Client perspectives on living with dysphagia in the community

Abstract

Purpose

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.

Method

Using a qualitative descriptive approach grounded in phenomenology, individuals with dysphagia were interviewed (n = 15) about their experiences living with and managing dysphagia at home.

Result

Thematic analysis revealed an overarching theme of “Journey of discovery – learning to live with dysphagia,” 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.

Conclusion

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.

Keywords:

• dysphagia
• lived experience
• speech-language pathology
• community
• qualitative

Acknowledgements

The authors wish to acknowledge the inspiring participants in this study who so openly shared their experiences for research. Thanks also go to research assistants, Pooja Gandhi, Judy Yushan Su, Lauren Rodgers, Maddison Napier and Laura Rainey who assisted with transcribing the interviews.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.