Parents/carers of children diagnosed with feeding and/or swallowing difficulties have a significant and important role in the care of their child, yet little is known of their perspectives on the support they seek. This study used an Interpretative Phenomenological Analysis to describe what parents/carers’ report is supportive, what is un-supportive or may even hinder them and where they seek that support from, to assist them in achieving successful feeding and swallowing for their child. Semi-structured interviews were conducted with 16 mothers of children with feeding and/or swallowing difficulties. These were then analysed for common themes and using a socio-ecological perspective (Bronfenbrenner, 1986) to examine the influences on the child and their family and how different types of support interact and impact on them. The mothers expressed their strong desire to receive knowledge of their child’s condition from health professionals. Furthermore, there was consistent report of being unable to access services either due to not knowing who to ask or more worryingly being denied access to those services by general practitioners who were not in agreement with the perceived need. The mothers’ views were consistent with what is known of the barriers in this field of practice including diagnostic confusion of feeding and/or swallowing difficulties and the often fragmented response currently 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.
Julie Tan, Bsc Speech Pathology
Julie is a certified practising speech pathologist who has worked with both children and adults focused on their communication and feeding skills, for over twenty-five years. She lives in Perth, Australia but worked for many years in both New Zealand and in Britain, she trained in Glasgow, Scotland, her hometown. Collaborative practice with her client, their families, carers and all her professional colleagues is her passion.
She has post-graduate qualifications in adult acquired dysphagia & paediatric feeding and swallowing disorders. She established the MEAHLS team, (Mealtime and Eating Allied Health Liaison Service), whilst working at a disability service provider, one of the first interdisciplinary and community-based feeding teams in Perth, Australia.
She is currently a prospective PhD candidate at Curtin University, where her research is focused on the families’ perspectives of the support available to them, for their child with feeding and/or swallowing disorders.