Patient and family member perspectives of encountering adverse events in health care: a systematic review

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Abstract

Background

Research focusing on the adverse events in health care, including detailed descriptions and analyses of such events, has been on the rise. There are few studies that address the patient and family member perspectives post adverse events. The insight of harmed patients can contribute to improving education and safety practices within health care and identify how best to optimize patient-provider communication in the aftermath of such an experience.

Objective

The objective of this systematic review was to analyze and synthesize best available evidence on the perspectives of patients and family members who encountered adverse events while receiving health care.

Inclusion criteria

Types of studies

Inclusion criteria

This review included studies that used qualitative methodologies such as, but not limited, to phenomenology, grounded theory, ethnography, case study, and/or action research.

Inclusion criteria

Types of participants

Inclusion criteria

This review considered patients with diverse diagnoses and conditions who experienced an adverse event while receiving health care in any phase of care from diagnosis to treatment. Family members were included and their perspectives on the occurrence of adverse events were also considered. There was no age limitation for the inclusion of participants in this review and all health care settings were considered. Participants received care from a variety of health care providers (HCPs).

Inclusion criteria

Phenomena of interest

Inclusion criteria

The phenomenon of interest was the patient's or family's experience of the occurrence of an adverse health care event - including thoughts, perceptions and reactions to such an event - provided by self-report.

Search Strategy

The search strategy aimed to be comprehensive by locating both published and unpublished studies from 1970-2013. A three-step strategy was utilized; an initial limited search of MEDLINE and CINAHL was undertaken followed by an analysis of text words contained in the title and abstract, and of index terms used to describe the article. A second search using identified keywords and index/thesaurus terms was undertaken across all included databases.

Methodological quality

Two reviewers independently assessed the methodological quality of each study. Research papers selected for retrieval were assessed for methodological validity prior to inclusion using the Joanna Briggs Institute Qualitative Appraisal and Review Instrument (JBI-QARI) and the Critical Appraisal Checklist for Interpretive and Critical Research. Any disagreements that arose between reviewers were resolved through discussion with a third party reviewer.

Data collection

Qualitative data was independently extracted from the papers by two reviewers using the JBI-QARI Data Extraction Form for Interpretive and Critical Research. Any disagreements between reviewers were resolved through discussion with a third party reviewer.

Data synthesis

Data synthesis aimed to portray an accurate interpretation and synthesis of findings from the selected population's experiences of having experienced an adverse event while receiving health care.

Results

A total of 18 studies were identified of which 14 were included in the final review. These qualitative studies examined the perspectives of patients and family members who experienced an adverse event while receiving health care. Findings were analyzed using JBI-QARI. The process of meta-synthesis using the JBI software involved categorizing findings and developing themes. Nine themes were identified related to the patient and family perceptions and experiences of an adverse event: communication, the disclosure process, apology, consequences and impact, fear of reprisal and/or interference with care, learned helplessness, measures of safeguarding, self-discovery and awareness of errors and violations of trust.

Conclusion

The patient and family member perspective of experiencing an adverse event is complex and varies in degree of impact and time for resolution. Patients and family members provided graphic descriptions of the encounters and appreciated validation and apologies from health providers. Actions to mitigate similar events were often sought, along with the receipt of a sincere apology. A fear of reprisal for reporting an adverse event was a concern of patients and family members when HCPs responded negatively to an incident. A sense of distrust towards the HCP contributes to hyper-vigilance and safeguarding by both patients and families.

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