What can we learn from patient and family experiences of open disclosure and how they have been evaluated? A systematic review.

Abstract

Background: Open disclosure, or 'error disclosure,' is a policy requiring healthcare professionals to promptly offer an honest apology after an adverse event. While the fundamental principles of open disclosure have evolved into an important right for patients who experience adverse events, the process also plays an integral role in ensuring continuous improvements in the delivery of patient care. Healthcare providers often encounter challenges in fully adopting open disclosure processes, limiting their use in practice. This systematic review aims to explore patient experiences following open disclosure, focusing on how these experiences are being measured and evaluated. By examining patient experiences, this review seeks to enhance our understanding of the effectiveness of open disclosure and inform improvements in healthcare communication practices.

Methods: A detailed search strategy was developed to identify relevant literature published between 2008 and 2023. The review focused on original research in English, emphasising qualitative or quantitative studies that evaluate and measure patient experiences of disclosure. Four major databases (PubMed, CINAHL, PsycINFO, and EMBASE) were searched for studies reporting details of patients/clients/service users and their families/relevant others who have experienced the OD process/duty of candour. The Mixed Methods Appraisal Tool (MMAT) was used to appraise included studies. The review adopted a narrative approach to synthesise the findings.

Results: From the initial 8,940 studies identified, 26 met the inclusion criteria, comprising 17 qualitative studies, two quantitative studies, three mixed-methods studies, and four case studies. The study explored patients' and service users' perspectives on their experiences with OD following patient safety incidents. The synthesis highlights five key themes across the included studies: timeliness of disclosure, quality of communication, addressing patient and family support needs, organisational arrangements for the OD process, and viewing OD as a forward-looking conversation.

Conclusions: While explicit open disclosure policies are common in healthcare, routine assessments of patient and family experiences remain infrequent. Patients and families, as service users, perceive safety incidents differently from healthcare providers and hold specific expectations. They emphasise the importance of transparent, ongoing communication, emotional support, and active involvement in post-incident evaluations, considering OD vital for building trust and achieving resolution after adverse events.