ORIGINAL RESEARCH

The Baby's Diary to the premature infant's mother: supporting family-centered care

Camila Carla de Paula Leite^I; Sarah Nancy Deggau Hegeto de Souza^II; Edilaine Giovanini Rossetto^III; Leila Garcia de Oliveira Pegoraro^IV; Vivian Carolina Benetti Jacinto^V

I Nurse. Specialist in Neonatal Nursing by the State University ofLondrina. Paraná, Brazil. E-mail: camilacpleite@hotmail.com
^II Nurse, Ph.D. in Science. Professor of the Nursing Department of the State University of Londrina. Paraná, Brazil. E-mail: sarahuel@sercomtel.com.br
^III Nurse. Ph.D. in Science. Professor of the Nursing Department of the State University of Londrina. Paraná, Brazil. E-mail: ediluizrossetto@gmail.com
^IV Student of 3^rd year of Nursing in the State University of Londrina. Paraná, Brazil. E- mail: garcia_pegoraro@hotmail.com
^V Specialist Nurse in Neonatal Nursing by the State University of Londrina. Paraná, Brazil. E-mail: viviancarolinaj@hotmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2016.8664

ABSTRACT

Introduction: the Baby's Diary is a tool that gives families information about the baby, prematurity and the day-to-day of the neonatal facility. Objective: to ascertain the meaning of the baby's diary to the premature infant's mother. Method: this qualitative, descriptive study was conducted at a university hospital in Londrina, from December 2011 to April 2012. Eleven mothers were interviewed, using a semi-structured instrument. Results: data were analyzed by Bardin thematic analysis, revealing five themes: The diary softening the impact of the premature child's birth; Day-to-day record; Source of knowledge and learning; Facilitator of the process of breastfeeding; and Memorial for the future. Conclusion: the Baby's Diary, by informing, reducing fears and anxieties and acting as a record for the future, was perceived as care for the family that assisted in understanding and coping with the situation experienced.

Given the repercussion of the birth of a premature for the health system, for the child and their family, and the importance of parental participation in the care of their children still in the hospital, the implementation of creative and participatory health education programs is extremely important, aiming at preparing the parents for the care and discharge of premature¹.

Not always is given the deserved value to this situation by the health team. Frequently, professionals do not consider as their assignment the family care and their feelings and coping difficulties of the situation.

Considering the vulnerability of these families and their participation in the child development process, one of the great challenges of neonatal care is to promote care actions that meet their needs and from the very low birth weight (VLBW)² newborn and ensure that these children receive support and appropriate follow-up, providing a better prognosis and quality of life of the whole family group³.

In order to meet the needs of families of VLBW newborns, a project entitled A support network to the premature family was introduced at the University Hospital of Londrina (HUL), in 2006, described in detail in a previous publication⁴.

This study refers to one of the project's strategies, which is the delivery of a diary to the mothers of these babies, entitled Baby's Diary. This diary has been prepared to be support for the mother, space where she can register as well as objective data, their emotions and feelings along the baby's hospitalization. The topics are: baby hospital environment, operation of the neonatal intensive care unit (NICU), equipment and devices, main prematurity diseases, guidance about premature breastfeeding, care for discharge, vaccines, and space for photos, baby foot and hand stamp, birth data, space for notes about breastfeeding and a registration local of maternal feelings, in addition to serving as a diary to register the experienced every day, to assist in the elaboration and the fight against this situation.

Given the importance of family support during this period of emotional distress, it is questioned whether the diary has been a significant help when used by these people. It is believed that an instructional material, of support, registration and the direction of family role in this step, is an important strategy for this mother and family to reach more easily an adaption to the situation and can apprehend what is necessary for the care of their premature child. The aim of this study was to understand the meaning of Baby's Diary for the premature mother during their hospitalization in neonatal units of a university hospital.

LITERATURE REVIEW

This research adopted the care concepts focused on the family for their goals of support, respect values, beliefs and cultures, including the family in care and decisions, encourage and facilitate family support and support network, recognize the family strengths and individualities, expansion of intra-hospital care to the community, recognizing the importance of parents in the newborns lives and emphasize the respect, support and partnership between the family and health professionals^1-5.

