Paediatric nurses' personal accounts of being told not to disclose information to children with serious illness — An interpretative phenomenological study

Aims
To explore the experiences, and perceptions of nurses who are told to withhold clinical information from children diagnosed with serious illnesses.

Design
An interpretative qualitative phenomenological design was used for the study. Sampling was purposive and data were collected using semi-structured interviews from nurses working in a paediatric setting within the preceding 5 years. Nurse-participants described their personal experiences of withholding situations (‘non-disclosure directives’). Their accounts of specific examples of situations (‘personal accounts’) were extracted from the interview transcripts and analysed using inductive content analysis to identify patterns and concepts within the descriptions. Data management was supported using Dedoose.

Setting
Nurse-participants were interviewed face-to face and online between November 2019 and December 2020.

Participants
Twenty-six Australian nurses who have cared for seriously ill children within the preceding 5 years participated in the study.

Results
Thirty-nine accounts of non-disclosure situations (personal accounts) were extracted from interview transcripts. Four types of non-disclosure were identified in the personal accounts: withholding information, temporary withholding, lying and combined withholding/lying. The inductive content analysis identified three key aspects of nurse-participants' accounts: beliefs and perceptions (about the child and parents), the nature of the experience and feelings about the experience.

Discussion
Moral distress occurred when nurses' actions conflicted with their moral values in response to a non-disclosure directive, particularly when asked to directly lie to children. Nurses felt disempowered by the parent's authority and the institutional hierarchy that limited their ability to participate in discussions where a non-disclosure directive was given.

Conclusion and Impact
Nurse-participants were afforded a platform for reflection which proved valuable in allowing them to process their experiences in a non-disclosure situation.

Recommendations
Nurses directed to withhold medical information from children should be afforded opportunities for reflection to mitigate moral distress. Nurses should be included in the planning of ethically appropriate responses to withholding directives.