What do carers of people with High Grade Glioma perceive could improve their preparedness to care; and what additional support do they require?

IF 4.6 Q2 MATERIALS SCIENCE, BIOMATERIALS
James J. Clarke, G. Halkett, Emma McDougall, H. Dhillon, E. Lobb, J. L. Phillips, PL Hudson, Anna K Nowak
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Abstract

Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with High Grade Glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore: i) what carers of people with HGG perceive could improve their preparedness to care; and ii) what needs carers reported they required additional support with. Responses from 188 carers of patients with HGG participating in a randomised controlled trial of the Care-IS intervention were analysed to identify reported unmet needs. Of this larger sample, 92 participants answered a qualitative question seeking to identify perceived unmet needs in carer preparedness over 12 months. These responses comprised the data for the current secondary analysis. Content analysis was used to analyse the qualitative data and observe trends across participant responses. Five overarching themes were identified: carer needs, providing emotional and practical care, coping with uncertainty, coping with the consequences of illness progression and processing and supporting end of life care. Notably, the content analysis identified differences in response numbers between groups in the Care-IS trial, particularly with the control group having more needs regarding illness progression and end of life care. Future interventions aimed at improving the well-being and preparedness of carers of people with HGG should consider providing better support centred on carer needs, their changed circumstances, living with uncertainty and care transition.
高级胶质瘤患者的照护者认为哪些方面可以改善他们的照护准备;他们还需要哪些额外的支持?
在确诊为高级别胶质瘤(HGG)患者的家庭照顾者中,可以观察到相当程度的压力、紧张和较差的心理健康。了解这些照护者所报告的未得到满足的需求将有助于未来采取干预措施来满足这些需求,从而改善他们的照护准备和福祉。在这项二次分析中,我们旨在探索:i) HGG 患者的照护者认为哪些方面可以改善他们的照护准备;ii) 照护者报告他们需要哪些额外的支持。 我们分析了 188 名参与 Care-IS 干预随机对照试验的 HGG 患者照护者的回答,以确定他们报告的未满足需求。在这个较大的样本中,有 92 名参与者回答了一个定性问题,该问题旨在确定 12 个月内照顾者准备工作中未满足的需求。这些回答构成了当前二次分析的数据。内容分析法用于分析定性数据并观察参与者回答的趋势。 确定了五大主题:照护者需求、提供情感和实际照护、应对不确定性、应对疾病发展的后果以及处理和支持生命末期照护。值得注意的是,内容分析确定了护理-IS 试验中各组之间在回复数量上的差异,尤其是对照组在疾病进展和临终关怀方面有更多的需求。 未来旨在改善 HGG 患者照护者的福祉和准备状态的干预措施应考虑提供更好的支持,重点关注照护者的需求、他们所处的环境变化、生活的不确定性以及照护过渡。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
ACS Applied Bio Materials
ACS Applied Bio Materials Chemistry-Chemistry (all)
CiteScore
9.40
自引率
2.10%
发文量
464
期刊介绍: ACS Applied Bio Materials is an interdisciplinary journal publishing original research covering all aspects of biomaterials and biointerfaces including and beyond the traditional biosensing, biomedical and therapeutic applications. The journal is devoted to reports of new and original experimental and theoretical research of an applied nature that integrates knowledge in the areas of materials, engineering, physics, bioscience, and chemistry into important bio applications. The journal is specifically interested in work that addresses the relationship between structure and function and assesses the stability and degradation of materials under relevant environmental and biological conditions.
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