Advertisement

“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

  • Alexandra Laurent
  • Jean Reignier
  • Amélie Le Gouge
  • 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
  • Elie Azoulay
  • René Robert
  • Nancy Kentish-BarnesEmail author
Original

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.

Keywords

Bereavement research End-of-life Family experience Qualitative study 

Notes

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).

Compliance with ethical standards

Conflicts of interest

The authors declare that they have no conflict of interest.

Supplementary material

134_2019_5722_MOESM1_ESM.docx (20 kb)
Supplementary material 1 (DOCX 20 kb)

References

  1. 1.
    Lautrette A, Darmon M, Megarbane B et al (2007) A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 356(5):469–478CrossRefGoogle Scholar
  2. 2.
    Kentish-Barnes N, Chaize M, Seegers V et al (2015) Complicated grief after death of a loved one in the intensive care unit. Eur Respir J 45:1341–1352CrossRefGoogle Scholar
  3. 3.
    Carson SS, Cox CE, Wallenstein S et al (2016) Effect of palliative care-led meetings for families of patients with chronic critical illness: a randomized clinical trial. JAMA 316(1):51–62CrossRefGoogle Scholar
  4. 4.
    Curtis JR, Treece PD, Nielsen EL et al (2016) Randomized trial of communication facilitators to reduce family distress and intensity of end-of-life care. Am J Respir Crit Care Med 193(2):154–162CrossRefGoogle Scholar
  5. 5.
    Kentish-Barnes N, Chevret S, Champigneulle B et al (2017) Effect of a condolence letter on grief symptoms among relatives of patients who died in the ICU: a randomized clinical trial. Intensive Care Med 43(4):473–484CrossRefGoogle Scholar
  6. 6.
    Butler AE, Hall H, Copnell B (2018) Bereaved parents’ experiences of research participation. BMC Palliat Care 17:122–130CrossRefGoogle Scholar
  7. 7.
    Dyregrov K (2004) Bereaved parents’ experience of research participation. Soc Sci Med 58:391–400CrossRefGoogle Scholar
  8. 8.
    Hynson J, Aroni R, Bauld C, Sawyer S (2006) Research with bereaved parents: a question of how and not why. Palliat Med 20(8):805–811CrossRefGoogle Scholar
  9. 9.
    Kentish-Barnes N, Chevret S, Cheisson G et al (2018) Grief symptoms in relatives who experienced organ donation requests in the ICU. Am J Respir Crit Care Med 198(6):751–758CrossRefGoogle Scholar
  10. 10.
    Kentish-Barnes N, McAdam JL, Kouki S et al (2015) Research participation for bereaved family members: experience and insights from a qualitative study. Crit Care Med 43(9):1839–1845CrossRefGoogle Scholar
  11. 11.
    Kubler-Ross E (1969) On death and dying. The Macmillan Company, New YorkGoogle Scholar
  12. 12.
    Robert R, Le Gouge A, Kentish-Barnes N et al (2017) Terminal weaning or immediate extubation for withdrawing mechanical ventilation in critically ill patients (the ARREVE observational study). Intensive Care Med 43(12):1793–1807CrossRefGoogle Scholar
  13. 13.
    McAdam JL, Arai S, Puntillo KA (2008) Unrecognized contributions of families in the intensive care unit. Intensive Care Med 34:1097–1101CrossRefGoogle Scholar
  14. 14.
    Bazeley P, Jackson K (2013) Qualitative data analysis with Nvivo, 2nd edn. SAGE Publications Ltd, LondonGoogle Scholar
  15. 15.
    Cook AS, Bosley G (1995) The experience of participating in bereavement research: stressful or therapeutic? Death Stud 19(2):157–170CrossRefGoogle Scholar
  16. 16.
    Stroebe M, Stroebe W, Schut H (2003) Bereavement research: methodological issues and ethical concerns. Palliat Med 17(3):235–240CrossRefGoogle Scholar
  17. 17.
    Rosenblatt PC (1995) Ethics of qualitative interviewing with grieving families. Death Stud 19(2):139–155CrossRefGoogle Scholar
  18. 18.
    Parkes CM (1995) Guidelines for conducting ethical bereavement research. Death Stud 19(2):171–181CrossRefGoogle Scholar
  19. 19.
    Luthar SS, Cicchetti D, Becker B (2000) The construct of resilience: a critical evaluation and guidelines for future work. Child Dev 71(3):543–562CrossRefGoogle Scholar
