Consumer experiences of care coordination for people living with chronic conditions and other complex needs: an inclusive and co-produced research study

Abstract

ObjectiveThe aim of this study was to explore consumer experiences of care coordination within Barwon Health's Hospital Admission Risk Program (HARP) located in Geelong, Victoria.MethodsThe study design was qualitative description informed by phenomenology and inclusive and co-production methodology. Semi-structured interviews were conducted with a purposive sample of six consumers living with chronic conditions and other complex needs. Participants were asked about their lived experience related to accessing the service, communication, and health and supports before and after accessing the service using an interview guide. Interviews were audio-recorded and transcribed verbatim for thematic analysis.ResultsFive themes were identified: (1) experiencing authentic, values-based care; (2) collaborative care and working together; (3) gaining independence; (4) improved health and quality of life; and (5) limited understanding of HARP at the start. Overall, participants' experiences were positive, which related to improved health, quality of life, and sustainable supports. Although gains were experienced, most of the participants identified that their knowledge of HARP was limited when services commenced, which is an area for service improvement.ConclusionThis research begins to address the knowledge gap related to consumer experiences of care coordination. Findings highlight the importance of providing person-centred, authentic and values-based care, listening authentically, and promoting consumer voice within services. The study demonstrates that inclusive, co-design research is feasible in this service context, and further research is recommended into how stakeholders understand the function of care coordination services to promote health and prevent hospital readmissions, and improve consumer participation.What is known about the topic?Care coordination is multifaceted, with the primary purpose of facilitating person-centred care through appropriate and timely delivery of healthcare services. Despite the effectiveness of care coordination programs in preventing avoidable hospital admissions and reducing hospital length of stay, there is a paucity of research that has investigated consumer perspectives. There is also limited research that has adopted an inclusive research design of knowledge co-production where clinicians and consumers are included as equal members of the research team.What does this paper add?The study findings provide evidence into the value of care coordination from the perspective of consumers living with chronic conditions and other complex health and psychosocial issues. The findings also extend evidence into person- and consumer-centred care through understanding the qualities of care coordination practice that promote authenticity, integrity and positive health outcomes. Listening is identified as a critical element of authentic, values-based care, and as a care coordination intervention. Finally, the study demonstrates that inclusive, co-design research is feasible in this service context, and a larger-scale Experience-Based Co-Design study is recommended to investigate how stakeholders understand the function of care coordination services to promote health and prevent hospital readmissions and improve consumer participation.What are the implications for practitioners?The study informs practitioners of consumer lived experience of care coordination. Practitioners are recommended to apply the findings to practice by adopting an authentic, values-based and person-centred care approach described in the study findings. Service improvement initiatives are recommended to focus on increasing awareness of care coordination services through consumer participation and the meaningful inclusion of consumer voice, which could focus on education for referring health and social care professionals.