“It Takes a Whole Day, Even Though It’s a One-Hour Appointment!” Factors Impacting Access to Pediatric Feeding Services

• DOI: 10.1007/s00455-020-10152-9
• Publication Date: 2020-07-02T20:02:26Z
• Authors: Madeline Raatz; Elizabeth C. Ward; Jeanne Marshall; Clifford Afoakwah; Joshua Byrnes
• Keywords: Caregiver experiences; Parents; 3616 Speech and Hearing; 330; Clinical sciences; Speech and Hearing; 03 medical and health sciences; Family-centered care; 0302 clinical medicine; Pediatric feeding; Surveys and Questionnaires; Humans; 2715 Gastroenterology; Family; Child; 360; Allied health and rehabilitation science; Gastroenterology; Australia; Access; Deglutition disorders; Deglutition; 3. Good health; 2733 Otorhinolaryngology; Otorhinolaryngology; Patient Satisfaction; Dentistry; Health economics

Feeding disorders can have a significant impact on children and their families. Access to supportive multidisciplinary care is central to improving outcomes; however, there are numerous factors that can impact service access. Using a mixed methods design, the current study examined parents' experiences and satisfaction with accessing a state-wide government-funded tertiary pediatric feeding clinic in Australia. Parents of 37 children (aged 7 weeks to 17 years) participated in the study, residing 6-1435 km from the service. Each completed questionnaires regarding satisfaction (Client Satisfaction Questionnaire-8 Child Services) and costs, and participated in a semi-structured interview. Costs were measured as both direct (e.g., accommodation) and indirect (measured as lost productivity) associated with accessing their feeding appointment. Results revealed parents were highly satisfied with their child's feeding services, but considerable impacts were reported in accessing the service with 85% of the group noting that attending their child's appointment took at least half a day. The total cost per appointment ranged between $53 and $508 Australian dollars. Interviews identified three main barrier themes: distance and travel, impact on daily activities (e.g., work, school), and parent perception of inaccurate representation of their child's feeding skills within the clinic environment. The issues raised were also tempered by an overarching theme of parental willingness to do "whatever was needed" to meet their child's needs, regardless of these barriers. Service providers should be cognizant of the factors that impact access for families and consider alternative service-delivery models where appropriate to help reduce family burden associated with accessing necessary care.