Information support as an element for advising parents of preterm infants: a guide for development follow-up services during the first year of life

Abstracts

INTRODUÇÃO: A literatura aponta o alto risco de distúrbios biológicos e psicossociais aos quais o bebê pré-termo está susceptível, necessitando de atenção diferenciada daquela dada ao bebê a termo. OBJETIVO: Elaborar um guia de orientação e acompanhamento do desenvolvimento no primeiro ano de vida para pais que freqüentam um serviço de acompanhamento do desenvolvimento de bebês. MÉTODO: Os critérios para inclusão dos participantes foram: ser pais de bebê pré-termo de zero a seis meses de idade corrigida que não apresentavam doença neurológica e não necessitaram de intervenção fisioterápica. O presente estudo, de caráter qualitativo, empregou, na etapa de coleta de dados, a observação direta e a entrevista, efetivadas com as mães e profissionais deste serviço de acompanhamento do desenvolvimento de bebês. A elaboração do Guia baseou-se nas análises das observações dos atendimentos no serviço, na freqüência das respostas das entrevistas com profissionais e mães sobre necessidades e dúvidas no manuseio e cuidado com o bebê e a associação com a literatura. RESULTADOS: Obteve-se um guia contendo informações sobre o desenvolvimento do bebê, distribuído nos quatro primeiros trimestres de vida, e o alerta sobre a importância de calcular a idade corrigida para o acompanhamento adequado dos marcos do desenvolvimento. CONCLUSÃO: A utilização deste guia pode ser feita por diferentes profissionais da saúde e por aqueles que desenvolvem atividades educativas para pais.

estimulação precoce; recém-nascido pré-termo; orientação; guia; desenvolvimento

METHODOLOGICAL ARTICLES

Information support as an element for advising parents of preterm infants: a guide for development follow-up services during the first year of life

Martinez CMS^I,II; Joaquim RHVT^I; Oliveira EB^III ; Santos IC^IV

^IDepartament of Occupational, Federal University of São Carlos UFSCar, São Carlos, SP Brazil

^IIPostgraduate Program on Special Education, UFSCar, São Carlos, SP Brazil

^IIIMunicipal Rehabilitation Center, São José do Rio Preto, SP Brazil

^IVSão Camilo Hospital and Maternity Hospital, São Paulo, SP Brazil

^{Correspondence to}

ABSTRACT

Introduction: The literature shows that preterm infants are at high risk of biological and psychological disorders and consequently require a higher level of care than is provided for full-term infants. Objective: To draw up a guide advising on development follow-up during the first year of life, for parents who attend a child development follow-up service. Method: The inclusion criteria were that participants should be parents of preterm infants with a corrected age between zero and six months that did not present neurological diseases and did not require physiotherapeutic intervention. This study was of qualitative nature. Data collection was by means of direct observation and interviews with mothers and with the professionals at this infant development follow-up service. The guide was produced based on analysis of the observations on attendance at the service, frequency of responses in the interviews with professionals and mothers regarding needs and doubts about handling and caring for infants, and associations with the literature. Results: A guide was produced containing information on infant development, divided into the first four trimesters of life. It draws attention to the importance of calculating corrected ages in order to adequately follow up development markers. Conclusions: This guide may be used by a variety of health professionals and by professionals who develop educational activities for parents.

Key words: early stimulation, preterm neonate, advice, guide, development.

INTRODUCTION

The first years of life are of great importance for children's development, considering that the period of greatest neuronal plasticity occurs during this phase. Thus, special care is provided for babies who have the chance of presenting problems during this period because of different events that are characterized as risk factors¹. Such factors lead the children exposed to them to present larger susceptibility to delays or disorders during their motor, mental, sensory and emotional development. Definition of the risk and investigation of these children's situation makes it possible to prevent or minimize the sequelae caused by the appearance of deficiencies, through stimulation practices and early intervention².

The literature shows that, among all the risk conditions neonates may present, prematurity is the one that presents the highest rates, also because this condition is, in itself, a risk for other factors such as: metabolic disorders, intracranial hemorrhages and very low weight, among others, thereby constituting a veritable sum of risk factors³. According to the American Academy of Pediatrics, preterm neonates are defined as those born up to the last day of the 37^th week of gestational age. Full-term neonates are born between the 38^th and 42^nd week and post-term neonates after the 42nd week⁴.

