• Ethnic Minority Health in Ireland-Co-creating knowledge (EMH-IC): a participatory health research protocol.

      Hannigan, Ailish; Basogomba, Alphonse; LeMaster, Joseph; Nurse, Diane; O'Reilly, Fiona; Roura, Maria; Villarroel, Nazmy; MacFarlane, Anne (BMJ Open, 2018-10-31)
      International policy recommends continuous, cost-effective monitoring of health data to enable health services to identify and respond to health inequities as experienced by different ethnic groups. However, there is a lack of routinely collected ethnicity data, particularly in primary care, and very little implementation research internationally to understand how ethnic identifiers are introduced, embedded and used in healthcare settings. This paper describes a protocol for a novel participatory health research project with the objective of building the evidence base on ethnic minority health in Ireland. Findings on the participatory appraisal of ethnic identifiers as an intervention to generate useful data about minority and majority ethnic groups will have relevance in other settings and countries. This multidisciplinary project is designed as a participatory health research study where all stakeholders, including ethnic minority communities, participate in co-design of the research protocol, project governance, collaborative data interpretation and disseminating findings. A national catalogue of all routinely collected health data repositories will be electronically searched for any repositories that contain information on ethnicity. A secondary quantitative analysis of a population-representative cohort study, Growing Up in Ireland, will be carried out to compare the health of ethnic minority and majority groups. A qualitative case study informed by normalisation process theory will be carried out at three primary care sites to monitor the implementation of an ethnic identifier and identify barriers and levers to implementation. Ethical approval for the qualitative case study has been granted by the Irish Council for General Practitioners (06/09/17). Permission to access data from Growing Up in Ireland has been granted by the Director General of the Central Statistics Office. Dissemination will be carried out at community events and academic conferences, in peer-reviewed journal publications, and through academic and healthcare provider networks.
    • Evaluating Complex Interventions and Health Technologies Using Normalization Process Theory: Development of a Simplified Approach and Web-Enabled Toolkit

      May, Carl R; Finch, Tracy; Ballini, Luciana; MacFarlane, Anne; Mair, Frances; Murray, Elizabeth; Treweek, Shaun; Rapley, Tim (2011-09-30)
      Abstract Background Normalization Process Theory (NPT) can be used to explain implementation processes in health care relating to new technologies and complex interventions. This paper describes the processes by which we developed a simplified version of NPT for use by clinicians, managers, and policy makers, and which could be embedded in a web-enabled toolkit and on-line users manual. Methods Between 2006 and 2010 we undertook four tasks. (i) We presented NPT to potential and actual users in multiple workshops, seminars, and presentations. (ii) Using what we discovered from these meetings, we decided to create a simplified set of statements and explanations expressing core constructs of the theory (iii) We circulated these statements to a criterion sample of 60 researchers, clinicians and others, using SurveyMonkey to collect qualitative textual data about their criticisms of the statements. (iv) We then reconstructed the statements and explanations to meet users' criticisms, embedded them in a web-enabled toolkit, and beta tested this 'in the wild'. Results On-line data collection was effective: over a four week period 50/60 participants responded using SurveyMonkey (40/60) or direct phone and email contact (10/60). An additional nine responses were received from people who had been sent the SurveyMonkey form by other respondents. Beta testing of the web enabled toolkit produced 13 responses, from 327 visits to http://www.normalizationprocess.org. Qualitative analysis of both sets of responses showed a high level of support for the statements but also showed that some statements poorly expressed their underlying constructs or overlapped with others. These were rewritten to take account of users' criticisms and then embedded in a web-enabled toolkit. As a result we were able translate the core constructs into a simplified set of statements that could be utilized by non-experts. Conclusion Normalization Process Theory has been developed through transparent procedures at each stage of its life. The theory has been shown to be sufficiently robust to merit formal testing. This project has provided a user friendly version of NPT that can be embedded in a web-enabled toolkit and used as a heuristic device to think through implementation and integration problems.
    • Exploring levers and barriers to accessing primary care for marginalised groups and identifying their priorities for primary care provision: a participatory learning and action research study

