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Looking beyond the mean in grief trajectories: A prospective, population-based cohort study
Open accessAbstract
BACKGROUND: Most individuals adjust to the loss of a close person, but some experience adverse grief that challenges everyday life. No previous study has examined the development of grief symptoms in trajectories over time. We aimed to investigate trajectories of grief symptoms in bereaved partners and non-partners of severely ill patients starting before death until three years after death of the patient. METHOD: We conducted a prospective population-based cohort study including 1138 partners and 597 non-partners of terminally ill patients. Participants completed the Prolonged Grief-13 scale pre-loss, six months post-loss, and three years post-loss. On this basis, we developed semi-parametric group-based trajectory models. Multinomial logistic regression models estimated, odds ratios (ORs) with 95% confidence intervals (CIs) between selected characteristics: age, gender, educational level, the patient's survival time, and types of grief trajectories. RESULTS: We identified five specific grief trajectories for partners and four for non-partners. Low grief was identified in 34% of partners and 45% of non-partners, moderate/decreasing grief in 30% of partners and 31% of non-partners, high/decreasing grief in 20% of partners and 16% of non-partners, and high grief in 7% of partners and 8% of non-partners. In addition, a late grief trajectory was identified in 10% of partners. Low education compared to high education was associated with adverse grief trajectories (OR = 0.19 (95% CI = 0.80, 0.43) for partners following a high grief trajectory). CONCLUSIONS: This study is the first to systematically describe specific trajectories of grief based on grief symptoms. The majority had a low or decreasing grief trajectory, whereas minor groups of partners and non-partners had a high grief trajectory, and a group of partners had a late grief trajectory. A consistent vulnerability factor was low education. Bereaved individuals may benefit from information on possible patterns of grief development, including adverse grief trajectories.
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“Further studies, particularly those with larger sample sizes or longer-term time frames, have observed distinct trajectories in which most people are resilient to the effects of bereavement, a smaller but significant proportion have grief symptoms improving over time, others have moderate and persistent symptoms, and a smaller group exhibits high levels of grief symptoms that do not improve over”
From Emerging experience with selected new categories in the ICD‐11: complex PTSD, prolonged grief disorder, gaming disorder, and compulsive sexual behaviour disorder (2022) · cites this paper as [92]
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Closing the gap in a generation: health equity through action on the social determinants of health
Marmot, M. G., Friel, S., Bell, R., Houweling, T. A. J., & Taylor, S. A. J. (2008) · The Lancet · doi:10.1016/s0140-6736(08)61690-6 · Cited by 8,473
The Danish Civil Registration System
Pedersen, C. (2011) · Scandinavian Journal of Public Health · doi:10.1177/1403494810387965 · Cited by 4,713 · cited 1×
“The date of the patient's death was obtained from the Danish Civil Registration System (Pedersen, 2011), and the patient's survival time was measured as the time (days) from the registration of drug reimbursement to death.”
MethodMuthén, B., & Muthén, L. K. (2000) · Alcoholism Clinical and Experimental Research · doi:10.1111/j.1530-0277.2000.tb02070.x · Cited by 3,161 · cited 1×
“Grief trajectories based on PG sum scores at T0, T1, and T2 were estimated using a semi-parametric group-based trajectory model (GBTM) for repeated measurements (Muthen and Muthen, 2000; Nagin, 2014).”
MethodGroup-Based Trajectory Modeling in Clinical Research
Nagin, D. S., & Odgers, C. L. (2010) · Annual Review of Clinical Psychology · doi:10.1146/annurev.clinpsy.121208.131413 · Cited by 2,749
Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11
Prigerson, H. G., Horowitz, M. J., Jacobs, S. C., Parkes, C. M., Aslan, M., Goodkin, K., Raphael, B., Marwit, S. J., Wortman, C., Neimeyer, R. A., et al. (2009) · PLoS Medicine · doi:10.1371/journal.pmed.1000121 · Cited by 1,863
Health outcomes of bereavement.
