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Informational needs of parents of sick neonates
N B Perlman1, J L Freedman, R Abramovitch
1Department of Psychology, University of Toronto, Ontario, Canada.
Insights
Parents in neonatal intensive care units want comprehensive medical information, but recall of diagnosis and prognosis differs significantly from physician delivery. Management information was most helpful and recalled best.
Area of Science:
- Neonatal Intensive Care
- Medical Communication
- Parental Education
Background:
- Parents of neonates in intensive care units require clear medical information.
- Understanding parental information needs is crucial for effective communication.
Purpose of the Study:
- To assess parental needs for medical information following initial neonatologist conferences.
- To identify discrepancies between physician-delivered and parent-recalled information.
Main Methods:
- Interviewed 61 parents of 43 neonates within 3 days of their first neonatologist conference.
- Audiotaped physician-parent conferences and parent-investigator interviews.
- Categorized and rated information provided and recalled by parents.
Main Results:
- Physicians provided detailed diagnostic information (77%) but parents recalled it less (39%).
- Parents recalled prognosis (33%) and management (66%) information better than provided.
- Management information was deemed most helpful (90%) by parents.
Conclusions:
- Parents desire complete medical truth, prioritizing management information.
- Significant discordances exist in recall of diagnosis and prognosis.
- Further research should explore optimal information content for parents in neonatal intensive care.
Abstract:
Sixty-one parents of 43 neonates in a neonatal intensive care unit were interviewed within 3 days of their first conference with the neonatologist to assess their needs for medical information. The conference with the physician and the interview with the investigator were audiotaped. Information given by the physician and information recalled by the parents was categorized and rated by the investigator. The physicians gave very detailed information about diagnosis in 77% of cases whereas 39% of the parents recalled diagnostic information in great detail. Respective percentages for prognosis were 16 and 33; for current management (eg, investigation, therapy), 28 and 66; and for cause of illness, 16 and 18. The statistical significance of the differences between the very detailed information int he physician-parent conferences and in the parent-investigator interviews was, by category, less than .002, less than .041, less than .004, and not significant, respectively. Information in the respective categories was described as "most helpful" by 20%, 67%, 90%, and 8% of parents. All but one of the parents stated that they wanted the whole truth. Physician uncertainty in providing information was significantly associated with severity of illness. It is concluded that while parents wanted information in all categories, they paid most attention to that relating to management. Physician-parent discordances with respect to information about management, diagnosis, and prognosis suggest directions for future investigation of the optimal content of information for parents in this context.