METHODOLOGY

This is a descriptive research with a qualitative approach, performed at HUL (University Hospital of Londrina) in Londrina, Paraná, which is a regional reference for risk pregnancies, where the length of hospitalization is on average 45 days.

In the period between December 30^th, 2011 to April 12^th, 2012, 11 mothers were interviewed who their children had born weighing less than 1500 grams and/or less than 34 weeks of gestational age, hospitalized in neonatal units of HUL and who agreed to participate in this research.

Mothers who agreed to participate in the project A support network to premature family received the diary at the first visit of the baby in neonatal units. The diary was delivered by resident nurses of neonatal nursing addressing the diary content in an explanatory way and, if possible, starting filling the data related to the baby birth together with the mother.

From the delivery of the diary, the monitoring of its completion was performed during weekly meetings of the researchers with their mothers, when its continued use was stimulated.

After 15 days using the diary, the mother was invited to participate in this research. In the case of acceptance, they signed the informed consent form, followed by an individual semi-structured interview, recorded from the guiding question: Tell me how is the use of Baby's Diary?

It was also requested permission for the use of some records that they write in the diary, in the space of Mom messages.

Once transcribed, the declarations were submitted to content analysis in the thematic modality. This analysis is composed of various techniques where it seeks to describe the content issued in the communication process, whether through speech or texts in order to obtain, by objective and systematic procedures of the description of message content, indicators (quantitative or not) that allow the inference of knowledge related to the conditions of production/reception of these mensagens⁶. The letter I was assigned to the interviews and the number corresponding to the description of its speeches.

Five themes that are discussed in the Results section emerged from the maternal testimonials content analysis

The analysis of the speeches of the participating mothers in the research allowed the construction of five themes presented below.

Softening the premature birth: feelings, anxiety

The routine of a NICU is different of everything that the family lives and knows. Parents come and go, and their children remain. Often, they are seriously ill, and parents need to deal with the fact that they cannot take their children home or even get them on lap⁷. Thus, space for families to reflect and record their feelings can help them in the elaboration of this suffering.

The interviewed mothers reported contradictory feelings, such as guilt, for feeling responsible for their son's suffering and, at the same time, expressed hope and resignation⁸.

We found maternal records containing messages for their child in this period of separation in the Baby's Diary:

There are times that I get a sinking heart. Today I will not visit my baby, it's hard, I am recovering from the cesarean and his dad is at work. I will see him only tomorrow. I feel sad when I can't see him, and I have no news of my baby. Mommy loves you so much my son. Miss my lovely little love, God takes care of my son. (I3)

From the speeches, the Baby's Diary was mentioned as a maternal ally for facilitating the understanding of prematurity, inserting the mother in the daily life of their child:

What I mark [during the speech], I'll be able to pass on to others, who have premature also, for me it was good, because it is preparing me for many, many things, and I have a fight ahead. (I6)

It helped because otherwise I would be nervous, anxious, if depend on your speech only, I wouldn't be like this, I would not get it. (I7)

I read everything especially that part of the premature, it helps, clarify a lot, from my other son for this, I thought there is more support because I hadn't this with my other son. (I9)

By dealing with issues relevant to the family, the diary welcomes and provides a way to feel closer to the son, a better acceptance of the premature baby, recording the daily events with the baby and the feelings of the family at this time of conflict, generating safety for the mother and family. During the analysis of the interviews, feelings of bond, mother and son affection and early contact difficulty between parents and premature babies were expressed, according to the following lines:

[When using the diary felt] that I was much more attending of his life than just come here, spend a hand on him and go away. (I1)

When I'm filling, and when I see that can stamp the foot, put the pictures, I fall in real, hey, I have to be there with my son, I have to give strength, he is evolving. (I10)

This demonstration of bonding and affection was also found registered in the diary by the mother:

Today my husband and I are going to see our baby; we miss him. It's so nice to have that feeling of a mother growing in my heart. (I3)

The long period of baby's hospitalization and deprivation of the environment increase the stress of the mother and family, which can damage the establishment of the bond and affection⁸. Studies and theories sustain the importance of the mother and father relationship with the child, aiming the appropriate development of the personality and the formation of a secure base for mother-child bonding and affection. It has also highlighted the importance of mother-child interaction to prevent damage by early separation⁹.

