Parental information needs in chronic renal failure and diabetes mellitus

The information needs of parents of children with end stage renal failure ( ESRF) or with insulin dependent diabetes mellitus (IDDM) were assessed by q uestionnaires over a 2-year period. Questionnaires were posted on seven occ asions at 4-monthly intervals and were sent to both mothers and fathers. Mo st information needs were reported to be for detailed test results, for new information about the condition and about the child's future social develo pment. Questions responsible for the three highest scores were concerned wi th the future: the child's fertility; their social, career and marriage pro spects; and the hope for a new improved treatment. For the IDDM mothers, sc ores were significantly different depending on age of the child (P = 0.02). Change in treatment mode had no significant effect on the information need s of parents of children with ESRF (P = 0.81). Occupation was significantly associated with the mean general information needs scores for parents, wit h occupations of a lower socioeconomic status associated with higher inform ation needs scores. There were no significant differences between the repor ted 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 fath ers 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.