Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations

Background Engagement frameworks provide the conceptual structure for consumer engagement in healthcare decision making, but the level to which these frameworks support culturally and linguistically diverse (CALD) consumer engagement is not known. Objective This study aimed to investigate how consumer engagement is conceptualised and operationalized and to determine the implications of current consumer engagement frameworks for engagement with CALD consumers. Method Altheide's document analysis approach was used to guide a systematic search, selection and analytic process. Australian Government health department websites were searched for eligible publicly available engagement frameworks. A narrative synthesis was conducted. Results Eleven engagement frameworks published between 2007 and 2019 were identified and analysed. Only four frameworks discussed engagement with CALD consumers distinctly. Organisational prerequisites to enhance engagement opportunities and approaches to enable activities of engagement were highlighted to improve CALD consumers' active participation in decision making; however, these largely focused on language, with limited exploration of culturally sensitive services. Conclusion There is limited discussion of what culturally sensitive services look like and what resources are needed to enhance CALD consumer engagement in high‐level decision making. Health services and policy makers can enhance opportunities for engagement with CALD consumers by being flexible in their approach, implementing policies for reimbursement for participation and evaluating and adapting the activities of engagement in collaboration with CALD consumers. Patient/Public Contribution This study is part of a wider ‘CanEngage’ project, which includes a consumer investigator, and is supported by a consumer advisory group. The study was conceived with inputs from the consumer advisory group, which continued to meet regularly with the project team to discuss the methodology and emerging findings.

Section: Discussionmentioning

confidence: 99%

How do health services engage culturally and linguistically diverse consumers? An analysis of consumer engagement frameworks in Australia

Chauhan

Walpola

Manias

et al. 2021

“…A key task to undertake at the pre‐commencement stage should be an understanding of who should be involved. It is often the case that the ‘usual suspects’ are involved in co‐design work 14,35,37,49‐51 . Understanding, building trust and engaging diverse public involvement are a key activity at the pre‐commencement stage 11,37 .…”

Section: Pre‐commencement Stage: Who Decides That Co‐design Is the Best Approach?mentioning

confidence: 99%

“…Once co‐design commences, the main priority is to ensure that all participants are treated equally in the process 18,19,52 . Power relations within these interactions can manifest easily often because of where the co‐design occurs 32,37 . The space and place where the co‐design occurs are often overlooked 14 .…”

Section: Process Of Involvementmentioning

confidence: 99%

“…Often, people leave the co‐design space and think it is the responsibility of others to implement 47 . Perhaps the most significant gap of co‐design is enabling a feedback loop for all who were involved in the process as the ideas are implemented and evaluated 15,37 . How can participants who were involved in the co‐design project have oversight and involvement in the implementation state?…”

Section: After Co‐designing What Next?mentioning

confidence: 99%

See 1 more Smart Citation

Mitigating unintended consequences of co‐design in health care

Shé

Harrison

2021

Background Co‐design and associated terms are increasingly being used to facilitate values‐based approaches to health‐care improvement. It is messy and complex, involving diverse actors. Methods We explore the notion that initiatives have outcomes other than initially planned is neither new nor novel but is overlooked when thinking about co‐design. We explore some of the unintended consequences and outline some optimal conditions that can mitigate challenges. Discussion Although co‐design approaches are being applied in health care, questions remain regarding its ability to produce gains in health outcomes. Little is known about determining whether co‐design is the most suitable approach to achieve the given project goals, the levels of involvement required to realize the benefits of co‐design or the potential unintended consequences. There is a risk of further marginalizing or adding burden to under‐represented populations and/or over‐researched populations. Conclusion Undertaking a co‐design approach without the optimal conditions for inclusive involvement by all may not result in an equal partnership or improve health or care quality outcomes. Co‐design requires on‐going reflective discussions and deliberative thinking to remove any power imbalances. However, without adequate resources, a focus on implementation and support from senior leaders, it is a tough ask to achieve. Patient or Public Contribution This viewpoint article was written by two academics who have undertaken a significant amount of PPI and co‐design work with members of the public and patient's right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.

“…However, implementing an involvement strategy for any research project raises its own ethical issues about balancing meaningful involvement with other project delivery pressures 62,63 . Whilst many projects may acceptably elect for the inclusion of potential participants in consultative involvement roles, ‘co‐design’ suggests that benefits in terms of engagement and project efficacy can be delivered by authentic and equitable collaboration between stakeholders 64 . This can be hard to achieve in practice and there remain opportunities, for example, in researching young people's reflections on overcoming ethical issues in ABHR 65…”

Section: Ethical Considerations In Arts‐health Research With Adolescents With Acesmentioning

confidence: 99%

Ethical issues in participatory arts methods for young people with adverse childhood experiences

Pavarini

Smith

Shaughnessy

et al. 2021

Context Participatory arts‐based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. Objective Using the current literature on arts‐based health research as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. Results We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in‐practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. Conclusion Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. Patient or Public Contribution The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages.