Speech Pathology Department, Queensland Children's Hospital, PO Box 3474, Brisbane, QLD, 4101, Australia.
School of Health & Rehabilitation Sciences, The University of Queensland, Brisbane, QLD, Australia.
Dysphagia. 2021 Jun;36(3):419-429. doi: 10.1007/s00455-020-10152-9. Epub 2020 Jul 2.
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.
进食障碍会对儿童及其家庭产生重大影响。获得支持性的多学科护理是改善治疗效果的关键；然而，有许多因素会影响服务的可及性。本研究采用混合方法设计，调查了澳大利亚一家全州政府资助的三级儿科喂养诊所的家长对服务的体验和满意度。37 名儿童（年龄 7 周至 17 岁）的家长参与了这项研究，他们居住在距离服务中心 6-1435 公里的地方。每位家长都完成了关于满意度（儿童服务客户满意度问卷-8）和费用的问卷，并接受了半结构化访谈。费用既包括与就诊相关的直接费用（如住宿），也包括间接费用（因就诊而损失的生产力）。研究结果表明，家长对孩子的喂养服务非常满意，但在就诊过程中存在较大的障碍，85%的家长表示，孩子的就诊至少需要半天时间。每次就诊的总费用在 53 至 508 澳元之间。访谈确定了三个主要的障碍主题：距离和旅行、对日常活动的影响（如工作、上学），以及家长对孩子在诊所环境中喂养技能的不准确认知。这些问题也受到一个总体主题的影响，即家长愿意“尽其所能”满足孩子的需求，而不考虑这些障碍。服务提供者应意识到影响家庭获得服务的因素，并考虑适当的替代服务提供模式，以帮助减轻与获得必要护理相关的家庭负担。
