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

MacFarlane, Anne; LeMaster, Joseph W.

doi:10.1111/hex.13578

Cited by 3 publications

(7 citation statements)

References 40 publications

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“…The strategies described often hinge on the planning of codesign work to build rapport and ensure respectful interactions, but also make reference to facilitation practice during the codesign process 6,7 . Effective facilitation can promote partnership and provide avenues for reciprocity, active participation, power distribution in decision‐making and shared decision‐making; elements of codesign that form a foundation for inclusion 8,9 . Through facilitation, opportunities to enable and affirm the value of diverse contributions are created for codesign members.…”

Section: Introductionmentioning

confidence: 99%

“… 6 , 7 Effective facilitation can promote partnership and provide avenues for reciprocity, active participation, power distribution in decision‐making and shared decision‐making; elements of codesign that form a foundation for inclusion. 8 , 9 Through facilitation, opportunities to enable and affirm the value of diverse contributions are created for codesign members. For example, using inclusive language, limiting jargon, inviting diverse opinions, and managing contributions to ensure equal opportunity to voice opinions.…”

Section: Introductionmentioning

confidence: 99%

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Employing cofacilitation to balance power and priorities during health service codesign

Harrison,

Newman,

Chauhan

et al. 2023

Health Expectations

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Applications of codesign and related participatory approaches endeavour to democratise the process and product of health service research and improvement efforts. As a group of methods that are ground in a user-centric, participatory approach, codesign is valued for supporting people with lived experiences of a health condition or service to have their voices heard and acted upon via their contributions to codesign activities. 1,2 It is now well-established that the practice of codesign is fraught with challenges in ensuring equity, access to and inclusion in its processes to realise its proposed gains. [1][2][3][4] Those who facilitate codesign activities, by planning, guiding and supporting the codesign process, are central actors who, through their practice, seek to achieve a democratic, effective and inclusive process.Yet codesign facilitators are a heterogenous group of individuals who may occupy a variety of additional roles relevant to the codesign goals beyond that of facilitating the process. Facilitators' background, personal characteristics, motivations or other attributes may influence the group dynamic and ultimately outcome.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Employing cofacilitation to balance power and priorities during health service codesign

Harrison,

Newman,

Chauhan

et al. 2023

Health Expectations

View full text Add to dashboard Cite

show abstract

“…Thus, participatory spaces in primary healthcare share an implementation problem —typically they are not embedded as routine and normalised practice in primary healthcare 9 . Further, a pattern of exclusion whereby patients and communities who experience marginalisation experience suboptimal involvement may be revealed in each of these participatory spaces 10,11 …”

Section: Introductionmentioning

confidence: 99%

“…9 Further, a pattern of exclusion whereby patients and communities who experience marginalisation experience suboptimal involvement may be revealed in each of these participatory spaces. 10,11 Given contemporary global migration patterns, refugees and other migrants in the United States and other resettlement countries bring increasing cultural and linguistic diversity to primary care settings, such that cross-cultural consultations are no longer confined to specialist refugee clinics but are increasingly a feature of mainstream clinical practice even in rural and remote areas. 12,13 There is thus an urgent need to attend to the suboptimal involvement of refugees and migrants in primary healthcare decision-making; to understand their health needs and to take action for equitable health outcomes.…”

Section: Introductionmentioning

confidence: 99%

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Refugee and migrants' involvement in participatory spaces in a US practice‐based research network study: Responding to unanticipated priorities

LeMaster

Lutgen

Matharoo

et al. 2023

Health Expectations

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Background Refugees and migrants face suboptimal involvement in spaces for primary healthcare decision‐making. Given the rising numbers of resettled refugees and migrants in primary care settings in the United States, there is an urgent need for patient‐centred outcome research in practice‐based research networks (PBRNs) with diverse ethnolinguistic communities. This study explored whether researchers, clinicians and patients would achieve consensus on (1) a common set of clinical problems that were applicable across a PBRN and (2) potential clinical interventions to address those problems to inform a patient‐centred outcomes research (PCOR) study in a similar research network. Methods In this qualitative participatory health research study, patients from diverse ethnolinguistic communities and clinicians from seven practices in a US PBRN discussed preferences for PCOR responsive to patients and the clinicians who serve them in language‐discordant settings. Researchers and an advisory panel that included patients and clinicians from each participating practice held regular advisory meetings to monitor progress on project milestones and solve emerging problems. Participants took part in 10 sessions using Participatory Learning in Action and the World Café methods to identify and prioritise their ideas, using questions set for them by the advisory panel. Data were analysed based on principles of qualitative thematic content analysis. Results Participants identified common barriers in language‐discordant healthcare settings, principally patient‐clinician communication barriers and suggestions to overcome these barriers. A key finding was an unanticipated consensus about the need for attention to healthcare processes rather than a clinical research priority. Negotiation with research funders enabled further analysis of potential interventions for care processes to improve communication and shared decision‐making in consultations and the practice as a whole. Conclusion PCOR studies should examine interventions for improving communication between patients from diverse ethnolinguistic communities and primary care staff if the sorts of harms experienced by patients experiencing language‐discordant healthcare are to be reduced or prevented. Flexibility and responsiveness from funders to unanticipated findings are key structural supports for participatory health research in primary care clinical settings with this population and others who experience marginalisation and exclusion. Patient or Public Contribution Patients and clinicians participated in the study both in the formulation of the study question, data collection, analysis and dissemination of these results; consented to their individual participation; and reviewed early drafts of the manuscript.

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Underserved Deep End populations: a critical analysis addressing the power imbalance in research

Mitchell,

Fryer,

Guess

et al. 2023

Br J Gen Pract

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

Cited by 3 publications

References 40 publications

Employing cofacilitation to balance power and priorities during health service codesign

Employing cofacilitation to balance power and priorities during health service codesign

Refugee and migrants' involvement in participatory spaces in a US practice‐based research network study: Responding to unanticipated priorities

Underserved Deep End populations: a critical analysis addressing the power imbalance in research

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