Coffey Maitreya, Espin Sherry, Hahmann Tara, Clairman Hayyah, Lo Lisha, Friedman Jeremy N, Matlow Anne
Division of Paediatric Medicine, The Hospital for Sick Children, Toronto, Canada;
Departments of Paediatrics.
Hosp Pediatr. 2017 Jan;7(1):24-30. doi: 10.1542/hpeds.2016-0048.
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.
根据披露指南，因医疗差错而经历不良事件的患者应得到全面披露，而传统上并不期望披露险些发生的差错。这可能与家长的期望相冲突；调查显示，大多数家长期望无论差错是否造成伤害都能得到全面披露。关于是否让儿童参与这些讨论的协议尚未确立。本研究探讨了家长在披露方面的偏好以及对让儿童参与的看法。
15名住院儿童的家长参与了半结构化访谈。使用三种不同严重程度的假设情景来引发讨论。访谈进行了录音、转录，并对出现的主题进行编码。
如果发生了伤害，家长一致希望得到披露，尽管希望告知孩子的家长较少。对于无伤害的差错，大多数家长希望自己得到披露，但很少有人希望告知孩子。关于让儿童参与披露，家长更倾向于评估孩子应对披露的认知和情感准备情况，希望在医疗团队和孩子之间充当“缓冲”。一般来说，随着事件严重程度的降低，他们觉得告知孩子的风险超过了益处。家长强烈强调需要对良好的最终结果得到保证，并预计管理自己的情绪会有困难。
家长对披露的期望不一。尽管调查研究表明，与成年患者相比，家长对披露无伤害事件的愿望更强烈，但这项定性研究揭示了更大程度的犹豫和复杂性。家长非常需要得到保证，并一直希望在医疗团队和孩子之间充当缓冲。
