ArticleAmyotrophic lateral sclerosis & frontotemporal degeneration2024
Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.
Article in Amyotrophic lateral sclerosis & frontotemporal degeneration, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Grief after the death of a close relative: a study of associated factors and perceptions of bereavement support.BMC palliative care · 2026Article
- Does carer psychological inflexibility moderate the relationship between motor neurone disease symptomatology and carer anticipatory grief emotions?Journal of health psychology · 2025Article
- 'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.BMC neurology · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease.
methodsSeventy-five carers from the UK and USA participated in this cross-sectional study, between July 2021 and February 2023. Participants completed assessments on: anticipatory grief (MMCGI-SF, comprising three sub-scales: Personal Sacrifice Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation); person with MND (pwMND) behavioral changes (MiND-B) and disease severity (ALSFRS-R); carer-pwMND emotional bond (Relationship Closeness Scale), familism levels (Familism Scale), and reported hours of care provided. Multiple linear regression analyses were conducted to explore factors impacting carer AG.
resultsAG total scores showed that 50.7% of carers were experiencing common grieving reactions, 22.6% presented intense grieving emotions, and 26.7% presented low grieving responses.Disease severity (regression coefficient, β = -0.31,
conclusionThis study suggests that disease-related factors may be the strongest predictors of carer AG. Interventions addressing carers' understanding and management of MND symptoms seem crucial to support their experiences of loss and their acceptance of MND. Evidence-based support for carers in MND services is required.
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