Stroebe, M., Schut, H., & Stroebe, W. (2007) · The Lancet · doi:10.1016/s0140-6736(07)61816-9 · Cited by 1,746 · cited 2×
“Yet, several factors may interact in a complex interplay and affect grief reactions in relatives (Stroebe et al., 2007; Stroebe et al., 2006).”
BackgroundGrunfeld, E. (2004) · Canadian Medical Association Journal · doi:10.1503/cmaj.1031205 · Cited by 963
Resilience to loss and chronic grief: A prospective study from preloss to 18-months postloss
Bonanno, G. A., Wortman, C. B., Lehman, D. R., Tweed, R. G., Haring, M., Sonnega, J., Carr, D., & Nesse, R. M. (2002) · Journal of Personality and Social Psychology · doi:10.1037/0022-3514.83.5.1150 · Cited by 836
Group-Based Trajectory Modeling: An Overview
Nagin, D. S. (2014) · Annals of Nutrition and Metabolism · doi:10.1159/000360229 · Cited by 700 · cited 3×
“PG sum scores were modelled using the censored normal distribution (Nagin, 2014, Nagin and Odgers, 2010).”
BackgroundMethodSocioeconomic position and major mental disorders
Muntaner, C. (2004) · Epidemiologic Reviews · doi:10.1093/epirev/mxh001 · Cited by 631
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- Guldin, M.B., Nielsen, M.K., Carlsen, A.H., Jensen, A.B., Prigerson, H.G., Vedsted, P., (n.d.).Translation, adaptation and validation of a Danish version of the Prolonged Grief Disorder Scale (PG-13). Manuscript under review.
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Items 101–138 of 138
Yoshiike, T., Yajima, T., Utsumi, T., Tripathi, S., Kawamura, A., Nagao, K., Matsui, K., Matsuda, Y., Abe, M., Ito, M., et al. (2025) · Dialogues in Clinical Neuroscience · doi:10.1080/19585969.2025.2597058 · Cited by 1
“…amount of time had passed since their loss, with or without intervention. this aligns with recent findings from population-based studies showing that 75–93% of bereaved individuals experienced a decrease in grief symptoms over two to three years (Nielsen et al. 2019; Djelantik et al. 2022).”
Al‐Mamun, F., Das, P., ALmerab, M. M., Muhit, M., & Mamun, M. A. (2025) · Journal of Affective Disorders · doi:10.1016/j.jad.2025.121018 · Cited by 1
Derakhshan, E., Scarth, B., Morgan, A., Currier, D., & Andriessen, K. (2026) · Journal of Loss and Trauma · doi:10.1080/15325024.2026.2658567 · Cited by 1
Li, S., Qiu, L., Li, Y., Liu, X., Luo, Z., Liu, J., & Ma, X. F. (2026) · Psychological Medicine · doi:10.1017/s0033291726104541 · Cited by 1
“…recently officially recognized as prolonged grief disorder (PGD) in the ICD-11 and DSM-5-TR, replacing non-standardized terms such as ‘ complicated grief ’ or ‘ traumatic grief ’ (Lundorff et al., 2020; Lundorff, Holmg-ren, Zachariae, Farver-Vestergaard, & O ’ Connor, 2017; Nielsen et al., 2019).”
Boelen, P. A., Baş, S., Bolaséll, L. T., Bryant, R. A., Soysal, G. C., Eisma, M. C., Goodfellow, B., de Keijser, J., Kersting, A., Keser, E., et al. (2026) · European Journal of Psychotraumatology · doi:10.1080/20008066.2026.2652128 · Cited by 1
“Longitudinal research has shown that, apart from normal pain and grief, most people do not experience long-term emotional problems following loss (e.g. Galatzer-Levy et al., 2018; Nielsen et al., 2019).”
