Parents’ informational needs at the birth of a baby with a surgically correctable anomaly

Abstract

Previous studies have assessed informational needs of parents of sick fetuses, neonates and children to identify favourable patterns of physician-parent interaction. The aim of this paper was to assess parents' informational needs before and after the operation when the one affected by a surgically correctable anomaly is a newborn. In the period ranging from 1997 to 2000 all couples with newborns undergoing major surgical procedures at birth, at the Newborn Surgery Unit of the Hospital Bambino Gesù, were surveyed by means of a questionnaire. Thirty couples form the object of the study. The two genders did not show significant difference in any of the considered items. All 30/30 mothers (M; 100%) and 29/30 fathers (F; 97%) had never heard about the anomaly before the diagnosis was established in their baby. All parents (100%) stated that it would be better if the surgeon informed them with written educational material. Principal informational needs before operation regard: the description of the anomaly (M = 10; F = 11) and the prognosis in terms of survival chances of the baby (M = 17; F = 15); after surgery the cause of the anomaly (M = 5; F = 3); the steps of the recovery process (M = 10; F = 12) as well as the quality of their baby's life (M = 9; F = 9). In the immediate perioperative period the surgeon should well address parents' informational needs, which may significantly differ from his communication plan.

Psychosocial burden and quality of life in parents of children with anorectal malformation

“…[15] This is especially so when the child with ARM suffers from postoperative constipation or fecal incontinence. Failure of the clinicians to understand the needs and provide necessary support may lead to dissatisfaction among the parents.…”

“…[15] Parents need information on not only the child’s malformation and the surgery but also the functional prognosis in the later life. It is at this stage that the parents feel the need for appropriate psychological support.…”

Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services

“…One possible explanation for these unmet information needs is parents’ expectations and different perceived outcomes of communication between parents and healthcare professionals. Studies have indicated that information is an important part of parental and familial adjustment [ 34 , 35 , 36 , 37 ], representing not only the need for understanding of the health condition, future impacts, and care but also providing a sense of control and satisfying the need for reassurance [ 9 , 34 , 38 , 39 , 40 ]. Hence, parents might have felt that they would require more information, even though additional information could not be provided at the time or in the way parents would like to have received.…”

The Effect of Ostomy on Pediatric Patient and Family in Nursing

“…Besides, this may be accompanied by physical, psychological, and psychosocial problems. It has been considered that training on ostomy care given to the families and children will enhance their care skills, decrease complication risk, and facilitate adaptation to ostomy by reducing anxiety and stress on the family and children (Aite et al, 2006; Sheikh et al, 2006).…”