Menzies Health Institute Queensland, Griffith University, Brisbane, Australia.
School of Allied Health Sciences, Griffith University, Brisbane, Australia.
Int J Speech Lang Pathol. 2021 Apr;23(2):201-212. doi: 10.1080/17549507.2020.1765020. Epub 2020 Jun 11.
Literature to date describing the lived experience of dysphagia has predominantly focussed on the clinical populations of stroke and head and neck cancer. The current study aimed to understand the experience of people with dysphagia of varying aetiologies living at home in the community.
Using a qualitative descriptive approach grounded in phenomenology, individuals with dysphagia were interviewed ( = 15) about their experiences living with and managing dysphagia at home.
Thematic analysis revealed an overarching theme of which described the process of managing dysphagia at home. This theme was characterised by three subthemes: (1) The story of dysphagia; (2) Engaging with support networks; and (3) Limited community awareness of dysphagia.
This study highlights a range of psychosocial impacts individuals with dysphagia living at home may experience. Participants described how managing other health conditions alongside dysphagia influenced their perspectives about dysphagia. speech-language pathologists must consider individual client health priorities and provide support for not just the physical but also the psychosocial needs of clients. The reduced profile of dysphagia in our communities continues to be an ongoing barrier for clients with dysphagia and their families.
迄今为止，描述吞咽困难患者生活体验的文献主要集中在中风和头颈部癌症的临床人群上。本研究旨在了解在社区家中患有不同病因的吞咽困难患者的生活体验。
本研究采用扎根现象学的定性描述方法，对 15 名吞咽困难患者进行了关于他们在家中管理吞咽困难的生活体验的访谈。
主题分析揭示了一个总体主题，即描述了在家中管理吞咽困难的过程。该主题的特征是三个子主题：（1）吞咽困难的故事；（2）与支持网络的互动；（3）社区对吞咽困难的认识有限。
本研究强调了在家中吞咽困难患者可能经历的一系列心理社会影响。参与者描述了在吞咽困难的同时管理其他健康状况如何影响他们对吞咽困难的看法。言语语言病理学家必须考虑到患者的个体健康优先事项，并为患者提供支持，不仅要关注身体需求，还要关注心理社会需求。我们社区中吞咽困难的知名度较低，这仍然是吞咽困难患者及其家属面临的一个持续障碍。
