Dysphagia and feeding difficulties post-pediatric ingestion injury: Perspectives of the primary caregiver. (December 2017) - Follent, Anna M.
Abstract: Purpose: To explore the experiences of children with dysphagia and/or feeding difficulties post-chemical or button battery ingestion injury from the perspective of the primary caregiver. Method: Five primary caregivers of children with a history of dysphagia and/or feeding difficulties post-ingestion injury (4 chemical, 1 button battery) completed the Children's Picky Eating Questionnaire (CPEQ), and participated in a semi-structured interview. Interviews explored experiences of caring for a child with dysphagia and/or feeding difficulties, impressions of services and supports, and additional impacts to the child and family. Content analysis was used to identify key themes. Result: Primary caregiver report and CPEQ results confirmed all children had some degree of persisting dysphagia and/or feeding difficulties at time of interview (mean 4.13 years' post-injury). Interviews identified five key themes: 1) The initial trauma of the injury, 2) The experience of associated and ongoing medical issues, 3) Managing altered oral intake, 4) Experiences of services and support, and 5) Impacts on the child, primary caregiver, and wider family unit. All caregivers reported significant challenges and concerns, and potential areas of service improvement were highlighted. Conclusion: The current data highlights specific issues experienced by primary caregivers, and poses areas for improving primary caregiver and family supports. Family-centered models of care are needed to support the whole family unit in caring for a child with dysphagia and/or feeding difficulties post-ingestion injury.