Everyday registration as a way to participate in the care.

Memories of moments and routine memories of their children arose from maternal lines.

I pay more attention to him to mark everything right, and it was good. (I1)

I look back there and see how he was [pause], it give me strength, show me how he is evolving. I think if I had this [referring to the diary], today I would not be quiet and would not even know how much he had improved (I3).

All the things I do I mark, the day I changed his diaper, wiped his little eye, I cleaned his little mouth, I did the kangaroo. When I have good news I go there and mark everything that happens I'm with the diary in hand and marking. (I6)

[Referring to the brother of the premature] he wrote everything, has his letter, he has picked up the diary and start writing [pause] he reads and fills it, he cannot wait to take pictures and put there (I9).

[During the speech] you put height, weight and think: 'Wow, only this is very little, very little, wow'. Then you get real because sometimes you are on the moon, you cannot do anything; it's very strange. (I10).

The diary was used by mothers as a space for important events, to record facts of the every day that happen to the baby. It is observed that the mother tends to observe more the child, so they can have data to register in the diary. During hospitalization, the daily pressures are very stressful due to the sick baby and their stay in the NICU, as the registration of the event of the first bath, the first time that they held the baby in their arms, the first breastfeeding. It is important to remind them to mark what have been already faced and overcome and encouraging them to move on. To register the facts in the diary as a task corroborates what is recommended by the Ministry of Health as to offer to mothers who remain in hospitals, activities to help them in the adaption and encourage them to the exchange of experiences with other mothers, intermediated by the activity in common, that is filling the diary⁷.

A source of support, information and learning.

Difficulties in understanding prematurity and hospital environment were mentioned in the interviews and the importance of sources of information for the mother and family.

The diary was also the most helpful because if I had a question I wanted to do to them [doctors] and I felt ashamed, then I read the whole diary and responded to me [pause] I felt calm because it is also a friend to me, I go there and write, the diary is important (I2).

In the beginning, I forgot it because it was too much pressure, I had the baby, I was very anxious [pauses] it is a way to reduce my anxiety. (I3)

It was interesting to me, to know a little of what is a premature baby and care for them. Without this support, I don't know what we could do because I have no experience of caring for a premature baby; it helped me a lot. (I5)

Today I went to see my baby. I am glad he has 1200g and concerned because he has an infection. Doctors reported that the premature baby is very exposed to infection because they do not have enough antibodies, but my son is strong, he is a champion. (I3)

The diary was also an important source of relevant information for the understanding of the family, due to the practical and accessible explanations. It was mentioned as a facilitator in understanding the premature baby, the hospital environment where their son is, their routines, equipment and information about the procedures and care that their baby might need due to prematurity, which helps and generates security, reducing stress during the child's hospitalization. It served to guide and meet any difficulty in information and access to the team due to shyness or maternal shame. The diary complements the communication that must exist between families and staff, reinforcing and helping to assimilate so many new knowledge. The team should aim for a good interaction with the family and be aware that one inadequate information in an improper moment may interfere with the mother/child bond under construction. Thus, for good communication, it is necessary the team constantly worry about the degree of family understanding about the given information⁷.

It was possible to observe in the speeches, the contribution of the diary supporting and preparing the family for discharge:

It helped me to understand more about him, [...] to prepare his little room, what he can eat for six months; it helped me understand more the child. (I1)

You learn to take care of your baby at home, there are those alerts if the baby gets purple, danger signs, it explains everything, it is great because sometimes we do not know everything because here we learn more about the practice, I already know when I can bring him to the hospital, without the doubt: I'll wait, I'll wait; it is a warning. (I10)

In the assistance to the premature and their family in neonatal units, there is a lack of educational materials for the guidance of mothers about home child care, aiming to hospital discharge¹⁰. Thus, it is important to develop strategies and tools for the new demands of these families by entering the mother, gradually, in the care of the child as well as integrating the child into the family and the importance of a preparation plan for the baby's discharge.

