A experiência da família ao cuidar de bebês nascidos com baixo peso nos primeiros seis meses após a alta hospitalar.

Abstract

The goal of this study was to identify how it is for the family to take care, at home, of a low birth weight child during the first six months after hospital discharge. This is a longitudinal descriptive study of qualitative approach and it was developed together with six families living in Maringá, PR-Brazil. The data was collected from February to September 2008 through recorded semi-structured interviews and non-systematic observation in four meetings: one week, one month, three and six months after hospital discharge. To analyze the information, the content analysis proposed by Bardin (1977) was used, from which five thematic categories emerged: feelings resulting from the presence of the baby at home; daily baby care; family support network after hospital discharge; facing baby health incidents and difficulties in caring. Results revealed that taking care of a low weight baby was, for the families, an experience interchanged with cheerful and anguishing moments. Homecoming was filled with happy feelings and tranquility as it meant, at first instance, that the baby was ready to go home and it consisted in an opportunity to dedicate love and affection to the new family member. The reality experienced day by day, however, unleashed a series of feelings and the apprehension and fear, be it of hospital readmission, of losing the baby or of not being able to provide him proper care were the most frequent. At home, the mothers (main responsible ones for the baby physical and psycho-affective care) acted according to their beliefs and previous experiences, valuing professional orientation especially on how to prevent the baby from losing weight. Therefore, they reproduced the hospital care at home. Some of them even made use of the diet supplement the same way it was done at the hospital. The help from the support network was valued by the families, highlighting the participation of the father and grandfathers while caring for the baby as well as for the other children or on domestic chores. Facing incidents concerning the baby's health, mothers showed themselves active, using their own means to seek for orientation from more experienced relatives or medical attention. On these first months at home, families perceived several difficulties while caring for a low birth weight baby and highlighted the difficulty to reach healthcare professionals and some of the healthcare services, which lead them to pay for a private healthcare plan for the child, even though facing financial problems. Other mentioned difficulties were related to the daily routine, characteristics of the low birth weight and premature babies, financial situation, personal issues and the necessity to get back to work. As the period of the study elapsed, the families (through their mothers) showed themselves to be strengthened and secure concerning low birth weight baby care. The conclusion was that the families from these low birth weight babies in study presented the need of professional follow-up after hospital discharge, due to the complexity of the situation they were experiencing. The healthcare team, though, was not present at their homes for the follow-up on the low birth weight babies and the nursing remained practically invisible to the families of these babies after hospital discharge. Home care valuing the families' participation with their beliefs and 12 knowledge could positively influence the quality of the care offered by them to their low birth weight babies, ensuring adequate growth and development or, at least, a better quality of life for those babies with irreversible sequelae. Therefore, it is urgent that everyone, supervisors and professionals, get involved so that the care practices to low birth weight babies be close to what is being theoretically proposed and recommended for some time now when it comes to public policies on child healthcare.