What Parents of Children Who Have Received Emergency Care Think about Deferring Consent in Randomised Trials of Emergency Treatments: Postal Survey

摘要: OBJECTIVE: To investigate parents' views about deferred consent to inform management of trial disclosure after a child's death. METHODS: A postal questionnaire survey was sent members the Meningitis Research Foundation UK charity, whose child had suffered from bacterial meningitis or meningococcal septicaemia within previous 5 years. Main outcome measures were acceptability consent; timing requesting and RESULTS: 220 families questionnaires whom 63 (29%) bereaved. 68 responded (31%), 19 (28%) The majority (67%) willing for their be involved in without being explained them beforehand; 70% wanted informed as soon condition stabilised. In event death before could discussed bereaved parents (66% 12/18) anticipated wanting told at some time. This compared with 37% (18/49) non-bereaved (p = 0.06). Parents' free text responses indicated that word 'trial' held strongly negative connotations. few regarded gaps evidence base emergency treatments indicating staff lacked expertise care critically ill child. Bereaved importance individualised following DISCUSSION: Deferred is acceptable respondents. Parents children recovered differed parents. Most would want aftermath death, although minority opposed such disclosure. Distinction should drawn between when considering different processes.