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Abstract

We examine the experiences of Consumer Representatives participating in consumer engagement activities across a public health service in NSW, Australia. A team of Consumer Representatives and staff members use a participatory, constructivist paradigm and a hermeneutic phenomenological approach to analyse ten interviews with Consumer Representatives over three years 2017-2019, and three focus groups in 2020. We explore these experiences and identify the linked contextual factors from their points of view. Consumer Representatives were prepared to invest their time, but they needed respect. “Respect” from a consumer perspective was being meaningfully included, supported and heard, and activities needed to be purposeful and relevant. They operated in a complex environment of people and systems that were sometimes frustrating and hindered partnership. Nevertheless, they were optimistic their involvement made a difference although this may take time. Using hermeneutic phenomenology enabled the results to be seen clearly after a comprehensive and highly iterative process engaging with participants-as-researchers. The results challenge the usual default position of engaging consumers in committees and reveal other opportunities to focus on patient-centred care, as mandated by Australian National Standards for hospital accreditation. Respect is identified as a practice necessary to enhance engagement. Health organisations may improve consumer engagement outcomes as mandated for accreditation by being aware of the experiences of Consumer Representatives giving their time to partner with staff members and health systems. Staff may mitigate Consumer Representative negative experiences by being mindful of the complex people and system environment within health that can impede successful engagement.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

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