“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
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.
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.
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.
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.
KeywordsBereavement research End-of-life Family experience Qualitative study
Vanessa Zinzoni (research nurse), Isabelle Treillet (psychologist), Cedric Colombo (psychologist).
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).
Compliance with ethical standards
Conflicts of interest
The authors declare that they have no conflict of interest.