Evidenced-based practice and the lived experience

Angus Buchanan, Associate Editor, Australian Occupational Therapy Journal

The Royal Commission into Aged Care Quality and Safety (2021) highlighted major concerns regarding the care of our elderly citizens, many which were emphasised in the 2019 submission made to the Commission by Occupational Therapy Australia (OTA, 2019). In 2022, the Australian Occupational Therapy Journal (AOTJ) published an article by Calderone et al. titled Occupational Therapy in Australian Residential Aged Aare Facilities: A systematic mapping review. The study concluded “This review identified that there is a dearth of Australian occupational therapy literature. This creates challenges for occupational therapists seeking evidence to guide their practice to optimise resident health and well-being and for national associations seeking to lobby for the profession. Consequently, there is a crucial need to develop the evidence base to support the profession within this practice setting and, ultimately, residents.” (p. 625)

As occupational therapists we strive to deliver quality services that are evidence based, contemporary and will have the greatest impact on our client’s wellbeing. There is a rapidly increasing expectation of the visibility of evidence within our practice, yet it would appear in areas such as aged care, research evidence may not be available.

We have been taught to understand and apply the evidence-based framework (Bennett and Bennet 2000) to our work as it is fundamentally good practice to consider the efficacy and veracity all aspects of what we do and why we do it. I strongly believe most practitioners aim to engage in evidence-based practice that supports excellent client outcomes. I recently attended the OTA National Conference in Cairns with 1,100+ other occupational therapists, where many of our colleagues presented their research connected to various levels of research evidence to support their interventions. One important part of the National Conference was the presence and voice of consumers. Consumer voice and experience is an important component of evidence-based practice that must be heard and integrated into our work.

In Cairns we heard directly from consumers and their lived experience insights were powerful. While hearing directly from our clients is critical, this may not be always possible and consumer voice for many of our most vulnerable clients is vested in guardians and advocates. During one of the presentations in Cairns, I had a realisation that while many people in the room are occupational therapists, they are also likely a voice for consumers of services, as is the case for me.

My wife and I are the co-guardians, power of attorney, and advocates for our 94-year-old aunt who lives with dementia and resides in an aged care facility. It is a privilege and responsibility that someone, when they are capable, places their complete trust in you to make decisions when they can’t. We have made many big and small decisions and have needed to be the consumer voice, as my aunt is now unable to speak for herself or often not afforded the respect and time to do so. As I am writing this, we are in the process of finding a new care facility so my aunt can experience a significantly improved quality of life. For the last 18 months, my wife and I have watched my aunt experience services that are inadequate to meet her needs, do not support her personhood and at times her human rights, do not reflect contemporary evidence-based practice, and do always not reflect aged care standards.

We are and need to be the consumer voice for my aunt. My wife, who is a nurse, and I have taken a respectful, evidenced-based approach to try and work with the facility, including allied health practitioners, to improve outcomes for my aunt – sadly with little tangible impact. At times we have felt disrespected, ignored, been made to feel like we are being unreasonable and demanding, and above all wrong about the person we know a lot better than the very transitory staff. As an occupational therapist, I know things can and should be better and there should be compelling evidence to support this.

I am deeply grateful to be in a profession that believes in the value of evidence. I am; however, challenged in my role as a substitute consumer voice about not being heard, and to see my profession within the system delivering substandard care to some of our most vulnerable community members. I would like to hope that I am a sample of one but sadly do not believe this to be the case. As a nation we are struggling with the provision of quality aged care supports and continue to be challenged by the outcomes from the Royal Commission. As occupational therapists we should have significant evidence to support and inform quality practice, including our personcentred approaches, which if authentic must include the consumer voice. Some people reading this may consider that there is an inherent conflict between being, at the same time, an occupational therapist and consumer in the same context. Ultimately, it is passion that drives change for the better. Maybe it is time for the legitimate emergence of the occupational therapy practitioner and consumer (a consumer practitioner) who speaks with authority of their lived experience, advocates for practices that promote human rights and sit in the space of published evidence-based practice.

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