Factors associated with nonparticipation and loss to follow-up in bereavement research using data from a cohort of parents with a loss in pregnancy or the neonatal period

Sofie Mørk; Sören Möller; Maja O'Connor; Tine Brink Henriksen; Dorte Hvidtjørn

doi:10.1080/07481187.2025.2469138

Factors associated with nonparticipation and loss to follow-up in bereavement research using data from a cohort of parents with a loss in pregnancy or the neonatal period

Sofie Mørk^*, Sören Möller, Maja O'Connor, Tine Brink Henriksen, Dorte Hvidtjørn

^*Corresponding author for this work

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

Abstract

Factors shaping participation in longitudinal cohorts may introduce bias, but there is a lack of research concerning participation patterns in cohorts of bereaved. Our aim was to study this in a longitudinal cohort of parents with a loss in pregnancy or during the neonatal period. Using data from the Danish national registers we identified all parents who experienced a pregnancy or neonatal loss in 2016-2018 and linked that with data on participants from the Life After the Loss cohort. Analyzing 725 parents, baseline participation was 25.7%, with 72.6% and 59.7% continuing at the seven- and 13-month follow-up. Partners and parents with lower education were underrepresented at baseline and at follow-up. Although not statistically significant, substantial underrepresentation of parents with mental health conditions and of parents who lived alone was observed at baseline. Although initial participation was low, after enrollment, most parents engaged in follow-up, minimizing the risk of attrition bias.

Original language	English
Journal	Death Studies
Pages (from-to)	1-11
Number of pages	11
ISSN	0748-1187
DOIs	https://doi.org/10.1080/07481187.2025.2469138
Publication status	E-pub / Early view - 26 Feb 2025

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@article{9ff407a02df847a891e5a1b63e592aa7,

title = "Factors associated with nonparticipation and loss to follow-up in bereavement research using data from a cohort of parents with a loss in pregnancy or the neonatal period",

abstract = "Factors shaping participation in longitudinal cohorts may introduce bias, but there is a lack of research concerning participation patterns in cohorts of bereaved. Our aim was to study this in a longitudinal cohort of parents with a loss in pregnancy or during the neonatal period. Using data from the Danish national registers we identified all parents who experienced a pregnancy or neonatal loss in 2016-2018 and linked that with data on participants from the Life After the Loss cohort. Analyzing 725 parents, baseline participation was 25.7%, with 72.6% and 59.7% continuing at the seven- and 13-month follow-up. Partners and parents with lower education were underrepresented at baseline and at follow-up. Although not statistically significant, substantial underrepresentation of parents with mental health conditions and of parents who lived alone was observed at baseline. Although initial participation was low, after enrollment, most parents engaged in follow-up, minimizing the risk of attrition bias.",

author = "Sofie M{\o}rk and S{\"o}ren M{\"o}ller and Maja O'Connor and Henriksen, {Tine Brink} and Dorte Hvidtj{\o}rn",

year = "2025",

month = feb,

day = "26",

doi = "10.1080/07481187.2025.2469138",

language = "English",

pages = "1--11",

journal = "Death Studies",

issn = "0748-1187",

publisher = "Taylor and Francis Ltd.",

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Factors associated with nonparticipation and loss to follow-up in bereavement research using data from a cohort of parents with a loss in pregnancy or the neonatal period. / Mørk, Sofie; Möller, Sören; O'Connor, Maja et al.
In: Death Studies, 26.02.2025, p. 1-11.

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

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T1 - Factors associated with nonparticipation and loss to follow-up in bereavement research using data from a cohort of parents with a loss in pregnancy or the neonatal period

AU - Mørk, Sofie

AU - Möller, Sören

AU - O'Connor, Maja

AU - Henriksen, Tine Brink

AU - Hvidtjørn, Dorte

PY - 2025/2/26

Y1 - 2025/2/26

N2 - Factors shaping participation in longitudinal cohorts may introduce bias, but there is a lack of research concerning participation patterns in cohorts of bereaved. Our aim was to study this in a longitudinal cohort of parents with a loss in pregnancy or during the neonatal period. Using data from the Danish national registers we identified all parents who experienced a pregnancy or neonatal loss in 2016-2018 and linked that with data on participants from the Life After the Loss cohort. Analyzing 725 parents, baseline participation was 25.7%, with 72.6% and 59.7% continuing at the seven- and 13-month follow-up. Partners and parents with lower education were underrepresented at baseline and at follow-up. Although not statistically significant, substantial underrepresentation of parents with mental health conditions and of parents who lived alone was observed at baseline. Although initial participation was low, after enrollment, most parents engaged in follow-up, minimizing the risk of attrition bias.

AB - Factors shaping participation in longitudinal cohorts may introduce bias, but there is a lack of research concerning participation patterns in cohorts of bereaved. Our aim was to study this in a longitudinal cohort of parents with a loss in pregnancy or during the neonatal period. Using data from the Danish national registers we identified all parents who experienced a pregnancy or neonatal loss in 2016-2018 and linked that with data on participants from the Life After the Loss cohort. Analyzing 725 parents, baseline participation was 25.7%, with 72.6% and 59.7% continuing at the seven- and 13-month follow-up. Partners and parents with lower education were underrepresented at baseline and at follow-up. Although not statistically significant, substantial underrepresentation of parents with mental health conditions and of parents who lived alone was observed at baseline. Although initial participation was low, after enrollment, most parents engaged in follow-up, minimizing the risk of attrition bias.

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DO - 10.1080/07481187.2025.2469138

M3 - Journal article

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EP - 11

JO - Death Studies

JF - Death Studies

ER -

Factors associated with nonparticipation and loss to follow-up in bereavement research using data from a cohort of parents with a loss in pregnancy or the neonatal period

Abstract

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