Abstract
Purpose
Bereavement research has helped to improve end-of-life practices in the ICU. However, few studies have explored bereaved relatives experience of research participation in this context. We aimed to explore the experience of bereaved relatives’ participation in the ARREVE study which included three telephone follow-up calls to complete several quantitative tools.
Methods
Volunteer relatives who participated in the 12-month follow-up call completed a questionnaire about research participation that included ten open-ended questions so that respondents could use their own words and thoughts. These open-ended questions were analyzed using qualitative analysis that examines themes within the data.
Results
175/311 relatives completed the questionnaire. Three themes were derived from the thematic analysis: (1) struggling: reactivation of emotional distress associated with the ICU experience and the loss is frequent, specifically during the 1st follow-up call. (2) Resilience: as time goes by, research participation becomes increasingly positive. The calls are a help both in giving meaning to the relatives’ experience and in accepting the loss. (3) Recognition: research calls can compensate for the absence of support during bereavement.
Conclusion
Although some emotional difficulties must be acknowledged, bereavement research is overall associated with benefits, by facilitating emotional adjustments, meaning-making and resilience. Lack of support and social isolation during bereavement are frequent experiences, revealing that support strategies for bereaved relatives should be developed after the loss of a loved one in the ICU.
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Acknowledgements
Vanessa Zinzoni (research nurse), Isabelle Treillet (psychologist), Cedric Colombo (psychologist).
Funding
The ARREVE study was supported by grants from three non-profit organizations: the Fondation de France (#000332577), La Roche-sur-Yon Departmental Hospital, and Programme Hospitalier de Recherche Clinique National 2012 of the French Ministry of Health (#13-0142).
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Alexandra Laurent, Jean Reignier, Amélie Le Gouge, Elie Azoulay, René Robert and Nancy Kentish-Barnes designed the study, analyzed the data and wrote the original manuscript. Alice Cottereau, Mélanie Adda, Djillali Annane, Juliette Audibert,François Barbier, Patrick Bardou, Simon Bourcier, Jeremy Bourenne, Alexandre Boyer, François Brenas, Vincent Das, Arnaud Desachy, Jérôme Devaquet, Marc Feissel, Frédérique Ganster, Maïté Garrouste-Orgeas, Guillaume Grillet, Olivier Guisset, Rebecca Hamidfar-Roy, Anne-Claire Hyacinthe, Sebastien Jochmans, Mercé Jourdain, Alexandre Lautrette, Nicolas Lerolle, Olivier Lesieur, Fabien Lion, Philippe Mateu, Bruno Megarbane, Sybille Merceron, Emmanuelle Mercier, Jonathan Messika, Paul Morin-Longuet, Bénédicte Philippon-Jouve, Jean-Pierre Quenot, Anne Renault, Xavier Repesse, Jean-Philippe Rigaud, Ségolène Robin, Antoine Roquilly, Amélie Seguin, Didier Thevenin, Patrice Tirot, Isabelle Vinatier participated in meetings held to improve the original design and organization of the ARREVE studies, participated in acquiring the data and writing the manuscript. All authors approved the final version of the manuscript and have agreed to be accountable for the work it reports.
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Laurent, A., Reignier, J., Le Gouge, A. et al. “You helped me keep my head above water”—experience of bereavement research after loss of a loved one in the ICU: insights from the ARREVE study. Intensive Care Med 45, 1252–1261 (2019). https://doi.org/10.1007/s00134-019-05722-x
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DOI: https://doi.org/10.1007/s00134-019-05722-x