GP113 Caregiver perceptions of a complex care service: implications for service development

Background Changing medical care has resulted in growing numbers of Children with Medical Complexity (CMC). CMC have high care needs, often unmet by traditional healthcare models. In response to this need, the Complex Care Service (CCS) at The Royal Children’s Hospital (RCH) in Melbourne was created. While there was preliminary pilot data on the level of parent satisfaction with the service, we did not have sufficient knowledge of the value and importance of the various components of the service or parent satisfaction as the service expanded. Aim The aim of this study was to determine 1) what caregivers value most about the CCS service at the RCH and 2) explore caregiver perceptions of care. Methods All caregivers of children who were enrolled in the CCS at RCH in April 2017 (n = 103) were invited to participate. A purposefully designed survey explored their perceptions of care and included questions regarding: the extent to which the CCS improved patient quality of care; the extent to which the CCS components added value to patient care; satisfaction with the CCS; and likelihood of recommending the service to other families. Participants were invited to answer open ended questions about what the CCS did well, and what could be improved, and were invited to provide general comments. Results Responses were received from 53 families (51%). We found that 24 hour phone advice; coordination of appointments; a key contact; and access to timely information, are the most important components of a service for CMC for caregivers. Overall, levels of satisfaction with the RCH service were high - over 90% of caregivers indicated that they were very/somewhat satisfied with care. Further, over 90% of participants perceived that the CCS improved their child’s quality of care. Coordination, communication, family centred care, quality care and access were emergent themes in comments. Conclusion This study provides important information for the design and operation of services for CMC in hospitals throughout Australia and further afield. Our findings highlight the importance of the key contact and family centred care This has implications for practice, as maintaining the quality of the service as it expands and is implemented more widely is a major sustainability challenge. It is crucial that we have a detailed understanding of what elements are required to support effective care coordination, to achieve successful implementation on a large scale.