Ana Paula Trucco, Mizanur Khondoker, Naoko Kishita, Tamara Backhouse, Helen Copsey, Eneida Mioshi
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Multiple linear regression analyses were conducted to explore factors impacting carer AG.</p><p><strong>Results: </strong>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, <i>p</i> = 0.01, 95%CI -0.91 to -0.13) and behavioral changes (β = -0.34, <i>p</i> = 0.002, 95%CI -1.45 to -0.33) predicted AG total scores (proportion of explained variation, <i>R</i><sup>2</sup>=0.38, <i>p</i> < 0.001).Regarding AG subscales, Personal Sacrifice Burden (<i>R</i><sup>2</sup>=0.43, <i>p</i> < 0.001) was predicted by disease severity (β = -0.39, <i>p</i> < 0.001, 95%CI -0.42 to -0.11). Behavioral changes predicted Heartfelt Sadness and Longing (β = -0.27, <i>p</i> = 0.03, 95%CI -0.49 to -0.03; <i>R</i><sup>2</sup> = 0.21, <i>p</i> = 0.01) and Worry and Felt Isolation (β = -0.42, <i>p</i> < 0.001, 95%CI -0.63 to -0.20; <i>R</i><sup>2</sup>=0.33, <i>p</i> < 0.001).</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":72184,"journal":{"name":"Amyotrophic lateral sclerosis & frontotemporal degeneration","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2024-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.\",\"authors\":\"Ana Paula Trucco, Mizanur Khondoker, Naoko Kishita, Tamara Backhouse, Helen Copsey, Eneida Mioshi\",\"doi\":\"10.1080/21678421.2024.2359559\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>To investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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, <i>p</i> = 0.01, 95%CI -0.91 to -0.13) and behavioral changes (β = -0.34, <i>p</i> = 0.002, 95%CI -1.45 to -0.33) predicted AG total scores (proportion of explained variation, <i>R</i><sup>2</sup>=0.38, <i>p</i> < 0.001).Regarding AG subscales, Personal Sacrifice Burden (<i>R</i><sup>2</sup>=0.43, <i>p</i> < 0.001) was predicted by disease severity (β = -0.39, <i>p</i> < 0.001, 95%CI -0.42 to -0.11). Behavioral changes predicted Heartfelt Sadness and Longing (β = -0.27, <i>p</i> = 0.03, 95%CI -0.49 to -0.03; <i>R</i><sup>2</sup> = 0.21, <i>p</i> = 0.01) and Worry and Felt Isolation (β = -0.42, <i>p</i> < 0.001, 95%CI -0.63 to -0.20; <i>R</i><sup>2</sup>=0.33, <i>p</i> < 0.001).</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":72184,\"journal\":{\"name\":\"Amyotrophic lateral sclerosis & frontotemporal degeneration\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-05-30\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Amyotrophic lateral sclerosis & frontotemporal degeneration\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1080/21678421.2024.2359559\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Amyotrophic lateral sclerosis & frontotemporal degeneration","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1080/21678421.2024.2359559","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
摘要
目的调查照顾者和疾病相关因素对支持运动神经元病患者的家庭照顾者预期悲伤（AG）的影响：来自英国和美国的 75 名照护者参与了这项横断面研究，研究时间为 2021 年 7 月至 2023 年 2 月。参与者完成了以下评估：预期悲伤（MMCGI-SF，包括三个子量表：个人牺牲负担、发自内心的悲伤和渴望、担忧和孤独感）；MND 患者（pwMND）的行为变化（MiND-B）和疾病严重程度（ALSFRS-R）；照护者与 MND 患者之间的情感纽带（关系亲密程度量表）、家庭主义水平（家庭主义量表）以及报告的照护时间。研究人员进行了多元线性回归分析，以探讨影响照护者AG的因素：AG总分显示，50.7%的照护者经历了常见的悲伤反应，22.6%的照护者表现出强烈的悲伤情绪，26.7%的照护者表现出低度悲伤反应。疾病严重程度（回归系数，β = -0.31，p = 0.01，95%CI -0.91 to -0.13）和行为变化（β = -0.34, p = 0.002, 95%CI -1.45 to -0.33）预测 AG 总分（解释变异比例，R2=0.38, p R2=0.43, p p = 0.03, 95%CI -0.49 to -0.03；R2=0.21, p = 0.01）以及担忧和感到孤立（β = -0.42, p R2=0.33, p 结论：本研究表明，与疾病相关的因素可能是预测照护者自闭症最有力的因素。针对照护者对 MND 症状的理解和管理的干预措施似乎对支持他们的失落体验和接受 MND 至关重要。需要在 MND 服务中为照护者提供基于证据的支持。
Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.
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.
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