      O’Donnell, Patrick; Tierney, Edel; O’Carroll, Austin; Nurse, Diane; MacFarlane, Anne (2016-12-03)
      Abstract Background The involvement of patients and the public in healthcare has grown significantly in recent decades and is documented in health policy documents internationally. Many benefits of involving these groups in primary care planning have been reported. However, these benefits are rarely felt by those considered marginalised in society and they are often excluded from participating in the process of planning primary care. It has been recommended to employ suitable approaches, such as co-operative and participatory initiatives, to enable marginalised groups to highlight their priorities for care. Methods This Participatory Learning and Action (PLA) research study involved 21 members of various marginalised groups who contributed their views about access to primary care. Using a series of PLA techniques for data generation and co-analysis, we explored barriers and facilitators to primary healthcare access from the perspective of migrants, Irish Travellers, homeless people, drug users, sex workers and people living in deprivation, and identified their priorities for action with regard to primary care provision. Results Four overarching themes were identified: the home environment, the effects of the ‘two-tier’ healthcare system on engagement, healthcare encounters, and the complex health needs of many in those groups. The study demonstrates that there are many complicated personal and structural barriers to accessing primary healthcare for marginalised groups. There were shared and differential experiences across the groups. Participants also expressed shared priorities for action in the planning and running of primary care services. Conclusions Members of marginalised groups have shared priorities for action to improve their access to primary care. If steps are taken to address these, there is scope to impact on more than one marginalised group and to address the existing health inequities.
    • Normalisation process theory: a framework for developing, evaluating and implementing complex interventions

      Murray, Elizabeth; Treweek, Shaun; Pope, Catherine; MacFarlane, Anne; Ballini, Luciana; Dowrick, Christopher; Finch, Tracy; Kennedy, Anne; Mair, Frances; O'Donnell, Catherine; et al. (2010-10-20)
      Abstract Background The past decade has seen considerable interest in the development and evaluation of complex interventions to improve health. Such interventions can only have a significant impact on health and health care if they are shown to be effective when tested, are capable of being widely implemented and can be normalised into routine practice. To date, there is still a problematic gap between research and implementation. The Normalisation Process Theory (NPT) addresses the factors needed for successful implementation and integration of interventions into routine work (normalisation). Discussion In this paper, we suggest that the NPT can act as a sensitising tool, enabling researchers to think through issues of implementation while designing a complex intervention and its evaluation. The need to ensure trial procedures that are feasible and compatible with clinical practice is not limited to trials of complex interventions, and NPT may improve trial design by highlighting potential problems with recruitment or data collection, as well as ensuring the intervention has good implementation potential. Summary The NPT is a new theory which offers trialists a consistent framework that can be used to describe, assess and enhance implementation potential. We encourage trialists to consider using it in their next trial.
    • Perspectives of people with aphasia poststroke towards personal recovery and living successfully: A systematic review and thematic synthesis

      Manning, Molly; MacFarlane, Anne; Hickey, Anne; Franklin, Sue; School of Allied Health, Faculty of Education and Health Sciences, University of Limerick, Limerick (Plos One, 2019-03)
    • A qualitative systematic review of studies using the normalization process theory to research implementation processes

      McEvoy, Rachel; Ballini, Luciana; Maltoni, Susanna; O’Donnell, Catherine A; Mair, Frances S; MacFarlane, Anne (2014-01-02)
      Abstract Background There is a well-recognized need for greater use of theory to address research translational gaps. Normalization Process Theory (NPT) provides a set of sociological tools to understand and explain the social processes through which new or modified practices of thinking, enacting, and organizing work are implemented, embedded, and integrated in healthcare and other organizational settings. This review of NPT offers readers the opportunity to observe how, and in what areas, a particular theoretical approach to implementation is being used. In this article we review the literature on NPT in order to understand what interventions NPT is being used to analyze, how NPT is being operationalized, and the reported benefits, if any, of using NPT. Methods Using a framework analysis approach, we conducted a qualitative systematic review of peer-reviewed literature using NPT. We searched 12 electronic databases and all citations linked to six key NPT development papers. Grey literature/unpublished studies were not sought. Limitations of English language, healthcare setting and year of publication 2006 to June 2012 were set. Results Twenty-nine articles met the inclusion criteria; in the main, NPT is being applied to qualitatively analyze a diverse range of complex interventions, many beyond its original field of e-health and telehealth. The NPT constructs have high stability across settings and, notwithstanding challenges in applying NPT in terms of managing overlaps between constructs, there is evidence that it is a beneficial heuristic device to explain and guide implementation processes. Conclusions NPT offers a generalizable framework that can be applied across contexts with opportunities for incremental knowledge gain over time and an explicit framework for analysis, which can explain and potentially shape implementation processes. This is the first review of NPT in use and it generates an impetus for further and extended use of NPT. We recommend that in future NPT research, authors should explicate their rationale for choosing NPT as their theoretical framework and, where possible, involve multiple stakeholders including service users to enable analysis of implementation from a range of perspectives.
    • Research activity and capacity in primary healthcare: the REACH study: a survey.

