviews which might contribute with more detailed, deep descriptions can yield different layers of data which complement each other . Life worlds will be encountered and mixed in the focus group discussions, which for the participants, sometimes leads to a new understanding of issues related to the phenomenon . We considered this way of collecting data as a useful tool to capture the meanings of the phenomenon. Furthermore, in line with experiences in another study , we found that the focus group discussions allowed the participants to share, reflect on and respond to each others' experiences of meeting everyday challenges. Moreover, the focus group itself became a supportive arena in which feelings and experiences were acknowledged and confirmed by the others, a support the women had needed during pregnancy and after childbirth .
One main methodological question is: in what way the findings from this study can be transferred to other practice. Qualitative studies must always be interpreted in relation to the context; in this study, the postpartum period for mothers in Sweden with type 1 diabetes. Studies have shown socio-demographic factors to be predictive of breastfeeding rates in women with diabetes . The participating women in our study had various educational levels, which correspond with Swedish childbearing women in general and were both primi- and multipara. They had experienced different models of antenatal and postpartum care; some had been separated from their child early postpartum while others had not; and their experiences of breastfeeding varied. An important limitation for transferability of the findings was that non-Swedish speaking women were excluded. However, the qualitative study design do not imply that the results will be inapplicable for mothers with type 1 diabetes living in Sweden as well as other countries with differently organized healthcare.
Entering motherhood after a pregnancy pervaded by extreme attention to blood glucose levels, anxiety about one's own and the child's health, finishing with new challenges after childbirth, should qualify mothers with type 1 diabetes for some kind of directed support during the first months after childbirth. This study shows that the women during their stay at the maternity ward and after discharge from hospital, although extraordinary exposed, did not receive sufficient support. It is obvious that healthcare routines need to be developed, adapted to individual needs and related to both maternal diabetes management and breastfeeding.
The authors are grateful to the mothers who shared their experiences of childbearing in living with diabetes.
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