Mothers’ perspectives of support for their child with feeding/swallowing disorders

Abstract

ABSTRACT Mothers of children with feeding and/or swallowing disorders play a significant and important role in their children’s care, yet little is known about their perspectives regarding the support they seek and receive to perform this role. This study investigates how mothers regard the support available to them. This included support they needed, sought, had access to, or received, during their journey with their child/ren. Semi-structured interviews were conducted with 16 mothers of children with feeding and/or swallowing disorders. A unique comprehensive exploration of support was ensured using Bronfenbrenner’s ecological framework. This allowed for the identification of the sources of support, at an individual and family level, service provider and policy level for children with feeding and/or swallowing disorders in Australia. Transcripts were analysed thematically to identify common themes and patterns. The mothers expressed their strong desire to receive knowledge of their child’s condition from health professionals. Their report was consistent with what is known of the barriers in this field of practice including diagnostic confusion of feeding and/or swallowing disorders and the often-fragmented service level response offered to families. The recommendations they offered included better interprofessional communication, inclusion of the family as key team members and a better understanding of the bio-psychosocial nature and impact these conditions have, not only on the child, but on the whole family unit.