Maternal perception of premature birth and the experience of pre-eclampsia pregnancy

MÉTODOS: Estudo qualitativo com a utilização da técnica do grupo focal, realizado com 28 mulheres em maternidade referência para gestações de risco no Rio Grande do Norte, em 2004. As mães incluídas tiveram gravidez com pré-eclampsia e parto pré-termo e conseqüente internação do recém-nascido em Unidade de Terapia Intensiva Neonatal. Os dados foram analisados por meio da técnica análise de conteúdo temática categorial, abordando três núcleos temáticos: informações sobre a pré-eclampsia no pré-natal; vivências com o recém-nascido pré-termo; e a percepção das usuárias sobre o atendimento dos profi ssionais.


INTRODUCTION
Periodic prenatal care is essential for the healthy evolution of a pregnancy.It should include fundamental aspects such as: treating pregnant women and their family with dignity, providing relevant information and adopting behaviors and procedures conducive to the healthy development of the pregnancy, delivery and birth.*Thus, the basic care for women in the pregnancy-puerperal cycle includes measures of prevention and health promotion, in addition to the early detection and treatment of clinical events that negatively affect the mother or the fetus.Among these events are preeclampsia, whose onset is slow and insidious in the second half of the pregnancy, with an incidence between 5% and 8% of pregnancies. 15t is characterized by the development of hypertension with proteinuria or edema, or both, 3 with the following predisposing factors: early and late pregnancies (younger than 15 and older than 35 years), Black racial group, fi rst degree relatives who had preeclampsia, chronic hypertension, maternal age, and low socioeconomic status.In addition, some pregnant women may show an association between psychological alterations and hypertension. 3,18,* Authors point out a number of maternal impacts of preeclampsia such as increased number of cesarean sections, kidney failure and liver failure or rupture 1 .Fetal impacts are intrauterine growth retardation, placental infarction, early placenta displacement, prematurity and its consequences. 12,19 addition to that, it is believed that delivery may be preceded by a period of increased anxiety, aggravated by early maternal hospitalization and pregnancy interruption. 10This event changes the natural birth rhythm, provoking maternal feelings of despair, fear and anxiety.*Thus, psychological and emotional support should be part of women health care, especially those prone to pregnancy complications, in particular, newborns weighing less than 2,500 grams 6 and consequent hospitalizations in neonatal intensive care units (NICU).
In this context, it is considered that the advent of technology has caused a signifi cant increase in premature newborn survival rates in NICUs.However, it is important that the focus of professional attention be directed not only to attending babies' biological needs, but also their parents' psychological and emotional needs, especially the mothers who face NICU routine.
In this perspective, the present study was motivated by the aspect of humanized care and by the practical experience of fragmented care.The objective was to analyze maternal experiences of preeclampsia pregnancy and newborn care in the NICU.

METHODS
This is a qualitative study using the focus group technique, 4 whose objective was to obtain data by means of discussions, in which subjects expressed opinions and attitudes about a certain matter in an informal and spontaneous way. 9e study was conducted in a state facility specialized in high-risk pregnancies.Data were collected between September 2004 and March 2005.
The study sample comprised 28 women with preeclampsia, confi rmed by their medical records, who had preterm delivery and consequent hospitalization of their child in the NICU.Researchers were allocated to three groups, averaging nine subjects each.
Inclusion criteria required a minimum of six and maximum of ten women for a group to be formed.The study was carried out in the postpartum period.While the baby was hospitalized, women were enrolled in mother-attendant programs, which prolonged their stay in a hospital setting.
They took part in meetings with a moderator (the researcher), who conducted interviews with open questions whose responses were not induced and who stimulated the participation of all the mothers, thus avoiding discussions to get monopolized by a few of them.One observer was responsible for recording each response, in addition to registering facial expressions and reactions to the questions, for future identifi cation of the discourse transcription of each woman.
The meetings lasted 90 minutes on average.There were occasional interruptions due to the crying of some interviewees; two emotionally upset women, one from the fi rst group and the other from the third, were referred for counseling by professionals from the institution itself.
The following thematic nuclei were approached: information about preeclampsia during prenatal care, experiences with the preterm newborn in the NICU and mothers' perception of NICU professionals' attitudes.
Subjects' responses were assessed using the categorical thematic content analysis proposed by Bardin 2 (1995).
The identity of subjects was preserved; they were represented by fl ower names corresponding to their hospital beds.The study was approved by the Research Ethics Committee-UFRN, approval No. 90/04 and an informed consent form was signed by all study participants.