Technological and scientific evolution of neonatal care has brought better survival opportunities for neonates at risk. It is becoming more common to find preterm infants with gestational ages that are considered to be a critical period for a variety of developmental dysfunctions. The traditional intensive care unit (ICU) environment generates sensory overload for babies and insufficient social interaction with professionals and family⁵.

For preterm babies, the debility of their own organisms and the medical interventions may interfere with the ability to have adequate sensory-motor experiences during the time of hospitalization⁶. From this perspective, in neonatal intensive care units, the emphasis is on the baby's biological survival, but little attention is given from the viewpoint of the emotional and social needs of preterm infants⁷. Most of the stimulation they receive is of an intrusive nature, such as injections, catheters and physical examinations⁸. However, there has been some investment in humanizing the care strategies for preterm neonates during the initial and subsequent moments of their lives.

The first months of life comprise a fundamental time for following up the progress of infant development, considering that there is a direct relationship between stimulus and development, i.e. minimal stimulation levels will assure minimal levels of development. For development to exceed the minimal levels, rich and varied cognitive, affective and social experiences must be provided for infants⁹. The importance of following up preterm infants' development in specialized services is evident. At these services, contact is gradually established with infants, by means of stimulation at the times when they develop their contacts with their mothers and begin others with their families.

Parents and the professionals who are usually involved in stimulation and follow-up proposals, must understand that it is not enough to only offer additional or more intense stimulation to the preterm. The most correct approach would be to select appropriate types of stimulation and adaptation. This stimulation would be more appropriate if it were based on the signals that are emitted by the infant, i.e. so-called contingent stimulation¹⁰. Babies' thresholds for assimilating stimuli are so underdeveloped and so easily surpassed that they are susceptible to everything that happens around them. These factors must be taken into consideration when parents are instructed to stimulate their infants, because the hypersensitive reactions of preterm babies are said to make the parents feel distant from their child. Nevertheless, the literature also indicates that parents must never feel discouraged in touching, talking to and playing with their babies, since the sensory stimuli to which preterm infants are most sensitive are the ones that are most important ones for their future development^11,12.

It is believed that one of the ways of favoring the relationship between parents and infants is to make handling and care suggestions available with regard to infant stimulation. During this process, the most important point to be considered is each infant's individuality, thus making it possible for the parents to identify their child's potential. Resources that provide backing for situations in which parents are given guidance about following up and stimulating their baby's development need to be used. Such resources need to be capable of reacting to likely problems that occur.

From the above presentation, it can be seen that it is important to produce and offer educative and therapeutic resources to give power to the actions provided by services following up the development of infants who are at risk, and particularly the provision of guidance actions for parents.

Thus, the aim of this study was to identify and characterize the demand from preterm infants' parents and from the professionals who deal with this clientele, with regard to what would be important in preparing the contents for a guide giving advice for following up infant development during the first year of life.

METHOD

Participants

The participants in this study were six mothers of preterm infants of between zero and six months of corrected age, who were attending a follow-up service for infant development, and the professionals who, at the time of the study, were providing attendance at this service: two pediatricians, two physical therapists and one nursing auxiliary.

Place

The follow-up program was undertaken in a medium-sized city in the interior of the State of São Paulo, in partnership with municipal authorities and a higher education institution. The users were attended within the Brazilian national health system (Sistema Único de Saúde, SUS) and received follow-up until the age of two years.

Materials and equipment

The materials and equipment used included: cassette recorder and tape; microcomputers and printer; observation guidebook for visits to the follow-up service for infants at risk; semi-structured interview guidebook directed towards the parents; interview guidebook directed towards the professionals.

Procedure

This study was of qualitative nature and used direct observation and interviews during the data gathering stage¹³.

Visits to the follow-up service were made with the aim of carrying out direct observations of the routine at that location; the needs and doubts presented by the parents; and also the actions performed by the professionals.

The next stage consisted of applying interviews to the professionals in order to understand how the service worked; to get to know the profile of the population attended; and to enumerate the most frequent doubts presented by the parents at the times of interactions with their babies. Interviews were also conducted with the parents, to investigate their doubts in relation to their child's care and day-by-day development.

After obtaining these data, the interviews with the mothers and professionals were fully transcribed and analyzed from a qualitative focus¹⁴. In qualitative studies, the data that have been gathered are analyzed in smaller units, and then grouped into interrelated categories, thereby making it possible to emphasize patterns, themes and concepts¹. Qualitative studies are inductive, i.e. they are developed from concepts and ideas found in the information gathered, instead of collecting data to confirm theories and hypotheses. They are characterized by the absence of numerical measurements and statistical analyses, and they examine more profound and subjective aspects of the topics studied. They presuppose the use of procedures such as verbal representation of data¹⁴.

