Department of Psychology, Università Cattolica del Sacro Cuore, Milan, Italy and.
Heart-Respiratory Rehabilitation Unit, IRCCS Fondazione Don Carlo Gnocchi, Milan, Italy.
Amyotroph Lateral Scler Frontotemporal Degener. 2024 Feb;25(1-2):75-87. doi: 10.1080/21678421.2023.2255628. Epub 2023 Sep 6.
Caregivers of Amyotrophic Lateral Sclerosis (ALS) patients experience varying psychological responses following the patient's death, including sadness, loneliness, guilt, and a loss of purpose.
This research aims to investigate the caregiver journey experienced from the time of diagnosis to the loss of a care recipient, with a specific focus on understanding the factors that contribute to improved coping with bereavement.
The present study used the Interpretative Phenomenological Approach (IPA) to qualitatively explore the accounts of 41 Italian bereaved caregivers of people affected by ALS (Mean Age = 59.78; Female: 60.98%; Male: 39.02%).
Results revealed 5 overarching themes representing 5 macro areas that emerged from the analysis of the interviews ("", "", "", "", ""), these were further defined based on 12 main themes, which were, in turn, articulated into 30 subthemes. The transition from life before ALS ("") to caregiver life (compared to the color "") was a "", during which caregivers had to change their needs. However, life after the person living with ALS' death was both characterized by a sense of "" and "", and a general need for "" and "".
Results emphasize the need to improve the psychological support offered to caregivers of person living with ALS after the patient's death, tailoring it to the specificity of the condition, to meet their emotional needs, reduce isolation and help them cope with practical challenges and plans.
肌萎缩侧索硬化症（ALS）患者的照顾者在患者去世后会经历不同的心理反应，包括悲伤、孤独、内疚和失去目标感。
本研究旨在调查从诊断到照顾对象丧失期间照顾者的经历，特别关注理解有助于改善丧亲应对的因素。
本研究使用解释现象学方法（IPA）对 41 名意大利丧亲的 ALS 患者照顾者的叙述进行定性探索（平均年龄=59.78；女性：60.98%；男性：39.02%）。
结果揭示了 5 个总体主题，代表了从访谈分析中出现的 5 个宏观领域（“”、“”、“”、“”、“”），这些主题进一步基于 12 个主要主题进行定义，这些主题又进一步细分为 30 个次主题。从肌萎缩侧索硬化症前的生活（“”）过渡到照顾者的生活（与颜色“”相比）是一个“”，在此期间，照顾者必须改变他们的需求。然而，肌萎缩侧索硬化症患者死亡后的生活既有“”的感觉，又有“”的感觉，以及对“”和“”的普遍需求。
结果强调需要改善肌萎缩侧索硬化症患者死亡后对照顾者的心理支持，根据病情的特殊性进行调整，以满足他们的情感需求，减少孤立感，并帮助他们应对实际挑战和计划。
