According to disclosure guidelines, patients experiencing adverse events due to medical errors should be offered full disclosure, whereas disclosure of near misses is not traditionally expected. This may conflict with parental expectations; surveys reveal most parents expect full disclosure whether errors resulted in harm or not. Protocols regarding whether to include children in these discussions have not been established. This study explores parent preferences around disclosure and views on including children.
Fifteen parents of hospitalized children participated in semistructured interviews. Three hypothetical scenarios of different severity were used to initiate discussion. Interviews were audiotaped, transcribed, and coded for emergent themes.
Parents uniformly wanted disclosure if harm occurred, although fewer wanted their child informed. For nonharmful errors, most parents wanted disclosure for themselves but few for their children.
With respect to including children in disclosure, parents preferred to assess their children’s cognitive and emotional readiness to cope with disclosure, wishing to act as a “buffer” between the health care team and their children. Generally, as event severity decreased, they felt that risks of informing children outweighed benefits. Parents strongly emphasized needing reassurance of a good final outcome and anticipated difficulty managing their emotions.
Parents have mixed expectations regarding disclosure. Although survey studies indicate a stronger desire for disclosure of nonharmful events than for adult patients, this qualitative study revealed a greater degree of hesitation and complexity. Parents have a great need for reassurance and consistently wish to act as a buffer between the health care team and their children.