From reading the interviews, thematic nuclei that appeared from the mothers' and professionals' reports were highlighted. The thematic nuclei in the interviews with the mothers concerned doubts, fears and expectations, knowledge about infant development and possible benefits that a guide would bring for the development of their babies. The themes highlighted in the interviews with the professionals related to the routine at the service, the parents' doubts and the usefulness of guide containing advice for parents.

The data obtained from the interviews with the mothers and professionals, and also data from reviewing the literature, were compared to identify the points for which there was a consensus and those for which the content presented either "conflicts" or incompatibility. Thus, the data for which there was a consensus were selected for preparing the guide and non-consensual points were included in a complementary perspective.

To analyze the observation sessions, the actions from the parents, babies and professionals were categorized.

All the selected material was read and reread, seeking to pick out information about the appropriate moment for beginning of each kind of stimulation; the type of stimulation considered most appropriate (tactile, auditory, proprioceptive or vestibular); the order of introducing this stimulation; the nature of the stimulation (unimodal or multimodal); the identification of the most appropriate person/professional to performing the stimulation on the infant; and finally, the type of follow-up for the infant's development.

Ethical matters

The present study was submitted to and approved by the Ethics Committee of UFSCar under the number 063/03.

RESULTS AND ANALYSIS

In view of the large quantity of data obtained through the observations and interviews, it was necessary to make a selection of the themes, by means of appropriate analysis, using the following criteria: 1) greatest frequency; 2) themes within the routine of the work carried out by the physical therapy professional; 3) emphasis on motor and cognitive characteristics cited in the data of the present study and in the literature analyzed; 4) need to "correct the age" of preterm babies as a function of following up their development mileposts and the possible and desirable stimulation every three months.

The results presented below bring in information from both the interviews and observations carried out on the professionals and mothers separately.

The professionals

When analyzing the data, it could be seen that the guidance given by the professionals at this service, were not offered either systematically or even in standardized form. According to the professionals' reports, parents present different needs when it comes to guidance. However, some actions can be highlighted as common elements that are related to general stimulation. Thus, from the professionals' point of view, creation of an informative resource might benefit the provision of information about development and might be used at the time considered most pertinent for each family (parents).

The table below presents the thematic nuclei investigated and their respective categories, which emerged from the information supplied at the interviews, from the professionals who provide attendance at the follow-up service for infants.

From the data obtained, it can be seen that, according to these professionals, creation of the guide would be very good for the service, because "( ) it will act towards promoting children's development ( ) by showing mothers what development is, the possibilities and expectations relating to their babies".

To supply suggestions on how to deal with babies, the professionals try to understand the reasons that make the parents believe that their infant is or is not well and use the "language of mothers" to explain to them that "...although sometimes everything seems to be fine, in the future, there may be some sequelae ".

Regarding the parents' doubts, the doctors say they are very insecure and that the guidance offered to them, when the baby is discharged from the nursery, is minimal. The main doubts are in relation to breastfeeding, weight gain and how to deal with preterm infants, and it is always necessary to emphasize the importance of stimulation.

The mothers

The mothers who participated in this study were between 16 and 31 years old, and all of them were multiparous. Their infants had been born preterm after 24 to 36 weeks of gestation, and needed to be kept in the intensive care unit for a period of time that ranged from six days to two and a half months and in the nursery for between three days and one month. The intercurrences reported related to episodes of cardiac arrhythmia, apnea crises, pneumonia, anemia, jaundice and inguinal hernia.

Table 1

Table 2

Figure 1

The table below presents the information supplied by the mothers who were interviewed, at the follow-up service for infants.

Concerning infant development, it could be seen that, among the participating mothers, some already had experienced some kind of contact with other infants (older children or siblings) and another three reported that they did not have any knowledge about normal infant development. All of them agreed that it is necessary to be more careful with a preterm infant. All of the mothers reported having played with or talked to their babies and that they had been advised to do so by the follow-up service.

More than doubts, the mothers seemed to have more fears and expectations. The fears mentioned related to the possibility of the infant choking and getting a bad scare, "...fear of going back to what it was like when he was born". The mothers had expectations regarding their children's development, for example, whether they would walk and sit up, and when this would happen, and whether they would hear and see properly. Other than this, their fears related to the procedures experienced during the hospital stay: "everyone said she might have problems because she was kept on oxygen in the incubator for too long".