      Glynn, Liam G; O'Riordan, Ciara; MacFarlane, Anne; Newell, John; Iglesias, Alberto A; Whitford, David; Cantillon, Peter; Murphy, Andrew W; Department of General Practice, National University of Ireland, Galway, Ireland. liam.glynn@nuigalway.ie (2009)
      BACKGROUND: Despite increased investment in primary care research and development (R&D), the level of engagement of primary healthcare professionals with research remains poor. The aim of this study is to assess the level of research activity and capacity for research among primary healthcare professionals in a health authority of over one million people in a mixed urban/rural setting in the West of Ireland. METHODS: A questionnaire, incorporating the R+D Culture Index, was sent to primary healthcare professionals in the HSE Western Region. Baseline characteristics were analysed with the use of one-way ANOVA and Chi-square test and the dependence of R&D Culture Index score on all sixteen available covariates was examined using multiple regression and regression tree modelling. RESULTS: There was a 54% response rate to the questionnaire. Primary healthcare professionals appeared to have an interest in and awareness of the importance of research in primary care but just 15% were found to be research active in this study. A more positive attitude towards an R&D culture was associated with having had previous research training, being currently involved in research and with not being a general practitioner (GP) (p < 0.001), but much variability in the R&D culture index score remained unexplained. CONCLUSION: Despite awareness of the importance of R&D in primary care and investment therein, primary healthcare professionals remain largely unengaged with the R&D process. This study highlights the issues that need to be addressed in order to encourage a shift towards a culture of R&D in primary care: lack of research training particularly in basic research skills and increased opportunities for research involvement. The use of the R&D Culture Index may enable groups to be identified that may be more research interested and can therefore be targeted in any future R&D strategy.
    • REsearch into implementation STrategies to support patients of different ORigins and language background in a variety of European primary care settings (RESTORE): study protocol

      MacFarlane, Anne; O’Donnell, Catherine; Mair, Frances; O’Reilly-de Brún, Mary; de Brún, Tomas; Spiegel, Wolfgang; van den Muijsenbergh, Maria; van Weel-Baumgarten, Evelyn; Lionis, Christos; Burns, Nicola; et al. (2012-11-20)
      Abstract Background The implementation of guidelines and training initiatives to support communication in cross-cultural primary care consultations is ad hoc across a range of international settings with negative consequences particularly for migrants. This situation reflects a well-documented translational gap between evidence and practice and is part of the wider problem of implementing guidelines and the broader range of professional educational and quality interventions in routine practice. In this paper, we describe our use of a contemporary social theory, Normalization Process Theory and participatory research methodology—Participatory Learning and Action—to investigate and support implementation of such guidelines and training initiatives in routine practice. Methods This is a qualitative case study, using multiple primary care sites across Europe. Purposive and maximum variation sampling approaches will be used to identify and recruit stakeholders—migrant service users, general practitioners, primary care nurses, practice managers and administrative staff, interpreters, cultural mediators, service planners, and policy makers. We are conducting a mapping exercise to identify relevant guidelines and training initiatives. We will then initiate a PLA-brokered dialogue with stakeholders around Normalization Process Theory’s four constructs—coherence, cognitive participation, collective action, and reflexive monitoring. Through this, we will enable stakeholders in each setting to select a single guideline or training initiative for implementation in their local setting. We will prospectively investigate and support the implementation journeys for the five selected interventions. Data will be generated using a Participatory Learning and Action approach to interviews and focus groups. Data analysis will follow the principles of thematic analysis, will occur in iterative cycles throughout the project and will involve participatory co-analysis with key stakeholders to enhance the authenticity and veracity of findings. Discussion This research employs a unique combination of Normalization Process Theory and Participatory Learning and Action, which will provide a novel approach to the analysis of implementation journeys. The findings will advance knowledge in the field of implementation science because we are using and testing theoretical and methodological approaches so that we can critically appraise their scope to mediate barriers and improve the implementation processes.
    • Responses to language barriers in consultations with refugees and asylum seekers: a telephone survey of Irish general practitioners.

