Ask us! Adjusting experience‐based codesign to be responsive to people with intellectual disabilities, serious mental illness or older persons receiving support with independent living

Abstract

Introduction: Experience-based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long-term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations.Methods: Through a participatory research approach, EBCD was adjusted to longterm care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results:The participatory research resulted in the development of 'Ask us!'-a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long-term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo-voice and involving experts-by-experiences as co-ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo-elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts-by-experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible.

Disrupting patterns of exclusion in participatory spaces: Involving people from vulnerable populations

“…Wykes et al 40 and Manalili et al 36 draw on two overarching models from the family of participatory research approaches that have explicit intentions to attend to power asymmetries between stakeholders: communitybased participatory research and participatory action research, respectively. Usher and Denis 37 and Worsley et al 26 align their work with coproduction and Heerings et al 42 with experienced-based codesign. Other authors do not make such formal alignment with any overarching approach but describe the use of methodologies that are drawn from, or resonate with, these approaches because they are designed to support dialogues and colearning between diverse stakeholders (e.g., Pillen et al 30 describes the use of qualitative deliberative democratic methods, while Dawes et al 22 describes the use of Kolb's reflective model).…”

“…Other authors report the adaptation of existing methods and tools to make them more suitable for, and sensitive to, the specific needs of a patient or community group. This includes Heerings et al's 42 adaptation of experience‐based codesign to involve people with independent living experiences—people with ID, serious mental illness and older people—in a participatory quality improvement initiative. Hudon et al's 35 adaption of patient‐reported outcome measures, a primary tool in the philosophy of patient‐centred care so that the administration of the tool gained sensitivity without compromising its psychometric properties, and Meulendijks et al 41 move beyond the status quo of paper or digital booklets to the involvement of children with brain injury in care decisions by developing wonderfully innovative brain puzzles and avatars.…”

“…First, we consider who is in spaces for sharing decisions about research, services and policy in this special issue. There are papers with lead authors from seven countries: the United Kingdom, [22][23][24][25][26][27][28] Australia, [29][30][31][32][33] Canada, [34][35][36][37][38] the United States, 39,40 the Netherlands, 41,42 France 43 and Ecuador. 44 There are important examples involving people who experience homelessness, 22,23,34 people who have disabilities, 26,41,42 people who live in socioeconomically disadvantaged circumstances 35,37 and people who are migrants and/or from ethnic minority groups.…”

“…There are papers with lead authors from seven countries: the United Kingdom, [22][23][24][25][26][27][28] Australia, [29][30][31][32][33] Canada, [34][35][36][37][38] the United States, 39,40 the Netherlands, 41,42 France 43 and Ecuador. 44 There are important examples involving people who experience homelessness, 22,23,34 people who have disabilities, 26,41,42 people who live in socioeconomically disadvantaged circumstances 35,37 and people who are migrants and/or from ethnic minority groups. 25,31,36 There are also papers involving people with diabetes who experience stigma because of their condition 30 and COVID vulnerable populations, such as those with genetic, undiagnosed and rare disorders.…”

“…Second, what kind of methods are used in projects based on these partnerships? The papers report systematic reviews, [23][24][25] original research using qualitative, quantitative and mixed-methods studies 26,[29][30][31][34][35][36][37][39][40][41][42] and reflective practice. 22 This resonates with a key finding in the wider literature about meaningful partnerships 3,4 : collaborative research orientation is the core issue rather than the nature of the methods being used.…”