Using Participatory Learning & Action research to access and engage with 'hard to reach' migrants in primary healthcare research.

BACKGROUND: Communication problems occur in general practice consultations when migrants and general practitioners do not share a common language and culture. Migrants' perspectives have rarely been included in the development of guidelines designed to ameliorate this. Considered 'hard-to-reach' on the basis of inaccessibility, language discordance and cultural difference, migrants have been consistently excluded from participation in primary healthcare research. The purpose of this qualitative study was to address this gap. METHODS: The study was conducted in the Republic of Ireland, 2009 - 2011. We developed a multi-lingual community-university research team that included seven established migrants from local communities. They completed training in Participatory Learning & Action (PLA) - a qualitative research methodology. Then, as trained service-user peer researchers (SUPERs) they used their access routes, language skills, cultural knowledge and innovative PLA techniques to recruit and engage in research with fifty-one hard-to-reach migrant service-users (MSUs). RESULTS & DISCUSSION: In terms of access, university researchers successfully accessed SUPERs, who, in turn, successfully accessed, recruited and retained MSUs in the study. In terms of meaningful engagement, SUPERs facilitated a complex PLA research process in a language-concordant manner, enabling inclusion and active participation by MSUs. This ensured that MSUs' perspectives were included in the development of a guideline for improving communication between healthcare providers and MSUs in Ireland. SUPERs evaluated their experiences of capacity-building, training, research fieldwork and dissemination as positively meaningful for them. MSUs evaluated their experiences of engagement in PLA fieldwork and research as positively meaningful for them. CONCLUSIONS: Given the need to build primary healthcare 'from the ground up', the perspectives of diverse groups, especially the hard-to-reach, must become a normative part of primary healthcare research. PLA is a powerful, practical 'fit-for-purpose' methodology for achieving this: enabling hard-to-reach groups to engage meaningfully and contribute with ease to academic research. PLA has significant potential to become a 'standard' or generic approach in building community-based primary health care. Community-university partnerships have a significant role to play in this, with capacity to radically influence the shape of healthcare research, expanding the research agenda to incorporate the views and needs of hard-to-reach and vulnerable populations.

A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory.

BACKGROUND: There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine - normalized - way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization - definition, enrolment, enactment and appraisal. METHOD: Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. FINDINGS: Twenty-six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co-governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. CONCLUSION: To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co-governance and dissemination of research processes and findings.

Involving migrants in the development of guidelines for communication in cross-cultural general practice consultations: a participatory learning and action research project.

OBJECTIVE: The aim of this research was to involve migrants and other key stakeholders in a participatory dialogue to develop a guideline for enhancing communication in cross-cultural general practice consultations. In this paper, we focus on findings about the use of formal versus informal interpreters because dialogues about these issues emerged as central to the identification of recommendations for best practice. DESIGN: This qualitative case study involved a Participatory Learning and Action (PLA) research methodology. PARTICIPANTS: The sample comprised 80 stakeholders: 51 from migrant communities; 15 general practitioners (GPs) and general practice staff; 7 established migrants as peer researchers; 5 formal, trained interpreters; and 2 service planners from the national health authority. SETTING: Galway, Ireland. RESULTS: There was 100% consensus across stakeholder groups that while informal interpreters have uses for migrants and general practice staff, they are not considered acceptable as best practice. There was also 100% consensus that formal interpreters who are trained and working as per a professional code of practice are acceptable as best practice. CONCLUSIONS: Policymakers and service planners need to work in partnership with service providers and migrants to progress the implementation of professional, trained interpreters as a routine way of working in general practice.

Arranging and negotiating the use of informal interpreters in general practice consultations: experiences of refugees and asylum seekers in the west of Ireland.

This paper focuses on the work involved for service users in arranging and negotiating the use of informal interpreters from their social networks for general practice consultations. The data are drawn from a participatory learning and action research study, carried out in the west of Ireland. Qualitative data were gathered using a peer researcher model from a 'hard to reach' community of Serbo-Croat and Russian refugees and asylum seekers (n=26). The findings elucidate that there is a tension for service users between the experienced benefits of having a trusted friend/family member present to act as their interpreter and the burden of work and responsibility to manage the language barrier. Participants emphasize that, for them, the use of informal interpreters can be inadequate and problematic and can leave them worried, frustrated and with experiences of error and misdiagnosis. Overall, they state a clear preference for the use of professional, trained interpreters in general practice consultations which is currently unavailable to them in routine Irish general practice consultations.