      MacFarlane, Anne; Glynn, Liam G; Mosinkie, Phillip I; Murphy, Andrew W; Department of General Practice, National University of Ireland, Galway, Ireland. anne.macfarlane@nuigalway.ie (2008)
      BACKGROUND: Refugees and asylum seekers experience language barriers in general practice. Qualitative studies have found that responses to language barriers in general practice are ad hoc with use of both professional interpreters and informal interpreters (patients' relatives or friends). However, the scale of the issues involved is unknown. This study quantifies the need for language assistance in general practice consultations and examines the experience of, and satisfaction with, methods of language assistance utilized. METHODS: Data were collected by telephone survey with general practitioners in a regional health authority in Ireland between July-August 2004. Each respondent was asked a series of questions about consulting with refugees and asylum seekers, the need for language assistance and the kind of language assistance used. RESULTS: There was a 70% (n = 56/80) response rate to the telephone survey. The majority of respondents (77%) said that they had experienced consultations with refugees and asylum seekers in which language assistance was required. Despite this, general practitioners in the majority of cases managed without an interpreter or used informal methods of interpretation. In fact, when given a choice general practitioners would more often choose informal over professional methods of interpretation despite the fact that confidentiality was a significant concern. CONCLUSION: The need for language assistance in consultations with refugees and asylum seekers in Irish general practice is high. General practitioners rely on informal responses. It is necessary to improve knowledge about the organisational contexts that shape general practitioners responses. We also recommend dialogue between general practitioners, patients and interpreters about the relative merits of informal and professional methods of interpretation so that general practitioners' choices are responsive to the needs of patients with limited English.
    • The e-Health Implementation Toolkit: Qualitative evaluation across four European countries

      MacFarlane, Anne; Clerkin, Pauline; Murray, Elizabeth; Heaney, David J; Wakeling, Mary; Pesola, Ulla-Maija; Lindh Waterworth, Eva; Larsen, Frank; Makiniemi, Minna; Winblad, Ilkka (2011-11-19)
      Abstract Background Implementation researchers have attempted to overcome the research-practice gap in e-health by developing tools that summarize and synthesize research evidence of factors that impede or facilitate implementation of innovation in healthcare settings. The e-Health Implementation Toolkit (e-HIT) is an example of such a tool that was designed within the context of the United Kingdom National Health Service to promote implementation of e-health services. Its utility in international settings is unknown. Methods We conducted a qualitative evaluation of the e-HIT in use across four countries--Finland, Norway, Scotland, and Sweden. Data were generated using a combination of interview approaches (n = 22) to document e-HIT users' experiences of the tool to guide decision making about the selection of e-health pilot services and to monitor their progress over time. Results e-HIT users evaluated the tool positively in terms of its scope to organize and enhance their critical thinking about their implementation work and, importantly, to facilitate discussion between those involved in that work. It was easy to use in either its paper- or web-based format, and its visual elements were positively received. There were some minor criticisms of the e-HIT with some suggestions for content changes and comments about its design as a generic tool (rather than specific to sites and e-health services). However, overall, e-HIT users considered it to be a highly workable tool that they found useful, which they would use again, and which they would recommend to other e-health implementers. Conclusion The use of the e-HIT is feasible and acceptable in a range of international contexts by a range of professionals for a range of different e-health systems.
    • The Impact of Direct Provision Accommodation for Asylum Seekers on Organisation and Delivery of Local Primary Care and Social Care Services: A Case Study

      Pieper, Hans-Olaf; Clerkin, Pauline; MacFarlane, Anne (2011-05-15)
      Abstract Background Many western countries have policies of dispersal and direct provision accommodation (state-funded accommodation in an institutional centre) for asylum seekers. Most research focuses on its effect on the asylum seeking population. Little is known about the impact of direct provision accommodation on organisation and delivery of local primary care and social care services in the community. The aim of this research is to explore this issue. Methods In 2005 a direct provision accommodation centre was opened in a rural area in Ireland. A retrospective qualitative case study was designed comprising in-depth interviews with 37 relevant stakeholders. Thematic analysis following the principles of framework analysis was applied. Results There was lack of advance notification to primary care and social care professionals and the community about the new accommodation centre. This caused anxiety and stress among relevant stakeholders. There was insufficient time to plan and prepare appropriate primary care and social care for the residents, causing a significant strain on service delivery. There was lack of clarity about how primary care and social care needs of the incoming residents were to be addressed. Interdisciplinary support systems developed informally between healthcare professionals. This ensured that residents of the accommodation centre were appropriately cared for. Conclusions Direct provision accommodation impacts on the organisation and delivery of local primary care and social care services. There needs to be sufficient advance notification and inter-agency, inter-professional dialogue to manage this. Primary care and social care professionals working with asylum seekers should have access to training to enhance their skills for working in cross-cultural consultations.