Information Needs of Families on the Health/Disease of Preterm Infants in a Neonatal Intensive Care Unit

Abstract

Objective: to identify the information needs of the families of preterm infants hospitalized to the Neonatal Intensive Care Unit on health/disease. Method: exploratory study, with a qualitative approach, performed with 33 relatives of preterm infants admitted to the Neonatal Intensive Care Unit, through a semi-structured interview, recorded in audio, transcribed and analyzed with the aid of the Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires software. Results: two categories were identified, which are called: Reality versus expectation of obtaining information about the preterm infant; and Information on health/disease on-line: useful, positive and unattractive aspects. Conclusion: it has been found that the information needs of family members are wide, and different means are employed to satisfy them, ranging from the traditional and every day to the use of technological means to find data and used for different purposes.

Informational support for families of children with autism spectrum disorder

“…This increase in connectivity has been beneficial for many people, in terms of access to information. However, the families themselves recognize negative aspects, such as lack of quality of information (20) , excess, imprecision (12) and less attractive data (18) , such as the negative effects of medication use reported in this study.…”

“…Therefore, it is important to guide family members regarding the reliability of the content freely available on the internet, as they are not always scientifically based (18) . In addition, it must be considered that many families in an unfavorable socioeconomic condition may become vulnerable in the face of insecure information, since they may not know how to evaluate them.…”

“…On the other hand, it turns out that families use the internet to clarify aspects that are not understood, reduce anxiety, establish a form of communication with professionals and know how to position themselves in relation to the adopted therapeutic approaches (18) . Another study suggested the use of the internet as a strategy to obtain knowledge to address the lack of support received from formal sources (6) .…”

“…Another study suggested the use of the internet as a strategy to obtain knowledge to address the lack of support received from formal sources (6) . Family members would like to receive clearer information, in a reserved place, with more time for professionals to explain doubts and the technical terms used (18) .…”

“…What can be shown through these results is the movement of change generated by the technologies. This causes society, especially health professionals, to develop strategies with health managers to manage these demands so that, in addition to meeting the families' information needs, they provide safe resources for families (18) .…”