AI Article Synopsis

  • - The study examined how various factors related to caregivers and the disease itself impact anticipatory grief (AG) in family members caring for people with Motor Neurone Disease (MND) across the UK and USA.
  • - Out of 75 caregivers surveyed, over half reported experiencing common grief reactions, with notable predictors of AG being the severity of the disease and behavioral changes in the person with MND.
  • - The findings highlight that understanding and managing MND symptoms is essential for caregivers' emotional well-being, indicating a need for supportive resources and interventions tailored to them.

Article Abstract

Objective: To investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease.

Methods: Seventy-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.

Results: AG 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,  = 0.01, 95%CI -0.91 to -0.13) and behavioral changes (β = -0.34,  = 0.002, 95%CI -1.45 to -0.33) predicted AG total scores (proportion of explained variation, =0.38,  < 0.001).Regarding AG subscales, Personal Sacrifice Burden (=0.43,  < 0.001) was predicted by disease severity (β = -0.39,  < 0.001, 95%CI -0.42 to -0.11). Behavioral changes predicted Heartfelt Sadness and Longing (β = -0.27,  = 0.03, 95%CI -0.49 to -0.03; = 0.21,  = 0.01) and Worry and Felt Isolation (β = -0.42,  < 0.001, 95%CI -0.63 to -0.20; =0.33,  < 0.001).

Conclusion: This 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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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11523914PMC
http://dx.doi.org/10.1080/21678421.2024.2359559DOI Listing

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