Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology

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, p = 0.01, 95%CI −0.91 to −0.13) and behavioral changes (β = −0.34, p = 0.002, 95%CI −1.45 to −0.33) predicted AG total scores (proportion of explained variation, R 2=0.38, p < 0.001). Regarding AG subscales, Personal Sacrifice Burden (R 2=0.43, p < 0.001) was predicted by disease severity (β = −0.39, p < 0.001, 95%CI −0.42 to −0.11). Behavioral changes predicted Heartfelt Sadness and Longing (β = −0.27, p = 0.03, 95%CI −0.49 to −0.03; R 2 = 0.21, p = 0.01) and Worry and Felt Isolation (β = −0.42, p < 0.001, 95%CI −0.63 to −0.20; R 2=0.33, p < 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.