Communicating with parents of premature infants: who is the informant?

Abstract

Objectives:To determine what sources of information are most helpful for neonatal intensive care unit (NICU) parents, who provides NICU parents with the information, and also what expectations parents have regarding obtaining information.Study design: A 19-item questionnaire was given to the parents of infants 32 weeks or younger prior to discharge from the NICU.Results: Out of the 101 parents who consented, almost all of the parents (96%) felt that 'the medical team gave them the information they needed about their baby' and that the 'neonatologist did a good job of communicating' with them (91%). However, the nurse was chosen as 'the person who spent the most time explaining the baby's condition, 'the best source of information,' and the person who told them 'about important changes in their baby's condition' (P<0.01). Conclusion:Although the neonatologist's role in parent education is satisfactory, the parents identified the nurses as the primary source of information. Journal of Perinatology (2006) IntroductionOne out of every eight babies is born prematurely in the United States. The birth of a premature infant is a stressful event. The major concerns of neonatal intensive care unit (NICU) parents' during this stressful time are their informational needs, their grief response, their parent-child role development, stress and coping, and social support. [1][2][3][4] In most studies, parents communicated that their need for information was one of their most important concerns. Parents want 'clear and honest information,' 3,5 and have commented that they have had 'difficulty in obtaining accurate and up-to-date information'. 6 Obtaining information is important because it helps parents assume their parenting role, gives them some sense of involvement and control while decreasing their feelings of stress, and helps them cope with the fear and uncertainty of the situation.2,7 Without adequate communication with the medical team and adequate teaching, parents are at risk for maladjustment and preterm infants are at risk for abuse and neglect, failure to thrive and poor social adjustment. 2,7,8 Owing to the profound consequences of poor doctor--patient communication and the concerns of NICU parents, communication was made one of the priorities of the 'Principles of Family Centered Care' published in 1993. 9 The number one principle states that 'family centered neonatal care should be based on open and honest communication between parents and professionals on medical and ethical issues'. Although previous research has focused on parent education, 10 the times for teaching, 5,7 and the internet as a source of information, 12 there has been little research in regards to the specifics of 'open and honest communication'. It is not known from whom or from what source parents want to receive the 'clear and honest information'.The objectives of this study were to determine what sources of medical information are most helpful for NICU parents, who provides parents with the medical information, and also what expectations ...

Analysis of enacted difficult conversations in neonatal intensive care

“…Actor-family members used statements to ensure that they correctly understood the information provided, such as recapping what the practitioners had said and paraphrasing, more frequently than practitioners. Previous studies have found that clarity and honesty of information is of pivotal importance for families in pediatric 17,22 and neonatal intensive care settings, 23 and is associated with higher parent ratings of the quality of care. Unfortunately, information regarding patient's diagnosis, treatment and prognosis is often not communicated effectively to family members in ICU 24 and NICU.…”

Adolescent mothers in the NICU: how much do they understand?

“…A significant minority, however, did not understand the seriousness of their infant's acute health problems, even when those health problems were critical and/or lethal. Similar to adult parents in the NICU, 13 many teens told us that they primarily received information about their infant from nurses. They described these conversations as consisting mostly of daily updates, with minimal discussion of the infant's overall condition or management plans.…”

Dimensões qualificadoras para a comunicação de notícias difíceis na unidade de terapia intensiva neonatal Dimensions qualifying for communication of difficult news in neonatal intensive care unit

“…21 Among the strategies, providing daily bulletins and the daily tracking of the relatives for a professional reference, were highlighted as expectations of mothers and professionals, who understand how tools for the communication of information on the clinical conditions of the child, as well as the need and resource scheduling surgical and therapeutic, because it would facilitate the understanding and the daily monitoring of the child by the mother and the family: Designate a person as a reference and support for the family proved to be highly effective because these people help parents feel less stressed, more informed, confident and prepared for the process of hospitalization and discharge. 22 For the authors, this strategy is coated in benefits for the staff of the NICU and for the quality of care in this environment.…”