Caring for the invisible and forgotten: a qualitative document analysis and experience-based co-design project to improve the care of families experiencing out-of-hospital cardiac arrest

OBJECTIVES: The objectives of this project were to collect and analyze clinical governance documents related to family-centred care and cardiac arrest care in Canadian EMS organizations; and to improve the family-centredness of out-of-hospital cardiac arrest care through experience-based co-design. METHODS: We conducted qualitative document analysis of Canadian EMS clinical governance documents related to family-centred and cardiac arrest care, combining elements of content and thematic analysis methods. We then used experience-based co-design to develop a family-centred out-of-hospital cardiac arrest care policy and procedure template. RESULTS: Thirty-five Canadian EMS organizations responded to our requests, representing service area coverage for 80% of the Canadian population. Twenty documents were obtained for review and six overarching themes were identified: addressing family in event of in-home death, importance of family, family member escort, provider discretion and family presence discouraged. Informed by our qualitative analysis we then co-designed a policy and procedure template was created that prioritizes patient care while promotes family-centredness. CONCLUSIONS: There were few directives to support family-centred care by Canadian EMS organizations. A family-centred out-of-hospital cardiac arrest care policy and procedure template was developed using experience-based co-design to assist EMS organizations improve the family-centredness of out-of-hospital cardiac arrest care. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s43678-023-00464-8.