The family preparation requires a well-structured and documented approach. It is worth mentioning:

Once existing organization and planning for assistance at discharge, the nurse may use various information media through verbal and non-verbal communication, such as the demonstration of some procedures that should be made by the family at home. Associated with this, the service could create informational folders, manuals using pictorial communication and simple language, with mother's designs running body hygiene, visual and motor stimulation, feeding techniques, among others. The materials used in health education activities encourage the participation of mothers in the learning process. The health professionals working in the NICU have the responsibility to encourage the participation of parents, so that they can overcome the difficulties experienced with the birth of their premature child^{11: 337}.

According to the testimonies, the difficulties experienced by mothers of premature babies could be softened with the information and suitability to their understanding. The diary was essential for family preparation for the baby's discharge because provided information that strengthened the family to felt more able to receive the baby safely at home.

Facilitator in the process of breastfeeding

The analysis of the interviews showed the difficulties and maternal feelings about breastfeeding process, its evolution, and the importance of the received encouragement.

The breastfeeding is very complete, very practical and lactation is also a protective factor, and we know that is a protective factor not only for now but for the future. (I4)

In breastfeeding every time I take the milk, I go over there and mark [in the diary], I love to mark. For me [the diary] was very important, it stimulates a lot, and when he's ready to breastfeed it will be easier and better, it is a control, very good. (I6)

It is important because you can see the time you have more milk [referring to the breastfeed notes], so it's very good, mothers have more attention. [Pause] Now I'm fine, especially in this breastfeeding area. (I9)

The daily also contributed to the encouragement of exclusive breastfeeding (EBF), despite the challenge of breastfeeding a premature. The EBF is the oldest form of intimate contact and protection between the mother and the newborn, with numerous advantages for both¹². In addition to feeding, breastfeeding establishes a closer link between the mother and the baby, giving emotional security and facilitating the adaptation of the child to the extra-uterine environment¹³. One study showed that premature mothers realized in breastfeeding a way to connect gradually with their babies and also a way to soften their guilt for the child to be in that situation¹⁴.

For the premature newborn, the recommendation of breastfeeding has been advocated based on immunological properties of human milk, in its role to stimulate gastrointestinal maturation and the formation of the mother-child bond¹⁴. The mothers often doubt their ability to breastfeeding both in the first days after birth, as during the hospitalization when the baby demands increase, leading them to believe they are unable to breastfeed^14,15.

In the diary, the mother could, and before the baby starts sucking and throughout the hospitalization, note how she was feeling, their daily breastfeeding, the evolution in the milk volume and thus, to control their production by checking its increase and sufficiency to indulge their child or the possibility of volume reduction to make the necessary interventions. Thus, the record offered to the mother a positive reinforcement because when you think positively you seek forms of emotional control, showing up more skills for breastfeeding, beating up the obstacles¹⁴.

Memorial for the Future

The emotional value of the diary for the mother of a premature was mentioned as a way to concrete what is documented; that was experienced.

I think it will be important for her to see how I was a warrior, as I am being and I will be forever. (I2)

I know that in the future, it will not be for me, it will serve for him, and I want one day to come and talk to him, this is not mine, it is yours. [Pause] Sometimes when you speak and no one believes, and he [the diary] will be a test.

It'll be nice to remember the notes [pause] we will remember the good things, the people who helped us, the diary is his story too (I4).

When he has ten years he will know everything that happened to him, it will help him to understand and move on to others, who have premature (I6).

Nice, then she will want to know, and I will know how to answer, if she will asks I will know if I look there, it will be there (I7).

The diary was a memorial for the family. Through the records, the mother keeps alive the experience faced by the baby, by herself and her family, which will have great significance in the future. This aspect revealed by the research refers to the recognition of the Baby's Diary role in the development of family resilience, understood as the ability to cope and react positively to adversity and its potentially negative effects ¹⁶. Discussing the concept, it is argued:

The resilient subject retains the marks of the faced adversity. They are present in their memories, in their feelings. Their story remains in their memory, but the person can recover because they find the support that helps them to continue outlining a trajectory that, from the social and cultural point of view, it can be considered positive^16:97.

