Self-advocacy experiences in coping with dysphagia among patients with oral cancer: A qualitative study

This study aimed to explore the experiences of patients with oral cancer in coping with dysphagia from the perspective of self-advocacy.

A descriptive qualitative research design was adopted. From March to May 2024, face-to-face, in-depth semi-structured interviews were conducted with 21 patients with oral cancer at a tertiary cancer hospital. The interview guide was developed based on the self-advocacy framework, and data were analyzed using the directed content analysis method.

Findings were organized within the self-advocacy framework, yielding three main categories and eight sub-categories: 1) Thoughts and cognition - cognitive misunderstanding, realignment of expectations and goals, and loss of control; 2) Actions for self - communication barriers with medical professionals, limited reliance on physicians, and information seeking via the internet; 3) Utilization of resources - two-way tension of family support, dual effects of peer support, and structural economic exclusion.

Patients with oral cancer face multiple barriers in coping with dysphagia, including cognitive limitations, insufficient medical coping strategies, and challenges in resource utilization. These factors interact with one another, influencing patients' self-advocacy and coping status.