The results from the observations, interviews and the literature review enabled content selection for compiling a stimulation and advice guide for the parents of preterm infants.

DISCUSSION

The situation investigated pointed towards the need to prepare an information support instrument for the parents of preterm infants. It was found that this was one of the requests from the professionals who deal daily with families, and from the parents of the preterm infants, in order to promoting follow-up and stimulation of the infants. An instrument that would help the families with their individual needs was sought, such that it would provide the professionals with a foundation to favor dialog in guidance situations, thereby boosting the actions of these services. From the results obtained via the interviews and observations, it was found that the priority in guidance should be to favor procedures that help in the "dosages" of types and intensities of infant stimulation, thus encouraging the parents to stimulate and interact with their children as long as they do not surpass the hypersensitive individual thresholds of their preterm infants¹¹.

The sample studied showed that, for this intervention, it was sought to have the family as a partner in the development promotion process. In this respect, a study in the literature¹⁵ indicates that parents need support so that they can take on their roles. The provision of information in clear and simple language comes with a positive attitude in this partnership. That study also points out that it is necessary to focus on information and on training paternal abilities.

From the results found through interviews with the professionals, in the present study, it could be seen that the information was not being supplied in a systematic and standardized way. Therefore, the guide was prepared with the aim of offering organized, systematic and illustrated information presenting an overall approach towards development, for the different professionals who work with preterm infants. It was sought to draw up a practical instrument that could intermediate, through contingent stimulation, in the relationships between professionals and mothers in daily practice at the service studied. In agreement with the literature, these health professionals appear to be people who can supply information in a way that is comprehensible and satisfactory¹⁶, in relation to avoiding risks or minimizing problems within the sphere of development and the family.

A study¹⁶ developed among the mothers of children with special needs showed that the husband and the family may be important sources of emotional and instrumental support, but cannot satisfy the mothers' information support needs. The results from the present study showed that, within the families of these children, the presence of support comes from different sources (husband, sisters, mother-in-law or older sons and daughters) at the time when they are dealing with the preterm infant. The follow-up service for infant development is also a support for such families, in view of the innumerable situations of adversity of a biological, psychological and environmental nature that they experience¹⁷.

One of the limitations of this study relates to the fact that the investigation was carried out at only one development follow-up service and with a limited number of families and professionals. However, it is emphasized that the use of two strategies for data gathering interviews and observation contributed towards comprehension of the phenomenon investigated.

Although the Brazilian literature indicates that investment in attending to this population is taking place, through the formation of multidisciplinary teams¹⁸ that attend to babies not only clinically but also in relation to overall development, it also points out that there is a lack of educational and instructional material to assist in guidance for these mothers.

CONCLUSION

The aim of this study was to identify and characterize the demand from preterm infants' parents and the professionals who deal with this clientele, with regard to what would be important in preparing the contents for a guide giving advice for following up infant development during the first year of life. The professionals believed that it was important to prepare an information instrument to attend to the parents' insecurity at the time when guidance is supplied at the nursery. For the mothers, such an instrument forms important support for preventing and minimizing fears and supplying expectations regarding development. Based on the demands and needs of the parents and the professionals who are involved daily in the processes of stimulation and development follow-up, a tool was prepared for use as support for the families and for the service studied.

It is believed that the information presented may serve as backing for other infant follow-up services and that, without doubt, it can be improved through the development of future research in this field.

REFERENCES

Received: 03/02/2006

Revised: 29/06/2006

Accepted: 22/11/2006

* In qualitative studies, the data that have been gathered are analyzed in smaller units, and then grouped into interrelated categories, thereby making it possible to emphasize patterns, themes and concepts. Qualitative studies are inductive, i.e. they are developed from concepts and ideas found in the information gathered, instead of collecting data to confirm theories and hypotheses. They are characterized by the absence of numerical measurements and statistical analyses, and they examine more profound and subjective aspects of the topics studied. They presuppose the use of procedures such as verbal representation of data¹⁴.

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Correspondence to:

Claudia Maria Simões Martinez

Departamento de Terapia Ocupacional

Rod. Washington Luiz, Km 235, CP 676

CEP 13565-905, São Paulo, SP - Brazil

Publication Dates

• Publication in this collection
  23 Mar 2007
• Date of issue
  Feb 2007

History

• Accepted
  22 Nov 2006
• Received
  03 Feb 2006
• Reviewed
  29 June 2006