The struggle against perceived negligence. A qualitative study of patients’ experiences of adverse events in Norwegian hospitals

Abstract

BackgroundEvery year, 14 % of patients in Norwegian hospitals experience adverse events, which often have health-damaging consequences. The government, hospital management and health personnel attempt to minimize such events. Limited research on the first-hand experience of the patients affected is available. The aim of this study is to present patients’ perspectives of the occurrence of, disclosure of, and healthcare organizations’ responses to adverse events. Findings are discussed within a social constructivist framework and with reference to principles of open disclosure policy.MethodsThis qualitative study with an explorative descriptive design included fifteen in-depth interviews with former patients recruited by the Health and Social Services ombudsmen in the two northernmost counties of Norway. Inclusion criteria were as follows: 1) experience of adverse events in connection with surgical, orthopedic or medical treatment in general hospitals; 2) men and women; 3) aged 20–70; and 4) a minimum of one year since the event occurred. Transcribed audio-recorded interviews were analyzed through qualitative content analysis.ResultsThe analysis revealed three main topics regarding patients’ experiences of adverse events: 1) ignored concerns or signs of complications; 2) lack of responsibility and error correction; and 3) lack of support, loyalty and learning opportunities. Patients had to struggle to demonstrate the error that had occurred and to receive the necessary treatment and monitoring in the aftermath of the events.ConclusionsPatient narratives reveal a lack of openness, care and responsibility in connection with adverse events. Conflicting power structures, attitudes and established procedures may inhibit prevention, learning and patient safety work in spite of major efforts and good intentions. Attitudes in day-to-day patient care and organizational procedures should be challenged to invite patients into open disclosure processes and include them in health and safety work to a greater extent. The study’s small sample of self-selected participants limits the generalizability of the findings, and future studies should include a larger number of patients as well as professional perspectives.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3101-2) contains supplementary material, which is available to authorized users.

Action after Adverse Events in Healthcare: An Integrative Literature Review

“…Patients and families [ 19 ] and healthcare providers [ 35 , 36 ] alike were often afraid of speaking up. Empathic, ethical and open communication played an important role overall; the quality of the communication seemed to either empower or disempower patients and their families [ 19 , 37 , 38 , 39 ]. In many cases, patients are not informed about AEs [ 40 ].…”

“…In many cases, patients are not informed about AEs [ 40 ]. Support for first victims was addressed primarily as a lack or neglect of emotional support [ 36 , 39 ] and compensation support [ 35 ]. Apologising was an important element after experiencing an AE [ 19 , 34 , 37 , 38 ].…”

“…It is important not to forget the first victims outside this support. It is also good to recognise that first victims have much information about AEs to provide for organisational learning [ 38 , 39 ]. Crucial for this is that action after AE education is included in professional and continuing healthcare programme [ 33 ].…”

Segurança do paciente no cuidado hospitalar: uma revisão sobre a perspectiva do paciente

“…As for study design, it was observed that most of the articles (37.9%) used mixed methods 15,16,17,18,19,20,21,22,23,24,25 and the same proportion (31%) adopted qualitative 26,27,28,29,30,31,32,33,34 and quantitative approaches 19,35,36,37,38,39,40,41 . There was variation in sample size and type according to quantitative and/or qualitative design.…”

Written reports of adverse events in acute care—A discourse analysis

“…This discursive ordering, which generated a closed approach to the ‘truth’, put the patient in an inferior position and left them to deal with suffering on their own. Hagensen, Nilsen, Mehus, and Henriksen () similarly presented how health care professionals' advantage of having expert knowledge became problematic when the patients' definitions of the events were ignored, which reinforced the disproportionate distribution of discursive power. This dilemma, where patients are encouraged to ask questions about their care, while at the same time their subordinate position is the most important barrier to them having more influence over their own safety (Doherty & Stavropoulou, ), contributes to the construction of unsafe care.…”