  20. 20.
    Fonagy P, Steele M, Steele H et al (1994) The theory and practice of resilience. J Child Psychol Psychiatry 35:231–257CrossRefGoogle Scholar
  21. 21.
    Barnato AE, Schenker Y, Tiver G et al (2017) Storytelling in the early bereavement period to reduce emotional distress among surrogates involved in a decision to limit life support in the ICU: a pilot feasibility trial. Crit Care Med 45(1):35–46CrossRefGoogle Scholar
  22. 22.
    Meert KL, Eggly S, Kavanaugh K et al (2015) Meaning making during parent-physician bereavement meetings after a child’s death. Health Psychol 34(4):453–461CrossRefGoogle Scholar
  23. 23.
    Nelson JE, Puntillo KA, Pronovost PJ et al (2010) In their own words: patients and families define high-quality palliative care in the intensive care unit. Crit Care Med 38(3):808–818CrossRefGoogle Scholar
  24. 24.
    Stroebe M, Boerner K (2015) Caregiving and bereavement research: bridges over the gap. Palliat Med 29(7):574–576CrossRefGoogle Scholar
  25. 25.
    Haines KJ, Sevin CM, Hibbert E et al (2019) Key mechanisms by which post-ICU activities can improve in-ICU care: results of the international THRIVE collaboratives. Intensive Care Med 45:939–947CrossRefGoogle Scholar
  26. 26.
    Cunningham TV, Scheunemann LP, Arnold RM, White D (2018) How do clinicians prepare family members for the role of surrogate decision-maker? J Med Ethics 44(1):21–26CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  • Alexandra Laurent
    • 1
  • Jean Reignier
    • 2
    • 3
  • Amélie Le Gouge
    • 4
    • 5
  • Alice Cottereau
    • 6
  • Mélanie Adda
    • 7
  • Djillali Annane
    • 8
    • 9
  • Juliette Audibert
    • 10
  • François Barbier
    • 11
  • Patrick Bardou
    • 12
  • Simon Bourcier
    • 13
    • 14
  • Jeremy Bourenne
    • 15
  • Alexandre Boyer
    • 16
    • 17
  • François Brenas
    • 18
  • Vincent Das
    • 6
  • Arnaud Desachy
    • 19
  • Jérôme Devaquet
    • 20
  • Marc Feissel
    • 21
  • Frédérique Ganster
    • 22
  • Maïté Garrouste-Orgeas
    • 23
    • 24
    • 25
  • Guillaume Grillet
    • 26
  • Olivier Guisset
    • 16
    • 27
  • Rebecca Hamidfar-Roy
    • 28
    • 29
  • Anne-Claire Hyacinthe
    • 30
  • Sebastien Jochmans
    • 31
  • Mercé Jourdain
    • 32
  • Alexandre Lautrette
    • 33
    • 34
  • Nicolas Lerolle
    • 35
    • 36
  • Olivier Lesieur
    • 37
  • Fabien Lion
    • 38
  • Philippe Mateu
    • 39
  • Bruno Megarbane
    • 40
    • 41
  • Sybille Merceron
    • 40
    • 59
  • Emmanuelle Mercier
    • 42
    • 43
    • 44
  • Jonathan Messika
    • 45
  • Paul Morin-Longuet
    • 46
  • Bénédicte Philippon-Jouve
    • 47
  • Jean-Pierre Quenot
    • 48
  • Anne Renault
    • 49
    • 50
  • Xavier Repesse
    • 51
  • Jean-Philippe Rigaud
    • 52
  • Ségolène Robin
    • 13
    • 53
    • 54
  • Antoine Roquilly
    • 2
    • 55
  • Amélie Seguin
    • 2
    • 3
  • Didier Thevenin
    • 56
  • Patrice Tirot
    • 57
  • Isabelle Vinatier
    • 58
  • Elie Azoulay
    • 40
    • 59
  • René Robert
    • 60
    • 61
    • 62
  • Nancy Kentish-Barnes
    • 59
    Email author
  1. 1.Laboratoire Psy-DREPI, EA7458Université de Bourgogne Franche-ComtéDijonFrance
  2. 2.Université de NantesNantesFrance
  3. 3.Service de Réanimation MédicaleCHU de NantesNantesFrance
  4. 4.Inserm CIC 1415ToursFrance
  5. 5.CHU ToursToursFrance
  6. 6.Service de Réanimation PolyvalenteCHI André GrégoireMontreuilFrance
  7. 7.Hôpital Nord, Réanimation des Détresses Respiratoires et Infections SévèresAix-Marseille Université, APHM, URMITE, UMR CNRS 7278MarseilleFrance
  8. 8.Inserm U 1173Université de Versailles-Saint Quentin en YvelinesVersaillesFrance
  9. 9.Service de Réanimation Médicale, Assistance Publique des Hôpitaux de ParisHôpital Raymond PoincaréGarchesFrance
  10. 10.Service de Réanimation PolyvalenteCH de ChartresChartresFrance
  11. 11.Service de Réanimation MédicaleCHR d’OrléansOrléansFrance
