A qualitative case study exploring service users' and providers' experiences of continuity of care when transitioning from early intervention teams : the case of autism spectrum disorder /

Abstract

Seamless and continuous care across transitions are the gold standard for an individual with Autism Spectrum Disorder (ASD) when moving through services, agencies or organisations. However, little is known about the experience of continuity of care in this context. The aim of this study was to explore service users’ and providers’ perspectives of continuity of care when children with ASD transition from Early Intervention Teams (EITs) to Primary, Community and Continuing Care Teams. Key concepts of the Chronic Illness and Care Trajectory Framework were utilised as a ‘conceptual lens’ to explore participants’ perspectives on this. The model highlights the concept of the ‘journey’ through health and social care services, the ‘work’ that is required to manage this transition and the ‘social-organisational context’ influencing this work.

Semi-structured interviews were completed with caregivers of children with ASD who had transitioned services within 12 months of the study (n=5). Service providers were also interviewed (n=14) to contextualise service users’ accounts and explore solutions to problematic experiences.

Parents’ expectations of this transition are dissimilar to their experiences, leading to emotional and ‘work’ consequences. Participants report that they are not ‘known’ in EIT (relational continuity) which heightens the need for effective information transfer(informational continuity) when transitioning. Caregivers report that they are burdened by the responsibility of communicating key details regarding their children’s complex trajectories to new service providers. The context and approaches to care vary significantly when the child transitions services(management continuity). Service providers concur that information sharing practices need to be more streamlined to ensure a smoother transition. Results of this study highlight the ‘work’ involved in continuity of care when transitioning and propose solutions to improve experienced continuity of care. The findings offer novel insights into continuity of care experiences associated with health and social care transitions for caregivers of children with ASD.