J Collier1, H Pattison, A Watson, C Sheard. 1. Division of Child Health, Queen's Medical Centre, University of Nottingham, UK. jacqueline.collier@nottingham.ac.uk
Abstract
UNLABELLED: The information needs of parents of children with end stage renal failure (ESRF) or with insulin dependent diabetes mellitus (IDDM) were assessed by questionnaires over a 2-year period. Questionnaires were posted on seven occasions at 4-monthly intervals and were sent to both mothers and fathers. Most information needs were reported to be for detailed test results, for new information about the condition and about the child's future social development. Questions responsible for the three highest scores were concerned with the future: the child's fertility; their social, career and marriage prospects; and the hope for a new improved treatment. For the IDDM mothers, scores were significantly different depending on age of the child (P = 0.02). Change in treatment mode had no significant effect on the information needs of parents of children with ESRF (P = 0.81). Occupation was significantly associated with the mean general information needs scores for parents, with occupations of a lower socioeconomic status associated with higher information needs scores. There were no significant differences between the reported mean general information needs scores of parents of children with ESRF and of parents of children with IDDM (P = 0.69) or between mothers and fathers mean general information needs scores (P = 0.58). CONCLUSION: Multidisciplinary team members need to tailor information to the needs of the individual families and be sensitive to socioeconomic factors and communication issues.
UNLABELLED: The information needs of parents of children with end stage renal failure (ESRF) or with insulin dependent diabetes mellitus (IDDM) were assessed by questionnaires over a 2-year period. Questionnaires were posted on seven occasions at 4-monthly intervals and were sent to both mothers and fathers. Most information needs were reported to be for detailed test results, for new information about the condition and about the child's future social development. Questions responsible for the three highest scores were concerned with the future: the child's fertility; their social, career and marriage prospects; and the hope for a new improved treatment. For the IDDM mothers, scores were significantly different depending on age of the child (P = 0.02). Change in treatment mode had no significant effect on the information needs of parents of children with ESRF (P = 0.81). Occupation was significantly associated with the mean general information needs scores for parents, with occupations of a lower socioeconomic status associated with higher information needs scores. There were no significant differences between the reported mean general information needs scores of parents of children with ESRF and of parents of children with IDDM (P = 0.69) or between mothers and fathers mean general information needs scores (P = 0.58). CONCLUSION: Multidisciplinary team members need to tailor information to the needs of the individual families and be sensitive to socioeconomic factors and communication issues.
Authors: Alan R Watson; Wesley N Hayes; Karel Vondrak; Gema Ariceta; Claus Peter Schmitt; Mesiha Ekim; Michel Fischbach; Alberto Edefonti; Rukshana Shroff; Tuula Holta; Aleksandra Zurowska; Gunter Klaus; Sevan Bakkaloglu; Constantinos J Stefanidis; Constantinos Stefanidos; Johan Van de Walle Journal: Pediatr Nephrol Date: 2013-07-11 Impact factor: 3.714
Authors: Anastasia Albanese-O'Neill; Desmond A Schatz; Nicole Thomas; Jay M Bernhardt; Christa L Cook; Michael J Haller; Angelina V Bernier; Janet H Silverstein; Sarah C Westen; Jennifer H Elder Journal: JMIR Diabetes Date: 2019-08-06