  12. 12.Service de Réanimation Médico-ChirurgicaleCH de MontaubanMontaubanFrance
  13. 13.Université Paris-DescartesParisFrance
  14. 14.Service de Réanimation Médicale, Assistance Publique des Hôpitaux de ParisCHU CochinParisFrance
  15. 15.Hôpital La Timone, Réanimation et Surveillance ContinueAix-Marseille Université, APHMMarseilleFrance
  16. 16.Université de BordeauxBordeauxFrance
  17. 17.Service de Réanimation MédicaleCHU BordeauxBordeauxFrance
  18. 18.Service de Réanimation PolyvalenteCH Emile RouxLe Puy En VelayFrance
  19. 19.Service de Réanimation PolyvalenteCH d’AngoulêmeAngoulêmeFrance
  20. 20.Service de Réanimation PolyvalenteHôpital FochSuresnesFrance
  21. 21.Service de Réanimation PolyvalenteCH de Belfort-MontbéliardBelfortFrance
  22. 22.Service de Réanimation MédicaleHôpital Emile MullerMulhouseFrance
  23. 23.Service de Médecine InterneHôpital Franco-BritanniqueLevallois-PerretFrance
  24. 24.Groupe de Recherche OutcomereaParisFrance
  25. 25.Département de Biostatistiques-HUPNVS-AP-HP, UFR de Médecine-BichatIAME, UMR 1137, INSERM Université Paris DiderotParisFrance
  26. 26.Service de Réanimation PolyvalenteCH Bretagne SudLorientFrance
  27. 27.Service de Réanimation MédicaleCHU Bordeaux, Hôpital Saint-AndréBordeauxFrance
  28. 28.Université Grenoble-AlpesGrenobleFrance
  29. 29.Clinique de la Réanimation MédicaleCHU Albert MichallonGrenobleFrance
  30. 30.Service de Réanimation PolyvalenteCentre Hospitalier Annecy GenevoisPringyFrance
  31. 31.Service de Réanimation MédicaleCH Marc JacquetMelunFrance
  32. 32.Service de RéanimationUniversité de Lille, INSERM, CHU Lille, U1190LilleFrance
  33. 33.Université de Clermont-FerrandClermont-FerrandFrance
  34. 34.Service de Réanimation MédicaleCHU Gabriel MontpiedClermont-FerrandFrance
  35. 35.Université d’AngersAngersFrance
  36. 36.Département de Réanimation Médicale et Médecine HyperbareCHU AngersAngersFrance
  37. 37.Service de Réanimation PolyvalenteCH de La RochelleLa RochelleFrance
  38. 38.Service de Réanimation Médico-ChirurgicaleInstitut Gustave RoussyParis VillejuifFrance
  39. 39.Service de Réanimation PolyvalenteCH de Charleville-MézièresCharleville-MézièresFrance
  40. 40.Université Paris DiderotParisFrance
  41. 41.Assistance-Publique-Hopitaux de Paris, Service de Réanimation Médicale et ToxicologiqueCHU LariboisièreParisFrance
  42. 42.Université de ToursToursFrance
  43. 43.Service de Réanimation Médicale, Hôpital BretonneauCHU de ToursToursFrance
  44. 44.Réseau CRICSToursFrance
  45. 45.Service de Réanimation Médico-chirurgicale, Hôpital Louis Mourier, AP-HPIAME, UMR 1137, INSERM, Université Paris Diderot, Sorbonne Paris CitéColombesFrance
  46. 46.Service de Réanimation PolyvalenteCH Saint NazaireSaint NazaireFrance
  47. 47.Service de Réanimation Médico-chirurgicaleCH de RoanneRoanneFrance
  48. 48.Service de Médecine Intensive-RéanimationCHU Dijon BourgogneDijonFrance
  49. 49.Equipe de Recherche EPS «Ethique, Professionnalisme et Santé», EA 686Université de Bretagne OccidentaleBrestFrance
  50. 50.Service de Réanimation MédicaleCHU de la Cavale BlancheBrestFrance
  51. 51.Assistance Publique-hôpitaux de Paris, Service de Réanimation Médico-ChirurgicaleCHU Ambroise ParéBoulogne-BillancourtFrance
  52. 52.Médecine Intensive et RéanimationCH de DieppeDieppeFrance
  53. 53.Hôpital Européen Georges PompidouParisFrance
  54. 54.Service d’Anesthésie-RéanimationParisFrance
  55. 55.Département d’Anesthésie et RéanimationCHU de NantesNantesFrance
  56. 56.Service de Réanimation PolyvalenteCH de LensLensFrance
  57. 57.Service de Réanimation Médico-chirurgicaleCH du MansLe MansFrance
  58. 58.Service de Réanimation PolyvalenteCHD de la VendéeLa Roche-Sur-YonFrance
  59. 59.Service de Réanimation Médicale, Groupe de Recherche Famiréa, Hôpital Saint-LouisCHU Saint-LouisParisFrance
  60. 60.Inserm CIC 1402, Axe AlivePoitiersFrance
  61. 61.Université de PoitiersPoitiersFrance
  62. 62.Service de Réanimation MédicaleCHU PoitiersPoitiersFrance

Personalised recommendations