Experiences Associated with Pediatric Dysphagia: A Mother’s Perspective

Abstract

Background : Pediatric dysphagia arises from various etiologies but often coincides with complex health issues. Tasks associated with the management of pediatric dysphagia are often unfamiliar and arduous, leaving a heavy burden on the primary caregiver. Little is known regarding how these experiences affect caregivers and family systems. Aims : This study was conducted to examine dysphagia and its vast implications from a caregiver’s perspective in order to reveal a perceived role in management. Methods & Procedures : A qualitative case study design was chosen. Consistent with this tradition of inquiry, naturalistic data were collected through ethnographic interviewing procedures, collection of artifacts for analysis, and multiple lamination sessions obtained through electronic mail messages. These data were analyzed inductively, in which authors independently reviewed data several times and coded the data line by line with a category of idea or action that represented the raw data. As data collection and analysis continued in a cyclical fashion, several initial categories clumped into more abstract overarching themes related to the participant’s experience with dysphagia. Outcomes & Results : Data interpretation suggests that encounters associated with caring for multiple children with dysphagia are multifaceted and that consequences of dysphagia extend far beyond the individual with dysphagia and into the entire family system. Conclusion : This paper argues for further consideration of social and affective factors in pediatric dysphagia management and the inspection of dysphagia from a dynamic lens that accounts for all layers of the disorder.