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从印度视角对丧亲家庭成员未表达的悲伤经历进行的探索性研究。

An Explorative Study of the Unspoken Grieving Experiences of Bereaved Family Members-An Indian Perspective.

作者信息

Shanmugam Dhayanandan, Raman S G, Janarthinakani M, Ilangovan Bhargavi, Banoo Shafika, Niwas K Jegan

机构信息

Consultant Psycho Oncologist, Cancare Foundation, Chennai, India.

Consultant Medical Oncologist, Cancare Foundation, Chennai, India.

出版信息

Psychooncology. 2025 Jun;34(6):e70191. doi: 10.1002/pon.70191.

Abstract

BACKGROUND

A vast majority of advanced cancer care, including palliative and end-of-life care, is provided by the family members. Loss of loved ones leads to practical, emotional and psychological distress and thereby poor quality of life.

AIM

The present study aims to explore the psycho social experiences of bereaved family members in the Indian context.

METHODS

In this prospective observational qualitative study, bereaved family members were (N = 42) interviewed using a semi-structured in-depth interview schedule, after obtaining consent. Interviews were digitally recorded, transcribed and translated by the researcher. Manual thematic analysis was used for analysing the data collected.

RESULTS

The thematic analysis of the transcripts revealed six key themes: Heightened distress, family expectations, emotional conflicts versus collusion, challenges during COVID pandemic, coping with self and others, and gratification from caregiving. Many family members maintained a positive outlook on the care they provided and shared effective coping strategies. However, most reported heightened distress due to the loss of their loved one and struggled with emotional expectations during the grieving process. Negative experiences with collusion and its consequences were also noted. The COVID-19 pandemic's impact, particularly in limiting access to support, was another significant challenge for many family members.

CONCLUSION

caregiving during illness or loss presents significant challenges, including emotional strain, family issues, and external stressors like the COVID-19 pandemic. However, caregivers often find fulfilment and develop effective coping strategies to manage these difficulties. It is essential to address both the emotional and practical aspects of caregiving, particularly during crises, to support family members throughout their journey.

摘要

背景

包括姑息治疗和临终关怀在内的绝大多数晚期癌症护理工作由家庭成员提供。失去亲人会导致实际、情感和心理上的困扰,从而降低生活质量。

目的

本研究旨在探讨印度背景下失去亲人的家庭成员的心理社会经历。

方法

在这项前瞻性观察性定性研究中,在获得同意后,使用半结构化深度访谈提纲对42名失去亲人的家庭成员进行了访谈。访谈由研究人员进行数字录音、转录和翻译。采用手动主题分析法对收集到的数据进行分析。

结果

对访谈记录的主题分析揭示了六个关键主题:痛苦加剧、家庭期望、情感冲突与勾结、新冠疫情期间的挑战、应对自己和他人以及照顾带来的满足感。许多家庭成员对他们提供的护理保持积极的看法,并分享了有效的应对策略。然而,大多数人报告说,由于失去亲人而痛苦加剧,在悲伤过程中与情感期望作斗争。还注意到勾结的负面经历及其后果。新冠疫情的影响,尤其是限制了获得支持的机会,对许多家庭成员来说是另一个重大挑战。

结论

在疾病或失去亲人期间提供护理面临重大挑战,包括情感压力、家庭问题以及新冠疫情等外部压力源。然而,护理人员通常会找到满足感,并制定有效的应对策略来应对这些困难。在整个过程中支持家庭成员,尤其是在危机期间,解决护理的情感和实际方面的问题至关重要。

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