InfluentialTrajectories of grief following bereavement: a systematic review
Eisma, M. C., van Rhee, L., Gast, J. A., & Lenferink, L. I. M. (2026) · Anxiety Stress & Coping · doi:10.1080/10615806.2026.2705416 · Cited by 1
Factors of prolonged-grief-disorder symptom trajectories for ICU bereaved family surrogates
Wen, F., Prigerson, H. G., Chuang, L., Hu, T., Huang, C.-C., Chou, W., & Tang, S. T. (2024) · Critical Care · doi:10.1186/s13054-024-05160-2 · Cited by 1
“Younger individuals may initially experience higher levels of grief symptoms due to inexperience with death of a loved one and struggle with multiple responsibilities in family and work, but they may have greater resources to gradually cope with and recover from the loss [13, 39].”
BackgroundInfluentialNielsen, M. K., Vinther, M. C., Guldin, M., Christensen, K. S., & Mygind, A. (2025) · BMC Family Practice · doi:10.1186/s12875-025-02833-x · Cited by 2
“Most caregivers manage the psychological reaction to serious illness and death with the help from their social network, but a small group has persistently high levels of grief symptoms [6].”
Self-citationAreia, N. P., Major, S. D. O., Fonseca, G., Oliveira, V. D., & Relvas, A. P. (2020) · Psicologia Saúde & Doenças · doi:10.15309/20psd210125 · Cited by 1
Xiao, C., Zhu, B., & Wei, J. (2024) · Journal of Psychiatric Research · doi:10.1016/j.jpsychires.2024.03.029 · Cited by 1
12. The Intersection of End-of-Life and Grief
Nolan, R. D., Agley, J. D., Doarn, C. R., & Funk, A. (2021) · American Public Health Association eBooks · doi:10.2105/9780875533162ch12
Lenferink, L. I. M., van Eersel, J. H. W., & Franzen, M. (2022) · SSRN Electronic Journal · doi:10.2139/ssrn.4189266
Smoski, M. J., Schuette, S., & Thompson, L. W. (2022) · American Psychiatric Association Publishing eBooks · doi:10.1176/appi.books.9781615375196.ds15
Treml, J., & Kersting, A. (2023) · Die Psychotherapie · doi:10.1007/s00278-023-00675-5
“…Monaten nach dem Verlust mit weiterhin erhöhten Trauersymptomen zu späteren Zeitpunkten einhergehen (Boelen und Lenferink 2020, 2021), und dass Menschen mit chronischen Verläufen wiederum meist vor dem ersten Jahrestag des Todes Anzeichen von stark erhöhter Trauer zeigen (Nielsen et al. 2019).”
Reitsma, L., Mooren, T. T. M., Mouthaan, J., Pociūnaitė-Ott, J., van Hoof, M., Groen, S., Lotzin, A., Boelen, P. A., & Lenferink, L. I. M. (2024) · doi:10.31234/osf.io/hkjfq
The Existential Dimension of Loss and Grief
Leget, C. J. W., & Guldin, M. (2024) · Springer eBooks · doi:10.1007/978-3-031-50864-6_25 · Cited by 1
Self-citationRational Emotive Behavior Therapy (REBT) to reduce symptoms complicated grief
Fathurrahman, A. A., & Zulfiana, U. (2024) · Procedia Studi Kasus dan Intervensi Psikologi · doi:10.22219/procedia.v12i4.29915
“Approximately 7% of people in grief experience complicated grief (CG) (Nielsen et al., 2019).”
How spousal bereavement shapes life satisfaction: Stability and change across historical time
Ghose, U., Krämer, M. D., Richter, D., Wagner, G. G., Infurna, F. J., Ram, N., & Gerstorf, D. (2025) · European Journal of Personality · doi:10.1177/08902070251336534 · Cited by 1
“Stress models (Stroebe et al., 2007) and empirical research indicate that vulnerability to spousal bereavement is shaped by age (Bonanno & Kaltman, 1999), education (Nielsen et al., 2019), health (Lucas, 2007a, 2007b), caregiving (Schulz et al., 2003), and social resources (Infurna & Luthar, 2017).”
