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Trucco, Ana Paula, Khondoker, Mizanur 
ORCID: https://orcid.org/0000-0002-1801-1635, Kishita, Naoko ORCID: https://orcid.org/0000-0001-8453-2714, Backhouse, Tamara ORCID: https://orcid.org/0000-0001-8194-4174, Copsey, Helen and Mioshi, Eneida
(2024)
Factors affecting anticipatory grief of family carers supporting people living with motor neurone disease: the impact of disease symptomatology.
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.
ISSN 2167-8421
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, R2=0.38, p < 0.001). Regarding AG subscales, Personal Sacrifice Burden (R2=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; R2 = 0.21, p = 0.01) and Worry and Felt Isolation (β = −0.42, p < 0.001, 95%CI −0.63 to −0.20; R2=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.
| Item Type: | Article |
|---|---|
| Additional Information: | Funding information: The author(s) disclosed the following financial support for the research, authorship and/or publication of the present article: APT’s PhD studentship is supported by MND Scotland. EM and TB are supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. TB also received support from the Alzheimer’s Society funded through a Post-Doctoral Fellowship. |
| Uncontrolled Keywords: | anticipatory grief,behavioral changes,carers,disease severity,factors,motor neurone disease,neurology,clinical neurology ,/dk/atira/pure/subjectarea/asjc/2800/2808 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Centres > Population Health Faculty of Science > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Epidemiology and Public Health Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 10 Jun 2024 11:30 |
| Last Modified: | 10 Jun 2024 11:30 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/95449 |
| DOI: | 10.1080/21678421.2024.2359559 |
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