Department of Nursing and Healthcare Sciences, School of Health and Social Sciences, Munster Technological University, Kerry Campus, Tralee, Ireland.
Department of Speech & Language Therapy, School of Allied Health, University of Limerick, Limerick, Ireland.
Disabil Rehabil. 2022 Sep;44(18):4949-4965. doi: 10.1080/09638288.2021.1922518. Epub 2021 May 25.
The lived experiences of a gastrostomy tube (GT) in adults with neurodegenerative diseases (NDDs) are not well understood. The aim of this qualitative meta-synthesis was to review and synthesise the available evidence to inform clinical practice and identify research gaps.
Meta-ethnographic synthesis of qualitative studies was conducted with systematic searching of eight databases from inception to March 2021. Qualitative studies reporting personal experiences of GTs in adults with NDDs were identified. New theories were developed during translation of concepts from each study and combined as a "line-of-argument" synthesis. Patient and public involvement was incorporated as two of the authors are living with an NDD and a GT.
Of 2863 unique records identified, only nine fulfilled the review criteria. All studies recruited participants with motor neurone disease (MND); no other NDDs were represented. Two main themes emerged: decision making and living with GT. Decision making was the predominant theme and data regarding living with GT were sparse. There is limited research on the lived experience of a GT in adults with NDDs. The lived experience of GT in MND is complex and individualised. Future research is indicated to inform clinical practice.Implications for rehabilitationEvidence related to the lived experiences of gastrostomy tube (GT) in neurodegenerative diseases (NDDs) is lacking especially in relation to the time after GT insertion.Decision making in relation to GT is a complex and individualised psychological process for some people, while others perceive no decisional conflict.Support from healthcare professionals is crucial during the decision-making time and should not cease after GT insertion.Support from healthcare professionals can help resolve any clinical complications and also incorporate GT into everyday routines.Healthcare professionals should be aware that their views on the benefits and problems related to GT may differ to those of individuals with a NDD.
患有神经退行性疾病（NDD）的成年人使用胃造口管（GT）的体验尚未得到充分理解。本质性元分析的目的是回顾和综合现有证据，以为临床实践提供信息，并确定研究空白。
系统检索了从开始到 2021 年 3 月的 8 个数据库，对定性研究进行了元人种学综合分析。确定了报告患有 NDD 的成年人使用 GT 的个人体验的定性研究。在从每项研究翻译概念的过程中发展了新理论，并将其组合为“论证线”综合。纳入患者和公众参与，因为两位作者都患有 NDD 和 GT。
在 2863 条独特记录中，只有 9 条符合审查标准。所有研究均招募了患有运动神经元病（MND）的参与者；没有其他 NDD 代表。出现了两个主要主题：决策和 GT 生活。决策是主要主题，关于 GT 生活的数据很少。关于患有 NDD 的成年人 GT 生活体验的研究有限。MND 中 GT 的生活体验复杂且因人而异。需要进一步的研究来为临床实践提供信息。
缺乏与神经退行性疾病（NDD）患者胃造口管（GT）生活体验相关的证据，特别是在 GT 插入后的时间。对于某些人来说，GT 的决策是一个复杂且因人而异的心理过程，而对于其他人来说，则没有决策冲突。在决策期间和 GT 插入后，医疗保健专业人员的支持至关重要。医疗保健专业人员的支持有助于解决任何临床并发症，并将 GT 纳入日常生活常规。医疗保健专业人员应该意识到，他们对 GT 相关的益处和问题的看法可能与患有 NDD 的人不同。