Motivational and Self-Regulatory Factors Associated With Yearning and Prolonged Grief Symptoms
Williams, J. L., Henschel, A. V., & Hardt, M. M. (2025) · The Journal of Nervous and Mental Disease · doi:10.1097/nmd.0000000000001833
Bristowe, K., May, P., Pitman, A., Jiang, J., Timmins, L., King, M., Braybrook, D. E., Marshall, S., Day, E., Clift, P., et al. (2025) · Palliative Medicine · doi:10.1177/02692163251355796
Companion animal bereavement: A psychometric evaluation of the German Pet Bereavement Questionnaire
Doering, B. K., Hunt, M. G., & Barke, A. (2025) · Death Studies · doi:10.1080/07481187.2025.2556116
Redican, E., Langford, A., Hyland, P., Karatzias, T., & Shevlin, M. E. (2025) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/s00127-025-03020-0
Lindstrøm, S., Frøsig, M. B., Sørensen, R. W., & Schønnemann, K. R. (2024) · Sygeplejevidenskab dk – Journal of Nursing Research & Professional Knowledge · doi:10.62680/fa1825
A preliminary validation of the traumatic grief inventory-kids-caregiver-report (TGI-K-CR)
Lenferink, L. I. M., & Nieuwenhuijse, A. (2026) · European Journal of Psychotraumatology · doi:10.1080/20008066.2026.2638015
“…which are characterized by stable, healthy functioning after a loss or by a brief period of distress in the first weeks following bereavement (Nielsen et al., 2019; Nij-borg, Westerhof, et al., 2025; Pociunaite et al., 2023), people with PGD experience prolonged and intense…”
Validation of an assessment of prolonged grief disorder among Mexican mourners
Sánchez-Román, S., Balderas-Pliego, M., Olivera‐Aguilar, M., Balderas-Ramírez, M. T., Galindo-Vázquez, Ó., Ramos-López, W. A., Chavarri-Guerra, Y., & Prigerson, H. G. (2026) · Palliative & Supportive Care · doi:10.1017/s1478951526102041
“However, not all individuals respond in the same way; different trajectories ofgrieving havebeen identified (Nielsen et al.2019).”
Information and counselling on post-mortem reproduction: a Delphi study with ART specialists
Rodrigues, M. D. P., Silvestre, M., & Martins, M. V. (2026) · Journal of Assisted Reproduction and Genetics · doi:10.1007/s10815-026-03880-8
“From a psychosocial perspective, a six-month period may be insufficient for emotional stabilisation following the loss of an intimate partner, particularly given the intensity of early grief reactions and the heightened vulnerability commonly observed during the first year after loss [18, 19].”
Hoyos, M. L. F. R., Nijborg, L. C. J., Norkina, I., Boelen, P. A., & Lenferink, L. I. M. (2026) · Clinical Psychology in Europe · doi:10.32872/cpe.17367
“Most individ uals can adjust to the loss (Nielsen et al., 2019), but about 3-5% experience persistent grief symptoms after losing someone to a natural cause (Rosner et al., 2021; Treml, Linde, et al., 2024), and this rate is four times higher in cases of unexpected losses (e.g., accidents)…”
Tseng, H.-W., Lee, S., Liao, K., Chen, C.-Y., Lee, H.-L., & Tsai, Y. (2026) · American Journal of Men s Health · doi:10.1177/15579883261453352
“While PGD is increasingly recognized clinically, few studies have explored how men perceive the boundary between normal grief and disorder, or how masculine expectations shape help-seeking behaviors (Lundorff et al., 2017; Maccallum et al., 2017; Nielsen et al., 2019).”
