Understanding what shapes patient and family experience of the open disclosure process in the Irish healthcare context: a qualitative study

When something goes wrong in healthcare and results in harm or potential harm to the patient, there is an ethical and moral duty for healthcare professionals to disclose the incident to the patient, their family or their relevant others. This study sought to explore experiences of open disclosure and identify aspects of the process that shaped patient/family experience. This research was a retrospective qualitative descriptive study, interviewing those with recent experience of open disclosure. In total, 6 patients/family members, 5 healthcare professionals and 5 patient advocates from Ireland took part in semi-structured interviews. The results are organised into five themes: (i) The necessity of acknowledgement and apology, (ii) Importance of clear, compassionate and respectful communication, (iii) Openness and sharing as a two-way process, (iv) Healthcare staff as patients in open disclosure, and (v) The lasting impact of poor experiences of open disclosure. Participants emphasised the importance of apology, clear and compassionate communication and the value of creating space during meetings to listen to the experiences of those who have been impacted. It was reported there is a reluctance to use the term ‘open disclosure’ when discussing issues with patients, families and advocates. This may be due to a fear of litigation, fear that being associated with open disclosure means healthcare staff have made a mistake, and/or the existence of a blame culture within organisations. This research also highlighted the experiences of healthcare staff who themselves experience harm. Their experience when colleagues failed to be transparent was described as akin to a double trauma by participants. Participants emphasised key aspects of the process that shaped experience, including quality of communication, openness and the importance of apology and space for sharing experiences. It is evident that compounded harm is happening through poor understanding and implementation of open disclosure, and this is avoidable. Regular feedback from patients and families is important to improve processes and staff training and to ensure the process is meeting the needs of all those involved. Patients, patient advocates and experts by experience (those with direct experience of open disclosure) were represented on the steering committee, which guided every phase of this research. They supported the research by providing feedback on study design and recruitment planning, supported sensitive recruitment, helped design the interview guide and reviewed and provided feedback on patient information materials and content forms.