RESULTS
Interviewees' age varied between 18 and 35 years; 82.1% had elementary and secondary schooling, while 17.9% had university education.Monthly family income was less than US$ 520.00.
Obstetric and perinatal data showed that 71.4% of the women had four prenatal consultations.From gestation week 24, elevated blood pressure on more than one occasion over a 30-day period was found on prenatal charts of 60% of the subjects.Most (57%) were in their second pregnancy; 80% had cesarean delivery, owing to the seriousness of their gestation; and baby's birth weight varied between 1,200 g and 1,500 g.Signifi cant differences in group homogeneity (p <0.002) were found only between groups I and II in terms of subjects' age.The similarities between the remaining variables allowed the use of the same procedure for data analysis.
Interpretation of the reports was based on theoretical reference since the purpose of the study was not to measure the factors studied but rather understand women's perceptions of them.The Table shows the three thematic nuclei that gave rise to nine categories, 23 subcategories and 318 analysis units.The relevant points will be discussed.

Information on preeclampsia during prenatal care
It was focused on the time at which subjects should have been informed about preeclampsia.Twenty analysis units showed they were unaware of this condition during prenatal care.They only became aware after hospitalization or by the imminent premature delivery, as illustrated in the following discourses: "I didn't know.During prenatal care the doctor told me to rest and not to eat salt but she didn't say my pregnancy was high-risk."(Jonquil) "I realized when I got here.My blood pressure started to go up before seven months but the doctor thought it would go down.I came to all prenatal visits and she only told me to lie down.I didn't know that high blood pressure was bad." (Sunfl ower) In the same context it was assessed the level of maternal awareness of factors related to prematurity.Only In NICU daily routine, the diffi culties reported were attributed to different reasons such as not being able to hold their child (in their arms), seeing their child being pierced, fear of feeding their child with a tube and seeing their baby in phototherapy.From the maternal point of view, some equipment and care procedures were seen as causing suffering, although the mothers were aware of their need to improve the baby's clinical condition and their likelihood of survival.
" The mothers also talked about other feelings arousing from the interaction with their child (joy, emotion and happiness), experienced when they held their babies in their arms for the fi rst time, when they heard them cry and when phototherapy and IV tubes were removed.
"When I heard him cry for the fi rst time, I was so happy because if he was crying it was because he had the strength to cry." (Chrysanthemum) "Everything that shows he's getting better makes us happy.Even when he gains only 5 grams, it seems like he gained a kilo; we are so happy and it makes our day."(Lobelia) It can be noted in the following report that being a mother-attendant causes distancing of the mothers from their family and social environment, and diffi culties arising from the confl ict between the importance of staying with their baby and not being able to engage in routine family activities.

"I miss my home and I dream of the day when I can go home. Time drags and we don't have much to do." (Flowers) "I know that I have to stay because of my baby but it's very hard being in a hospital for such a long time." (Poppy)
This process was aggravated by the fact that the institution did not regularly provide leisure activities or programs that would favor healthy activities to reduce stress and promote maternal socialization.
Thus, it was found that support derived from the families, the interaction between mothers experiencing similar problems, comforting words of some professionals and religious faith.
four reports showed an association with gestational hypertension; factors linked to religion, diet and family problems predominated.

"I think God wanted it this way." (Violet)
"I think it was because I was angry and didn't cry." (Gardenia) The ideas that emerged from the interviews show women were unaware of their preeclampsia, which may have contributed to defi cient preventive care and even to early hospitalization caused by the severity of their condition.
Early hospitalization and imminent preterm delivery triggered in the women a fear of death or of losing their child, situations found in 26 and 24 analysis units, respectively.This feeling was aggravated by the fact that some of these children did not cry at birth and were taken immediately to the NICU.Recalling these experiences in the group made women pause or weep, as can be seen in the following discourses:

Experiences with a child in the NICU
Maternal experiences with their newborn in the NICU were categorized into aspects related to feelings according to their frequency in the reports, associating them to situations that the mothers considered as the hardest moments and those that were acceptable to the group.
Initially, it was investigated the mothers' fi rst visit to the NICU, the fi rst postpartum contact between mother and child.On this occasion, a thorough analysis allowed to understand the emotional load expressed by pauses, weeping and words such as shock, sadness and despair, illustrated as follows: "When I got there I was in shock.[

Mothers' perception of NICU professional attitudes
Professionals' attitudes toward women with their children in the NICU revealed that the relationships between health professionals and patients generate confl icts and doubts.Although there is no obstacle to maternal involvement in the care of their child, it was perceived an inability to interact affectively, showing that NICU team is not aware of the diffi culties faced by mothers when caring for their children.The professionals offer formal support, providing insuffi cient information using technical language that induces mothers to create a distorted reality.
"When I asked a doctor about my baby she would say she wasn't the one taking care of her but doctor such and such.This doctor would say the same.I know very little or almost nothing of what went on in the ICU.They only told me her condition was very serious but why serious?I don't know why she was hooked up to so many machines, I only found out why she was tube fed." (Mountain Rose) "When I would get there to give her milk through the tube, I didn't know how.I was afraid and it took me a long time to learn.Some were understanding and helped me but others […] and sometimes I was so sad when I went back to my room.I thought: "My God I don't know how to do it and they're going to make me do it all alone".(Carnation) In this thematic nucleus two different statements were found.First, women pointed out the fl aws in the communication process between NICU team and the mothers; second, they expressed satisfaction with the care provided to meet their child's biophysical needs (e.g., team's technical ability, easy access to complementary tests and therapeutic and technological resources), even though their doubts and anxieties were not attended to.These women are probably unaware that these two realities complement one another in an integrated health care system.

DISCUSSION
The study did not allow to associating the occurrence of preeclampsia and/or prematurity to the frequency of prenatal consultations since these data were not corrected by the gestation duration.Because of their shorter gestation, mothers of premature babies have fewer consultations.Some studies show no signifi cant differences between the number of prenatal consultations and perinatal outcomes. 11,16On the other hand, Coimbra et al 5 (2003) point out that inadequate prenatal care is closely related with social inequalities.
The episodes of elevated blood pressure experienced by some subjects in this study during prenatal care should have alerted professionals to the need for a shorter interval between consultations and thorough investigation.Or, according to the Brazilian Ministry of Health guidelines,* women should have been referred to high-risk prenatal care.
It is during prenatal care that health team has the opportunity of identifying factors, either social or biological, that may negatively affect the course of gestation Among these factors is early detection of gestational hypertension, which can be identifi ed by the simple, low-cost technique of measuring arterial pressure. 14 was noted that the quality of information provided to the women about pregnancy with preeclampsia during prenatal care was inadequate or not appropriate to their level of understanding.This may have contributed to not having both prevention measures and better care for more serious conditions.*This fi nding is corroborated by Harrison et al. 7 (2003) who argued that women's involvement with their own health care in high-risk pregnancies makes them feel responsible for themselves and their baby's health.
The fear of dying or losing their child may be caused by lack of information during prenatal care and unpreparedness for adversities caused by preeclampsia during pregnancy.
It is known that unfavorable perinatal outcomes, associated to gestational hypertension, pose signifi cant risks for prematurity and consequent hospitalization in the NICU. 19As a result, mothers and family members experience emotional overload 8,17 due to mixed feelings about the need for therapeutic resources and their frustration of not being able to affectively interact with the child.In this way, the distancing from family and social life caused by maternal hospital stay is confl icting.Although mothers are allowed to leave the hospital, fi nancial constrictions and the distance from their home make it not feasible.However, this situation could be minimized by the adoption of recreational and occupational activities that could reduce the idleness detected. 13e gaps seen in the relationship between health professionals and mothers suggest a need for changes in psychological and emotional care of women stressing on their involvement as indispensable for newborn recovery in the NICU.Above all, there should be provided better quality of information.This is corroborated by Scochi et al 13 (2004) who found that NICU team, although in favor of maternal involvement in child care, are clearly unprepared to facilitate it.However, one should bear in mind factors such as professional turnover, excess work demand on the institution and constant overcrowding that cause team overwork and make them to adopt a technicist approach.But to change this process, the reasons that make some professionals adopt such posture need to be thoroughly investigated.
The implementation of humanized health care is currently under way.These professionals' reality is far from the proposed integrated health actions since they are not able to identify or understand the emotionally fragile condition of premature babies' mothers, especially when they are psychologically exhausted by high-risk pregnancies.
Thus, the study fi ndings show that the diffi culties experienced by women in the context of preeclampsia and prematurity were aggravated by little or no information.This lack of communication was seen during prenatal care, hospitalization, and mostly in NICU team-mother relationship.This hampered maternal understanding of their child's clinical conditions and rendered the mother-attendant process exhausting, causing considerable emotional impact and sometimes refl ected in the mother-child bond.
In conclusion, the study indicates a need for a reorganization of perinatal care, not only in hospital units but also in basic prenatal care services.It is suggested the integration of health actions for women in the pregnancy-puerperal cycle, especially when pregnancy poses maternal/fetus risks.Certain aspects of maternal involvement in caring for their child in the NICU should be reconsidered and measures implemented that support and defi ne the real maternal role in caring for their child.

Table .
Analysis of puerperal women reports, distributed into categories, subcategories and thematic nuclei analysis units.Natal, Northeastern Brazil, 2005.
knew that she was in the incubator.I was kind of sad because I couldn't hold her in my arms but I understood that she had to stay." (Carnation)