Understanding Young People and Their Care Providers’ Perceptions and Experiences of Integrated Care Within a Tertiary Paediatric Hospital Setting, Using Interpretive Phenomenological Analysis

Introduction: Benefits of integrated care include improved health outcomes and more satisfaction with experiences of care for consumers. For children and young people with chronic and complex health conditions, their care may be fragmented due to the multitude of healthcare providers involved. This paper describes the experiences of integrated care in a paediatric tertiary hospital.

Theory and methods: Using an Interpretive Phenomenological Analysis approach, semi-structured interviews were conducted with children and young people, their parents and healthcare providers to explore stakeholders’ integrated care experiences.

Results: Nineteen interviews were completed (6 children and young people, 7 parents and 6 healthcare providers) and transcribed verbatim. Two recurrent themes were applicable across the three cohorts: ‘agency and empowerment’ and ‘impact of organisational systems, supports and structures’.

Discussion and conclusion: Stakeholders’ experiences of integrated care highlighted the need to examine the discrepancies between healthcare strategies, policies and service delivery within a complex, and often inflexible organisational structure. Power imbalance and family agency (including directly with children and young people) needs to be addressed to support the implementation of integrated care.