Participatory Research for Person-Centered Care: Involving Undocumented and Recent Migrants

Abstract

Background: Participatory research is increasingly used to inform person-centered care bottom-up. Nonetheless, researchers often declare it too challenging to include the most underserved groups, a misconception the CICADA study sought to address. Objectives: The objectives of this study were to examine a combination of several participatory approaches and research methods that were used to explore COVID-19 pandemic experiences of health and social care among disabled people from minoritized ethnic groups. Methods: An intersectional mixed-methods study included secondary data analyses, a three-wave survey and semi-structured qualitative interviews with follow-up workshops. Inclusive assets-based participatory methods were deployed. These incorporated focal community members as co-researchers and participants as co-designers of pragmatic outputs. Results: This approach enabled rich data collection from groups often excluded from health research, such as disabled recent and undocumented migrants. Data exemplify the extent, diversity and intersecting nature of various determinants of health and inequities and also successful coping strategies. The community of focus was chosen bottom-up with stakeholders, across the UK, with emphasis on locally relevant contexts and local capacity building, with local embedding of co-researchers. Focusing on community and individual strengths, assets and contexts has transformative potential. Shared power with and engagement of underserved groups was ensured throughout. Conclusions: Participatory research methods can effectively inform person-centered care, especially for underserved groups. Different participatory procedures are designed for different ends and should be used strategically. A carefully considered approach with community members as co-researchers and partner collaborators is practical, effective and efficient. Co-creation and co-design enhance mutual understandings, with outputs likely to beused in practice for and by underserved groups.