The speeches of the mothers showed that coping strength and the need to keep it forever in the family memory, remembering this lived troubled period and how it was bravely overcome by her and her son. According to the mothers, the Baby's Diary will serve as a written prove, as a pride reason, a prize.

CONCLUSION

This study demonstrated the significance of the Baby's Diary as a supportive care in the different moments of the experience with prematurity, highlighting anxieties, needs, fears, apprehension and emotional conflicts of the VLBW newborn mother. It was also highlighted its contribution to the strengthening of breastfeeding, mother-child bonding and affection, collaborating in facing the difficulties of premature's family and the record of their history.

The diary can be used as an intervention mechanism to promote family support for coping the hospitalization, and contribute to learning about prematurity and their care.

REFERENCES

1.Ferecini GM, Fonseca LMM, Leite AM, Daré MF, Assis CS, Scochi CGS. Perceptions of the premature mother's about the experience in an educational program. Act. Paul. Nursing. São Paulo, 2009; 22: 250-56

2.Gaíva MAM, Neves AQ, Silveira AO, Siqueira FMG. The discharge in neonatal intensive care units: perspective of the health team and family. Min. Nursing Magazine. 2006; 10: 387-92.

3.Rugolo LMSS. Growth and long-term development of extreme premature. J. Pediatr. 2005; 8: 101-10.

4.Bengozi TM, Souza SNDH, Rossetto EG, Radigonda B. A support network to premature family. Healthcare Science. 2010; 9: 155-60.

5.Hennig MAS, Gomes MASM, Morsch DS. Humanized care to low-weigh newborn. Kangaroo method and family-centered care: correspondences and specificities. Physis. Public Health Magazine. Rio de Janeiro, 2010; 20: 835-52.

6.Bardin, L. Content analysis. Lisbon. Ed; 70, 2004.

7.Ministry of Health (Br). Department of healthcare. Department of Strategic Programmatic Actions. Humanized care to the low weight newborn: Kangaroo method. Brasília: Ministry of Health Publisher. 2011;

8.Scochi CGS, Kokuday MLP, Riul MJS, Rossanez LSS, Fonseca LMM, Leite AM. Encouraging the mother-child bond in prematurity situations: the nursing interventions at the Ribeirão Preto Clinic Hospital. Latino-American Nursing Magazine. 2003; 11: 539-43

9.Martinez JG, Fonseca LMM, Scochi CGS. Participation of the mother's/father's in the care of premature children in a neonatal unit: attributed meanings by the health team. Latino-American Nursing Magazine. 2007; 15: 239-46.

10.Fonseca LMM. Care for premature babies: educational prime for maternal guidance. Dissertation (Master's Degree). Ribeirão Preto Nursing School – São Paulo University. Ribeirão Preto. 2002;

11.Rabelo MZS, Chaves EMC, Cardoso MVLML, Sherlock MSM. Feelings and expectations of mother's in the discharge of premature newborn. Acta. Paul. Nursing 2007; 20: 333-37.

12.Lamounier JA et al. Factors related to breastfeeding in teenage mother's. Medical Magazine. Minas Gerais. Belo Horizonte, 2003; 13: 27-29.

13.Escobar AMU et al. Breastfeeding and cultural socioeconomic status: factors that lead to early weaning. Medical Magazine. Maternal Health. Infant. Recife, 2002; 2: 253-61.

14.Lee TY, Lee TT, Kuo SC. The experiences of mothers in breastfeeding their very low birth weight infants. Journal of advanced nursing. 2009; 65: 2523-31.

15.Gorgulho FR, Pacheco STA. Breastfeeding of premature in a neonatal unit: maternal experience. Esc. Anna Nery. 2008; 12: 19-24.

16.Silva MRS, Lunardi VL, Lunardi FWD, Tavares KO. Resilience and health promotion. Context Text – nursing. Florianópolis, 2005; 14: 95-102.