Tine Brink Henriksen

Life after the loss: protocol for a Danish longitudinal follow-up study unfolding life and grief after the death of a child during pregnancy from gestational week 14, during birth or in the first 4 weeks of life

Publikation: Bidrag til tidsskrift/Konferencebidrag i tidsskrift /Bidrag til avisTidsskriftartikelForskningpeer review


  • Dorte Hvidtjørn, Syddansk Universitet
  • ,
  • Christina Prinds, Midwifery College, University College South Denmark, Esbjerg, Denmark., Syddansk Universitet
  • ,
  • Mette Bliddal, OPEN Odense Patient data Explorative Network, Odense University Hospital and University of Southern Denmark
  • ,
  • Tine Brink Henriksen
  • Joanne Cacciatore, School of Social Work, Arizona State University, Tempe, Arizona, USA.
  • ,
  • Maja O'Connor

INTRODUCTION: After the death of a child during pregnancy, birth or in the neonatal period, parents often experience feelings of guilt, disenfranchisement, feelings of betrayal by one's own body and envy of others. Such bereavement results in high rates of distress: psychologically, emotionally, physiologically and existentially. These data are collected using a national, longitudinal cohort to assess grief in mothers and their partners after the death of a child during pregnancy, birth or in the neonatal period. Our aim is to achieve a general description of grief, emotional health, and existential values after pregnancy or perinatal death in a Danish population.

METHODS AND ANALYSIS: The cohort comprises mothers and their partners in Denmark who lost a child during pregnancy from gestational week 14, during birth or in the neonatal period (4 weeks post partum). We began data collection in 2015 and plan to continue until 2024. The aim is to include 5000 participants by 2024, generating the largest cohort in the field to date. Parents are invited to participate at the time of hospital discharge or via the Patient Associations homepage. Data are collected using web-based questionnaires distributed at 1-2, 7 and 13 months after the loss. Sociodemographic and obstetric variables are collected. Validated psychometric measures covering attachment, continuing bonds, post-traumatic stress, prolonged grief, perinatal grief and existential values were chosen to reach our aim.

ETHICS AND DISSEMINATION: The study was approved by The Danish National Data Protection Agency (no. 18/15684, 7 October 2014). The results will be disseminated in peer-reviewed and professional journals as well as in layman magazines, lectures and radio broadcasts.

TidsskriftBMJ Open
Antal sider7
StatusUdgivet - 22 dec. 2018

Bibliografisk note

© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

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