Grief reactions the first year after termination of pregnancy due to fetal anomaly
Eklund, M. V., O’Connor, M., Hammer, A., Prinds, C., Möller, S., & Hvidtjørn, D. (2026) · Death Studies · doi:10.1080/07481187.2026.2676995
Yang, L., Liu, N., Wang, L., & Xu, X. Y. (2026) · OMEGA - Journal of Death and Dying · doi:10.1177/00302228261463043
Change of pre-loss grief in relatives of cancer patients: a longitudinal study
Schmidt, V., Treml, J., Kaiser, J., & Kersting, A. (2026) · Frontiers in Psychology · doi:10.3389/fpsyg.2026.1880352
“However, Nielsen et al. (2019) included only one measurement time for pre-loss grief, not investigating how feelings of grief may change over time even before losing a loved one.”
The traumatic grief inventory self report: validation in the balinese population
Djelantik, A. A. A. M. J., Aryani, P., Picot, L., Boelen, P. A., Lesmana, C. B. J., & Kleber, R. J. (2026) · International Journal of Mental Health · doi:10.1080/00207411.2026.2706998
Soliemanifard, P., Mahmoudi, S., Rassouli, M., Ashrafizadeh, H., & Shajari, E. (2026) · International Journal of Cancer Management · doi:10.5812/ijcm-172377
Miller, E., Sanderson, L., O'Brien, J., Bradford, N. K., Holland-Batt, S., Bartlett, S. E., Scharoun, L., Caldwell, G., & Guihot, M. (2026) · Journal of Responsible Technology · doi:10.1016/j.jrt.2026.100193
Xiao, C., Wan, S., Xu, X., Yao, W., Wang, Y., & Wei, J. (2026) · Depression and Anxiety · doi:10.1155/da/5274616
“…PG-13 scale scores at pre-loss, 6 months post-loss, and 3 years post-loss using the Caregiver Cohort 2012 database and fi nally identi fi ed fi ve distinct grief trajectories among bereaved individuals who had lost a partner: low, moderate/ decreasing, high/decreasing, high, and late grief [9].”
Beyond Grief: A Meta-Ethnographic Synthesis of Healing After Traumatic Loss
Šinko, L., Þorvaldsdóttir, K. B., Malik, R., Shimoyama, Y., Hori, S., Tokumura, A., Simeral, S., Nace, T., Izzo, K. L., & Ikeda, M. (2026) · Trauma Violence & Abuse · doi:10.1177/15248380261464617
Chapter 11. Grief and Bereavement: Coping With Loss in Late Life
Kasl‐Godley, J. (2025) · American Psychiatric Association Publishing eBooks · doi:10.1176/appi.books.9781615379972.lg11
Metadata
- Authors
- Nielsen, M. K., Carlsen, A. H., Neergaard, M. A., Bidstrup, P. E., & Guldin, M.-B.
- Affiliations
- Aarhus University (DK)
- Aarhus University Hospital (DK)
- Danish Cancer Society (DK)
- Corresponding author
- Nielsen, Mette Kjærgaard
- ORCID
- Venue
- Social Science & Medicine
- Publisher
- Elsevier BV
- Published
- 2019-07
- Volume
- 232
- Pages
- 460-469
- ISSN
- 0277-9536 (ISSN-L)
- OpenAlex
- W2896464374
- Cited by
- 138
- References
- 36
- Citations by year
- 2026: 18 · 2025: 23 · 2024: 23 · 2023: 19 · 2022: 17 · 2021: 17 · 2020: 16 · 2019: 4
- FWCI
- 10.85
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Social Science & Medicine (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- Funders
- Kræftens Bekæmpelse (R160-A10389-16-S3)
- Novo Nordisk Fonden (NNF17OC0024410)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
- Social Sciences › Anthropology › Death, Funerary Practices, and Mourning
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- prolonged grief disorder, bereavement, grief trajectories, terminal illness, educational attainment, bereavement support
- MeSH terms
- Aged, Bereavement, Educational Status, Family, Female, Grief, Humans, Male, Middle Aged, Neoplasms, Prospective Studies, Spouses
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