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Paper short abstract:

The 'Ask us!' method is a PPI method for including clients and informal carers in improving quality of long term care through sharing experiences, reflection and co-design. The method is developed from theoretical notions familiar in STS: 'tinkering', 'invisible work' and 'infrastructuring'.

Paper long abstract:

Narratives in which people with disabilities, serious mental illness or older persons have self-determination over their lives and care, live independently and are active in the community are dominant in governmental and organizational policies alike. These narratives cover-up the normative complexities inherent in care practices focusing on empowerment of service users. It is therefore important to foster collective tinkering. This way, these normative complexities can be better attended to in practice.

Collective tinkering requires infrastructures where service users, professionals and relatives alike are supported in developing counter narratives through which their needs and caring practices are explicated and taken-up to improve services. The ‘Ask Us!’ method provides such an infrastructure. This method includes several reflexive sessions where clients, professionals and informal carers develop themes for quality improvement and design such improvements together. These reflections are triggered by short videos of theatrical monologues based on ethnographic research on care practices. These monologues communicate the normative complexities, counter narratives of burdens and the invisible work of caring.

We approach the ‘Ask Us!’ method both in practical terms as an infrastructure for narrative, critical and participatory quality improvement and as a mode of experimentation. Implementing and evaluating this method in different care organizations brings about reflections on, and tinkering with, care practices. This generates further insight into the normative complexities of care aimed at empowering services users and how these can be tinkered with collectively.

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Paper short abstract:

Conveying an experience most and foremost means ‘making contact’ and the question we might ask ourselves is: ‘How do we make this contact?’ Through the lens of visual anthropology, we create pathways and possibilities to reflect on how we convey an experience to help increase PPI.

Paper long abstract:

With patient narratives we get a glimpse of what ‘living with’ a certain disability must be like. We learn about idea’s, practices, obstacles and even possibilities the people incorporate and endure in their daily routines. In written stories and sometimes even documented clips from interviews these stories become powerful vehicles to carry certain ideas and messages to healthcare professionals and other people to shine light on the most often unseen and untold aspects of disease and illness. Even so, this would only be a glimpse of the actual experience itself. Through the lens of visual anthropology, we create pathways and possibilities to reflect on how we convey an experience and bring a message across to a wider audience.

In our research project Psychosis in Picture, we ‘ve conducted multiple filmed interviews about the experience of ‘living with’ psychosis. With the incorporation of visual anthropology, the role of film can become more than just a medium to transfer a message. Visual anthropology helps us to better understand the emotions, memories and senses that are rooted in these stories and how we can use them to activate emotional/sensorial responses within our spectators. ‘Making contact’ in this manner becomes one of a literal and figurative fashion. When we watch a film, we not only do that with our eyes but with the whole of our bodies. Reflecting on these experiences can help us to better convey the patient experiences and help us to create a greater patient and public involvement.

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Paper short abstract:

Based on a review of literature, we explore what normative and conceptual constructions of epistemic justice exist, and what sort of relational and structural work helps to do justice to the experiential knowledge of people with psychiatric illnesses.

Paper long abstract:

Despite literature showing the relevance of including experiential knowledge of care recipients in decision-making (Caron-Flinterman et al., 2005), this type of knowledge remains undervalued. Epistemic injustice has been used as a theoretical concept to show the power imbalances and structural practices that prioritize scientific and medical knowledge over experiential knowledge (Carel & Kidd, 2014). This is especially true for the knowledge of people with psychiatric illnesses, as sanism leads to discarding the knowledge of people deemed not ‘sane’ (Leblanc & Kinsella, 2016).

While there is an increasing amount of literature on epistemic injustice, we know little about what epistemic justice looks like and how to reach it even though this is crucial to do justice to people with psychiatric illnesses in their capacity as knowers. White (Beresford & Russo, 2022) defines epistemic justice as the moment when society considers people who have been deemed Mad credible witnesses to their own experiences and they are able to render intelligible to themselves and others their experiences of oppression. Yet, the requirements of what we might call epistemic justice are many and various (Fricker, 2013) and must include both institutional change as well as reflexivity of all knowers in decision-making processes.

In our contribution, we explore what normative and conceptual constructions of epistemic justice exist, and what sort of relational and structural work contributes to epistemic justice within mental health care. We draw on a review of literature on epistemic (in)justice and the role of the experiential knowledge of people with psychiatric illnesses.

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Paper short abstract:

Despite the widespread recognition of patient engagement, it remains a methodological ‘add-on’ to the traditional health system. Aligned with ideas of Greenhalgh et al (2019), we propose the concept of 'frameworking', involving collectively designing PE while acknowledging their inherent ambiguity.

Paper long abstract:

Since the 1980s, there has been a call for patient engagement (PE) in health decision-making, aiming for a more responsive health system. Despite the widespread recognition of PE’s ideological significance, a systemic shift towards a needs-oriented system has not yet materialized. PE remains a methodological ‘add-on’ to the traditional health system often appearing as a proliferation of standardized and staged initiatives.

The multifaceted and elusive nature of PE, stemming from varied interpretations, often leads to unsuccessful practices. According to Knaapen and Lehoux (2016), PE designers encounter a dilemma between two approaches: a 'top-down' design based on engagement theories, and a 'bottom-up' design co-created with local actors in their contexts. The former, although theoretically grounded, is criticized for its impracticality due to PE’s dynamic and context-dependent nature. Conversely, overly practical approaches tend to adopt an instrumental stance, integrating patient(representative)s and their insights into existing decision-making processes, frequently without considering how or by whom patients' experiential knowledge could be most effectively integrated.

Building on the insights of Knaapen and Lehoux (2016), we argue for integrating STS perspectives to navigate these tensions. Rather than rigidly adhering to theoretical frameworks, designers should engage in co-creation processes critically examining and adapting these frameworks to specific contexts and needs. Therefore, aligned with the ideas of Greenhalgh et al. (2019), we propose the concept of 'frameworking', involving collectively designing PE while acknowledging their inherent ambiguity. During the open panel, we aim to discuss the concept of frameworking and its potential in addressing current PE challenges.